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Active Myeloma Cancers Chemotherapy dexamethasone Filgrastim (Neupogen) KRD (Kyprolis, Revlimid, dexamethasone) Kyprolis (carfilzomib) melphalan Multiple Myeloma Neulasta Pomalyst (pomalidomide) Revlimid (lenalidomide) Velcade

Valarie’s Multiple Myeloma Story

Valarie’s Multiple Myeloma Story

Valarie T. feature profile

Before being diagnosed with multiple myeloma and breast cancer, Valarie worked in the human resources field. Since being on the cancer journey, her focus has shifted to patient education and advocacy.

As a cancer survivor, her goal is to learn more about the diseases, educate others and bring light to health inequity. She wants to use her voice for those who cannot speak up for themselves to ensure that they receive equitable access to good healthcare, clinical trials and proper treatment.

Valarie’s journey in patient education, mentorship and advocacy began when she became a support group leader. She is now a myeloma coach, mentor angel and leader of the Black Myeloma Health Community. She has had the opportunity to talk about disparities myeloma patients face and looks for solutions through partnerships with healthcare providers.

  • Name: Valarie T.
  • Primary Diagnosis:
    • Multiple Myeloma
  • Initial Symptoms:
    • Nose bleeds
    • Fatigue
    • Back pain
  • Treatment:
    • Chemotherapy
    • Stem cell transplant
  • Secondary Diagnosis:
    • Breast Cancer, Triple-Negative
  • Staging: 1A
  • Initial Symptoms:
    • None; caught at a regular screening mammogram
  • Treatment:
    • Chemotherapy
    • Mastectomy

Get educated about your disease. Understand what it is. Knowledge is power. When you get that knowledge, do something with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.

Valarie T.
Valarie T. timeline

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Valarie T.

Pre-diagnosis

Introduction

I’m [a] pretty down-to-earth person. I enjoy the great outdoors when it’s warm [and] spending time with friends and family.

What I do is work that’s around myeloma and patient education. I also enjoy doing things at my church. I’m really involved with my church and that brings me great joy.

Initial symptoms

It was late 2014. The first incident happened around Thanksgiving. I went back to school. I was studying and working on some homework on my computer [when] I got a nosebleed. I didn’t think anything of it. I just stopped for a little bit, held my head back, and [it] kind of dissipated [so] I got back to doing what I was doing.

The exact same thing happened [again] a couple of weeks later but this time, it bled a little bit more, a little longer than the first time. I still wasn’t concerned. I thought it was the weather. I’d asked some of my friends, “What do you think’s going on?” And they’re like, “Oh, it’s changing seasons and you probably got just some dry sinuses.” They told me to “just put a little Vaseline in there. You’ll be okay and keep going.” I did that and I thought it was working.

When I got a bout of flu, it just wouldn’t go away.

Valarie T.

About a month later, I got sick with the flu and I just felt tired, overly tired. At that time, I was working full-time in HR. I was overly tired when it came to work, but I didn’t think anything of it. I was working, doing schoolwork, [and] very involved in church, so I just chalked it up to just trying to do too much at one time.

But when I got a bout of flu, it just wouldn’t go away. I went to the doctor. I got all the things that you take [that] should [make you] feel better. It was Christmas Day [and] I couldn’t even celebrate because I was sick in bed so I knew something was going on. I went over to my local [pharmacy]. They gave me more meds and said, “If you’re not better by Monday, go see your primary care.” And that’s what I did.

I went to see my primary care physician. I told her what was going on with the tiredness. At that time, I did have some back pain. It was nothing major. I told her about the back pain and the nosebleeds. She listened to what I had to say. She ran a complete panel of blood work and that came back showing high protein so immediately, she sent me to see a hematologist-oncologist. That’s how things started.

When she sent me to the hematologist and I saw ‘oncologist’ tagged on, I knew something was not like it should have been.

Valarie T.
Initial hematologist-oncologist appointment

When my primary care referred me to the hematologist, I didn’t think anything of that because I had been diagnosed with anemia many, many years ago and I was taking iron supplements.

It wasn’t until I went to see the hematologist and found out that he was an oncologist as well. I’m like, “Why would I need to see an oncologist?” It was something that snapped in my head at that moment. This is a little bit more than what I’m thinking, but I still didn’t think anything too drastic.

I make this joke all the time. I tell people, “I went to see my hematologist thinking I was going to get a prescription for iron and I came back with a cancer diagnosis.” That’s literally how it happened.

When she sent me to the hematologist and I saw “oncologist” tagged on, I knew something was not like it should have been.

I heard the term ‘biopsy’ and I’m like, ‘Okay, this is really serious.’

Valarie T.
Testing

They were a little suspicious from the blood work. At this time, they were still doing the full body X-ray. It was when they did the full body X-rays and the bone marrow biopsy [that] all the pieces started to come together.

Another incident that let me know it was a little bit more serious [was] when they asked me to come back. I went and did blood work for the hematologist early one morning and before I had gotten home, the nurse called and said, “We need you to come back. The doctor wants to do some more tests.” I’m like, “Well, what does he see? What is he expecting?” She wouldn’t say anything so that was another thing. Something’s going on because I haven’t even gotten home and you want me to come back right away.

She told me to come back because they needed to do a bone test. I didn’t know what that was. Little did I know that that was a bone marrow biopsy. When I got there, I heard the term “biopsy” and I’m like, “Okay, this is really serious.”

Valarie T.
Importance of a good support system

Luckily, my friend went with me. She said, “I’m not going to let you go back over there by yourself.” I did have some support when things started to unfold.

I remember the doctor talking to me and I heard the words, “You have myeloma. It’s incurable.” I went blank for a minute. It is always helpful to have someone with you [to] maybe ask some questions that you wouldn’t even think to ask [or be] a second set of ears, second set of hands. You want to have somebody there.

How to help someone with cancer »

Valarie T.

Diagnosis

Reaction to the diagnosis

It wasn’t as shocking because I had just learned about my chart. I had been looking at every single test that had come back. If this is high, what does it mean? Multiple myeloma kept coming up and I’m like, “What in the world is that?” But I still put it out of my head.

It wasn’t until that moment I went into the office and was sitting there and heard those words. It was like somebody kicking me in the gut. What? Cancer? An incurable cancer? And that’s when the flood of fear came. I’m going to die. I’m too young to die. Why me? All of those range of emotions. How am I going to tell my family? What do I say? Where do I even start to talk about this?

Reacting to a cancer diagnosis »

Valarie T.

My friend, Judy, went with me to that appointment. She’s a cancer survivor as well so she was like, “I’m not going to let you go by yourself.” That was very helpful to have someone who has heard those words before. She knew exactly what I could have been feeling so she was there to help me keep it together.

Breaking the news to loved ones

It was hard. I didn’t do it right away. It [took] a couple of weeks. I knew they would have questions that I didn’t know [the] answers [to] or where to even begin.

My friends see me every day and they want to know what’s going on. It was easier for me to say, “Hey, this is what’s going on,” and just left it at that because I didn’t know what to expect.

I don’t live near my family so it was a little difficult. It was hard because I didn’t know what to tell them. I didn’t know the answers. That was one of the most difficult things to do. I finally got the courage to just say, “I’ve got multiple myeloma and this is what it is. I don’t know where it came from. I don’t know anything, but this is what I’ve got. This is what I’m looking at.”

How to tell your family and friends you have cancer »

Valarie T.

What was very helpful to me was the advocacy agencies… Places like that are very good to provide information.

Learning about multiple myeloma

It was tough to begin with because [of] the shock that you have myeloma. But I learned very, very early. I wanted to learn as much as I possibly could about whatever was invading my body. If I can learn about it, I can at least try to get one step ahead.

For me, I always say it was just a control thing. I felt the more I knew about it, at least I would have some control. That was my mindset so I went on this mission to find out whatever I could about the disease.

It just stuck with me, actually, this whole time. I’m always on a mission to find out a little bit more about the disease.

Valarie T.
Finding the right information

It’s different for everyone. What was very helpful to me was the advocacy agencies. I went to the IMF (International Myeloma Foundation) website to find out what you’re going to need to know and some questions. They have some cool tip cards and brochures.

I utilized the MMRF (Multiple Myeloma Research Foundation) website [and] found out what was going on. Places like that are very good to provide information.

At that time, HealthTree was just coming up so I was looking to see what I could find that was going to help me figure out what to ask at what point in the journey.

What is health literacy and why is it important? »

Treatment

I got diagnosed and they wanted me to start treatment the next day. I was like, “Okay, I guess I should go ahead and do this,” because what do you do when you get cancer? You want to get it out of you.

I didn’t start right away. It was probably a week or two later when I went in. I followed what they said because I didn’t know the right questions to ask. I went along with what the doctor [said]. I hadn’t sought a second opinion. I didn’t realize that I needed to see a specialist.

I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility.

Valarie T.
Deciding to get a second opinion

About three treatments [in], I just felt horrible. At the urging of my family, they were like, “You got to get a second opinion. You have to. You’re up there where all those doctors are. You have the ability to do that.” I decided to get a second opinion and it’s one of the best things that I could have ever done.

I saw a hematologist at a local hospital. He treated other cancers as well so I realized that that was not the best thing for me.

They started me out with Thalidomide, Velcade, and Dex — that was my treatment regimen to begin with. I didn’t realize that was an old regimen that wasn’t being used and my doctor probably didn’t realize that either that’s why he gave me that. I did about three- or four-week cycles worth and by that time, I was able to get that second opinion. 

I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility. I knew something was wrong because that was not me at all. Two months ago, I could still walk and was coherent.

Where I live, there is a facility called the Cancer Treatment Centers of America. Everyone was like, “You’ve got to go there. That’s all they do — cancer, cancer, cancer. You’re going to be in good hands.” I decided to go there.

Should patients get second opinions? »

Valarie T.

It was[then] I started learning a lot more about myeloma and the different treatments available. It was through them that I got connected with the specialists.

I came to find out that my hemoglobin was at 4.6 so that’s why I was feeling horrible. I learned that [my regimen] was not the latest treatment. [It] was standard of care, but there was something better.

I also learned about stem cell transplant. We talked about [it] and what that looked like. I learned a lot more than what my local oncologist shared with me. I feel that with my local oncologist, [there] was a lack of communication. I was told, “You’re going to do four cycles of this, then you’re going to go for a stem cell transplant, then you may do a couple more cycles, and then you’ll be back to your new normal.” And I was like, “Oh, okay, so maybe [in] a year things will be back to normal?” And that was not the case.

When I got to the other doctor, he really explained what the process entailed and [that] there’s no certain time. It’s not like you’re going to do this and you’ll be back to your normal life. It was eye-opening because I wanted to believe what I had been told. It sounded so much better and it would have worked for me if that were the case. But life’s not like that.

At first, I was a little angry. How does this even happen? But it happens. It helped me understand that there has to be more done when it comes to awareness and letting people know about myeloma. Letting people know that this is what myeloma is, but also letting them know what treatments are out there, what you should be getting and what [is] probably not the best thing for you to be receiving either.

Valarie T.
Side effects

When I switched from Revlimid to Pomalyst, it took a little bit of getting used to because my body was like, “Oh, I don’t think I like that.” I had major GI issues and most people don’t have GI issues with Pomalyst but that’s something that I was struggling with.

Taking those in combination, I had shortness of breath [which] slowed me down even further. I was concerned. There’s the risk of cardiac issues when you’re taking Kyprolis. I got afraid. I’m like, “I don’t want to take that because it may be doing something to my heart. I’m having shortness of breath already.” They sent me to see a cardiologist a couple of times just to make sure everything was okay and [it’s] one of the side effects. I eventually adjusted to that. That’s just part of the new normal so I adjusted and kept going.

I was very vocal. Even if I thought it was a side effect, I would say something because I didn’t know. I looked at the list of everything that could happen but maybe this is something that hadn’t been reported. It is possible.

With Velcade, I did have some neuropathy in my toe area to start with. My doctors would always ask, every week when I would come in to get it, “Are you feeling any numbness, tingling, or anything of that nature?” Even if it was a small amount, I would make sure that I said something so they could do something about it and that was very helpful.

Hear directly from patients who shared what side effects they experienced after undergoing treatments »

Valarie T.

Velcade is a subcu (subcutaneous injection) and I’m sure most people would have those little spots on their abdominal area wherever the shot was given. Sometimes it could be painful and I would tell them so they could guide me on what to do. [There] wasn’t a whole bunch they could do. It’s just unsightly. It’s a reminder of what you’re going through but still, I was very vocal in letting them know what was going on.

With Revlimid, one of the first things that scared me is I woke up itching one morning. It started as an itch on my legs. Did something bite me? Is it a mosquito bite? Before the end of the day, I was just itching all over uncontrollably. The more I scratched, the worse it got. Nothing would take it away. I called the doctor and they called in a prescription that would help. But people need to be aware of that. I didn’t know that could happen. I was surprised. What the heck is going on? It was really bad.

I realized that I’m not in control of this or anything else.

Valarie T.
Dealing with treatment roadblocks

It was that word: control. It was then that I realized I’m not in control of this or anything else. I did all the things that I was supposed to do. I got my knowledge. I have no control.

All of those feelings, I just sat with them. I didn’t try to push them away. I just said, “You’ve got to deal with this. You’re going to have to deal with this.” And I just dealt with it.

My faith played a very important role. I had my prayer partners praying and that helped me tremendously. And I sought some therapy because I knew I can’t do this by myself. It’s not something that I can just pray away. I really needed some outside help.

I needed somebody that was going to listen and just listen. I couldn’t talk to my friends because they didn’t understand. They just hadn’t been there. They didn’t know. Therapy was one of the best things I could have done because my therapists helped me through the process.

My faith played a very important role… And I sought some therapy because I knew I can’t do this by myself.

Valarie T.

Stem cell transplant

Preparing for stem cell transplant

I did four cycles of treatment thinking it was going to bring down the disease burden to where I could move forward with [the] transplant. At the end of my four cycles, I’m thinking, “Yes! It’s [the] transplant.” It didn’t happen. I hadn’t eliminated enough of the cancer cells in order to move forward.

Then comes the conversation of [needing] to do more therapy. We’re going to continue the induction therapy. That’s when I found out about myeloma clones. Never heard of that until I was about six months in. It’s those little things that if you know, then you can be better prepared.

I wasn’t prepared to be told [I] can’t go to transplant. It’s so funny because I went and shaved my head. I was like, “I’m going to shave it all off before it happens.” And they’re like, “No, you can’t. You’re not ready for that yet.” I was disappointed, a little angry, [and] just bewildered. What’s happening now? Another gut punch.

Find answers to popular stem cell transplant questions and experiences »

Induction therapy

I got switched to Revlimid, Velcade, and Dex. I did four additional cycles. [When] it wasn’t working anymore, I was switched over to Kyprolis, Pomalyst and Dex, and I had [an] immediate response. That’s what really got me ready for the transplant.

Valarie T.
Expectation setting

Going into the transplant, I was told what I could expect. I used to follow The Myeloma Beacon. I started following Pat Killingsworth and listened to what he said. I got his book about stem cell transplants. I read the book and I’m like, “I’m going to make sure I do everything that they say to do.” 

Follow the advice of your doctors and nurses. They do this every single day. They can tell you how to prepare. I listened and followed some of the big names out there. These people know what’s going on and that helped me prepare for the transplant.

The week before the transplant, I found out my insurance was not going to cover [it] where I wanted to do it. That was something else that had to be worked out. Eventually, we got it taken care of but that was a very stressful time just trying to figure [it] out. What am I going to do if the insurance is not going to cover it here? What do I do?

Valarie T.
Dealing with insurance issues

I was working with the stem cell transplant navigator at the hospital. She was such a godsend because I didn’t know what to do. I did not need the stress. She was like, “Hey, this happened. We’re going to take care of it,” and she just knew the right things to do.

I had everything in place. My family was coming out to spend time with me. A couple of my friends had taken off work. They had taken vacation time to be there for me. So when I heard this, I’m like, “Whoa, everything’s in place. It can’t just not happen because it’s going to affect other things.”

She helped me get it all worked out. Have somebody working on your behalf. Don’t try to do it all by yourself. If you’re one of those people [who thinks] you don’t need help, you do need help. Someone to help you with paperwork, to make phone calls for you, to do that type of work for you. People want to do that so let them.

The stem cell transplant navigator was excellent. My other friend, Karen, was excellent [at] making phone calls and doing things. I didn’t have to stress a lot because they made sure that things were taken care of. They [took] the pressure off of me.

Don’t try to do it all by yourself. If you’re one of those people that think you don’t need help, you do need help. People want to do that so let them. When things come up, let them.

Valarie T.
Stem cell transplant process

It was a little scary at first. I was going into the unknown. I didn’t know what to expect. They told me, “On this day, you’ll go in. You’ll get the high-dose Melphalan. Make sure you chew ice chips. Then you’ll have a rest day and then you’ll get your stem cells back.”

A couple of weeks before, they give you shots that stimulate the stem cells. I had to give myself those shots in my stomach and that was a process because I never had to give myself shots before.

After four days of shots, I went to the facility to harvest the stem cells. They put this big catheter in your neck, which feels really, really weird. It was very painful for me to do the apheresis and get the circulating stem cells from the blood. That process was a little scary because you don’t know what to expect. You’re laying in bed hooked up to this machine and you see the blood going out of your body and being flushed back in.

I was very fortunate. I got all of the cells I needed in two days so I didn’t have to come back. They told me it could take four days to collect the cells.

Valarie T.

I didn’t go for the transplant right away. I waited a couple of weeks and something was going on with my schedule and I wasn’t able to go.

Then came the insurance issue. My cells were frozen for a couple of weeks. I [went] back to the facility and had to reinsert the Hickman port — very uncomfortable to go through that process.

I’m admitted to the hospital. They test for C. diff (clostridium difficile infection) and lo and behold, I’m positive for C. diff so there’s another component that you don’t expect. That means I’ve got to be isolated in addition to the transplant. Other precautions had to be taken as well.

I remember it was a Wednesday evening. It was a very long day. I get the high-dose Melphalan and I’m chewing on ice chips. Thursday was my rest day. Bright and early Friday morning, the nurse comes in, checks all my vitals and she’s like, “This is it. This is the big day.”

A couple of hours later, the other nurse came in with this little bag of cells and I’m like, “This is the life-sustaining things that I’m going to get back.” At that time, a couple of members of my family had come up. My friends had taken off work to be there for me, supporting me. They kept a chart to let me know what was going on outside of the hospital.

Valarie T.

I received my cells back. It was Friday morning [at] about 11:40, [I] celebrated my new birthday and the rest is just waiting to see what happens.

Recovering from the stem cell transplant

One of the most trying times was waiting for that engraftment period. I didn’t feel too bad the first couple of days. [On] the third day, I could start to feel something’s going on. The fourth day [was] okay.

On the fifth day, my head started to hurt. Every time I would run my fingers through my hair, it would just hurt tremendously. I’m like, “What the heck is going on?” Little did I know that was the beginning of the hair getting ready to fall out. And that was tough, even though I knew it was going to happen. It was still tough when it did happen.

Valarie T.

Like clockwork, on day five, all my numbers bottomed out. I was feeling horrible [and] had the worst diarrhea that you can imagine. I felt that I was going to die. I woke up that morning and I was like, “Oh my God, I could die from this.” At that time, I was alone. My visitors hadn’t come in yet and I was just sitting there like, “I could die. If I get an infection, I could die. There’s no way I can fight it off.”

There was another patient undergoing stem cell transplant [who] had been there a few days before I’d gotten there, caught an infection and didn’t make it. Just knowing that on top of everything else, I was a basket case.

But I had great doctors, great nurses [and] a great team of people [who] took care of me and pulled me through it. They would come in every day, check on me, do what they had to do, and say, “Hey, you got to keep positive. You will get through this.” And I believed them because they do this every day. Why would I doubt them?

Recovery was really hard. The thing that surprised me most was the overwhelming fatigue. I would get up, sit on the side of the bed and go, “Oh, I can’t do this today,” and lay back down for a little bit. Then realize, “Okay, you’ve got to get up. You can’t just lay here in the bed. That’s not going to be helpful to you,” so I managed to get up. Then it was like, “Okay, let’s get to the shower,” so I would manage to get a shower, but I [got] out of the shower and I [had] to lay back down again. I’m like, “What in the world is going on? I can’t even hold my arm up.” That went on for a pretty good while.

Valarie T. mom's party

I didn’t have to worry about cooking, cleaning, or anything like that. My friends were very good with making sure I was taken care of [so I could] take my time and get better. I made myself get out, walk to the mailbox, [and] walk around the block just to get some exercise. When I did that, I did feel better. There were times when it was 1:00 or 2:00 in the afternoon and I felt I needed a nap. I listened to my body.

Maintenance therapy post-SCT

We talked about what was going to happen after the transplant and we agreed on consolidation therapy. That was very popular at the time. Some doctors were doing it, some were [not]. We talked about doing consolidation for about two to three months after the stem cell transplant.

Consolidation therapy is just a continuation of the therapy you were on before you went for the transplant. You just do it a little bit longer to deepen the response to try and get rid of more of the disease burden.

Valarie T.

When you look at that myeloma iceberg, consolidation therapy chips away at that iceberg a little bit more. We talked about doing that for two to three cycles more and that eventually turned into a 12-month cycle.

I really didn’t fully understand that at first. “We talked about two to three months. What are you talking about?” But when they explained to me how we want to deepen the response, I’m like, “Oh, okay. I guess I can go through this a little bit longer.” In my mind, that’s going to give me a longer remission, help me live longer, [and] help me live as much as normal life as I possibly can. I fought it at first but when I saw the risk-benefit, why not?

Consolidation therapy

We talked about what’s next long before the end of 12 months because I [didn’t] want any surprises. We talked about just doing Pomalyst, going on a single regimen for maintenance.

[While] I was going through consolidation therapy, I did MRD testing. I did find out I was MRD negative, which I was really excited about. I understood what MRD negative meant so I [asked], “Do I still need to do maintenance?” Because we had talked about going on maintenance indefinitely.

Valarie T.
Side effects from Pomalyst

Once I completed the consolidation therapy, I went right into maintenance therapy. I didn’t have any problems with it [initially] but eventually, it did weaken my immune system to a greater magnitude to where my counts were always low.

I was doing monthly blood work. I had to do that in order to get Pomalyst. My counts were consistently low. I was having to get the Neupogen [and] Neulasta shots to build my ANC (absolute neutrophil count) up.

At that time, my hemoglobin was still borderline. I was still often fatigued. I had a conversation with my doctor about that and they were like, “Okay, maybe we can do a dose reduction.” We talked about that, what that meant and what it looked like. I did a dose reduction and that did help improve my numbers to where I was not as bad all of the time.

I stayed on that particular dose for a couple of years then the same thing started to happen. I was experiencing bone marrow suppression. It was really bad so we did another dose reduction. I told him what was going on, how I was feeling, [and] how it wasn’t improving. You could see it in my blood work. Every month, it was the same thing.

Valarie T.

We decided to do another dose reduction and found a happy spot where I’m comfortable. I can live freely, so to speak. I’m comfortable doing things without fear my counts are low. And this is before COVID. You have to go out in a mask and it’s like, “I don’t want to do this.” You [can’t] participate in events because you’re afraid. If I get this least little thing, I’m going to be sick and down for days. It relieved that. It made things better.

Testing for minimal residual disease (MRD)

MRD stands for minimal residual disease. It is the test to determine if they can detect any myeloma cells after transplant or induction therapy. It wasn’t something they did on a regular basis back [then]. When I had that test done, I was very happy to hear that I was MRD negative.

My doctor and I had talked. “After you finish consolidation therapy, we’re going to put you on a single agent Pomalyst as maintenance.” My question was, “What if I’m MRD negative? You just said I don’t have any traces. Why should I take this? Why should I want to continue with the maintenance again?” They explained to me [that] the goal is to get rid of as much myeloma as possible, chip away at as much of that iceberg as possible.

When I saw the benefits, I made that [decision]. It was ultimately up to me if I didn’t want to do maintenance. All I had to do was say, “No, I don’t want to do that.” The doctors would have been okay with that.

Valarie T.

That’s one thing I learned: shared decision-making. You have to have a say in it because ultimately, it’s your body, it’s your quality of life so make sure you have a say in what’s going on. Don’t just go along with it.

Receiving a second cancer diagnosis

I was doing well, trying to get back on track to my new normal and along came a breast cancer diagnosis. This was out of nowhere.

I was going for my yearly mammograms and always was told, “You have dense breasts. Just keep an eye out for things and we’ll see you back next year.” At this particular time, I went for my mammogram and got a callback. They [said] “We want you to come back. We need to do an ultrasound.” I didn’t think anything of it. I’m going to go back and they’ll do an ultrasound and tell me I’m good. That was not the case this time.

They picked up something on the screening mammogram [so] they pulled me back for a diagnostic mammogram and ultrasound. When they did the ultrasound, they did see a couple of things that were not on the previous year’s ultrasound so I was sent for a biopsy.

I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better.

Valarie T.

I was scared. At that point, I knew what biopsy meant. They’re looking for something. They don’t just send you for a biopsy. It was breast cancer. Here I am again, that whole gut kick. Again? Really? Where did this come from? What did I do to deserve this?

But I will say, having been on the myeloma journey and knowing a little bit more, it was a little easier to manage this. I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better than I did going into the multiple myeloma. That’s been an added step to my journey. I’d like to say [that] myeloma prepared me for the things that I went through with breast cancer.

Dealing with a second cancer diagnosis on top of myeloma treatment

With the breast cancer diagnosis, I was terribly scared. I’m going to have to get treatment for this. Is that going to trigger something in the myeloma? That brought about this fear. Am I safe to do this?

The breast cancer diagnosis was very early stage — it was stage 1A. There was no lymph node involvement but the location of the tumors [meant] I [had] to have a mastectomy. That is a whole ’nother beast. The blood cancer was almost like an invisible cancer. It was something that was going on within your body.

With breast cancer, it was a lot different. It was harder. Having to have [my] breast removed was very difficult for me to accept in the beginning. This was just too much. I can’t go through this. I just can’t do this. It’s just the thought of amputation. I was very fearful.

Valarie T.

Even though I was prepared as a patient, I was still very fearful because I didn’t know what the treatment would bring. I didn’t know [what] the side effects would be. Again, I tried to be positive about things and look for the silver lining.

My breast cancer was triple negative. There’s no pill that I can take to suppress anything. Again, I was very fearful. What if I go through all this — I have this chemo and I have my breast removed — what if it’s still there? What if it comes back because it’s triple negative and it’s not as easy to treat? I was dealing with a lot of fear in that instance as well, just like I was with the myeloma.

What helped me was I just sat there in the fear. I acknowledged that fear. I was thinking, Okay, you’ve gotten through myeloma. You can get through this, too. It’s very early stage. I was in a good position, if that makes sense. I don’t [think you’re] ever in a good position with any cancer, but I was in a good position where I wasn’t too concerned.

My doctor assured me early on. “We can take care of it. This will not take you out, Valarie.” That was very reassuring to hear. The oncologist said that the surgeon said the very same thing. Very supportive and [guided] me through that process as well.

Valarie T.

How culture influences health care

There are so many things that vary from culture to culture. A lot of times, cultural beliefs prevent people from moving forward with a certain treatment. Not just stem cell transplants, but certain treatments. Receiving blood — certain cultures just don’t do that. Those things have to be acknowledged.

You have to understand someone’s culture in order to understand why they would make certain decisions. Culture is a big influence on decision-making in many instances.

Dealing with the healthcare system as a black woman in America

Being a myeloma coach, I get to talk to myeloma patients, many [of] who have been newly diagnosed and [have] been on the journey for a while. I get to hear a lot of what they have been through or how many times they had to go to the doctor to get a proper diagnosis.

Valarie T.

I realize that I’m very fortunate. My primary care knew the tests to run, picked up on the high protein, and sent me to see a hematologist. I know that is not always the case. People may have to go to the doctor two or three times before they even are heard to say, “Hey, this is what’s going on.”

I talked to many people who, when they get to the doctor, find out that they’re in kidney failure. On top of having the disease, it’s the shock of how you are told that you have the disease. Those are the types of things patients deal with.

I was talking to this lady. She went to the doctor [and] finally got the diagnosis, but they wanted her to wait to start treatment. They didn’t want to start treatment right away. Why would they want you to wait? That doesn’t make sense. I see that that doesn’t make sense, but as a patient who doesn’t know how things are supposed to work, that may seem normal.

I was told about [the] stem cell transplant early on in the process. There are patients [who] are not told about that. They’re just told, “We’re going to utilize this treatment and if this doesn’t work, then we’ll go to something else.” This was before we had so many novel therapies so it’s not like you had a lot to choose from. It was just assumed you don’t want a stem cell transplant, you may not be able to get to the facility, or you may not have the support to go through a transplant. It’s just varying things that patients have to deal with when it comes to health inequities.

As a doctor, you have to talk to your patient and find out where there is hesitancy. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it.

Valarie T.

Sometimes it’s not discussed simply because it’s not talked about. And that’s very unfortunate because of the bias. You’re making that assumption just because I live in a certain zip code that maybe I shouldn’t do this, I wouldn’t want to do this or I don’t have the ability?

A lot of it is just access to care. We [have] to make sure that we’re getting the patients to the right place at the right time. We have to break down those barriers.

I’m not a doctor, but as a doctor, you have to talk to your patient and find out where there is hesitancy. Let’s say you talk to someone about a stem cell transplant and they decide they don’t want to do it. You have to find out why. Is it that they don’t want to do it or [do] they have other things creating barriers [that don’t allow] them to do it?

Child care. If you have children, you can’t just say, “Hey, I’m going to shut down for two weeks to be in the hospital and then I’ve got 100 days of recoup time.” Who’s going to take care of things? Who’s going to take care of the house, particularly if it’s not a two-person home? Getting back and forth to the clinic [for] follow-up visits. All of those things need to be taken into consideration. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it. There may be underlying reasons.

People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow.

Valarie T.
Importance of shared treatment decision-making

It’s a game changer, particularly for patients who are accustomed to just going along with what the doctors say. In the African-American community, that’s kind of the norm. The doctor knows best. He knows more than you do about the disease. You need to follow what you’ve been told. That’s just instilled in a lot of us. But that’s not the case. It doesn’t have to be like that.

People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow. You don’t have to follow what the doctor is saying blindly because you don’t think you can say anything. You can say something and you should. Because again, it’s your life. You have to live with the side effects. You have to live with the treatment schedule so you want to have as much say as possible in that.

Valarie T.

All of those feelings that I was still in, I just sat with them. I didn’t try to push them away.

Words of advice

It was my faith that really pulled me through and knowing I’m going to get through this. I believe that I’m going to get through this. I’m trusting the process, as they say. Just trust the process.

You have to acknowledge those feelings that you have because if you don’t acknowledge them, they would just eat away at you. Tell somebody. I told my friend, “I felt like I was going to die this morning. I really felt that. I didn’t know what was going to happen, what could happen.” And that was very helpful when I let that out, when I released that and said something.

You can’t ignore your feelings because they are not going to go anywhere. They’re going to be there. They want to be acknowledged. I acknowledged every thought that came. I’m scared. I might die. It was just getting it out there and releasing it. Having that release was very helpful in my situation.

Find something that’s going to give you hope. Very early on with the myeloma, I got connected with others [who] were on the journey. Get connected with others that have been on the journey.

About six months into my diagnosis, I met a 26-year survivor and that just brought me so much joy. I was like, “26 years? You lived? I can do that, too! It’s possible for me, too.” Meeting that individual gave me so much hope.

Finding power through the words of other patients »

Valarie T.

Don’t think you’re alone in this. You’re not alone. There are so many people dealing with a lot of the same things that you’re dealing with. Reach out to those people. Get connected. Whether it’s through a support group or a group at your church, get connected.

One thing that you don’t want to do is shut yourself off from people. Don’t shut yourself off because that’s not going to do you any good.

Make your needs known. People don’t know what you need. They can speculate. “Oh, she’s going through cancer. She may need this,” or “Oh, she just got out of the hospital. She may need this,” but don’t make people guess. Let it be known because people want to help. They’re willing to help but a lot of times, they just don’t know what to do so you got to tell them.

Valarie T.

Get educated about your disease whether it’s myeloma, breast cancer or any other kind of cancer. Find out about the disease. Understand what it is. Don’t just listen to what people tell you. I’m not saying you have to be this research advocate. Knowledge is power.

When you get that knowledge, do something with it. Don’t just sit on it. I think that’s where we make the mistake a lot of times. We have all this knowledge and then we don’t do anything with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.

Look for the positive. I try to be positive about everything. [There’s] a silver lining somewhere. Find that silver lining.

Listen to your body. Don’t think that you have to get back to life. You have to heal. You have to listen to your body and take the time that you need to get well.

Sometimes, people are afraid to speak up because of embarrassment. “I’ll just deal with it.” Don’t suffer through. There are things that can help you get through so take advantage of those things. Utilize those things. Communicate with your doctor. I know a lot of people are not comfortable talking to their doctors. Talk to the physician’s assistant. Talk with the nurse practitioner. That’s what they’re there for.

You [have] to speak up. If patients are heard or feel they are heard, that would change the whole dynamic. A lot of people, if they feel they’re not heard, they’re going to stop talking. It’s not going to benefit them.

Listening and understanding — listening for understanding and not just listening to say, “Well, I heard what they say. It still doesn’t make sense to me.” It may not make sense to you, but it’s still acknowledging what the patient said, what’s been said.

Find others on the journey. Connect with others. Educate yourself. Knowledge is power.

Don’t think you’re alone in this. You’re not alone.


Valarie T. warrior
Thank you for sharing your story, Valarie!

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Multiple Myeloma Stories

Clay

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Melissa

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...

Elise D.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P multiple myeloma

Marti P.



Diagnosis: Multiple myeloma, stage 3



1st Symptoms: Dizziness, confusion, fatigue, vomiting, hives



Treatment: Chemotherapy (Bortezomib/Velcade), Daratumumab/ Darzalex, Lenalidomide, Revlimid) and stem cell transplant
...
Ray H. feature

Ray H.



1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...
Valarie T. feature profile

Valarie T.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...

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Categories
Multiple Myeloma Relapsed/Refractory

Donna’s Multiple Myeloma Story

Donna’s Multiple Myeloma Story

Featuring Dr. Cristina Gasparetto

Donna K. was just 59 years old when she was diagnosed with multiple myeloma, a cancer that starts in plasma cells, one kind of white blood cell. There were no obvious symptoms — she discovered the myeloma through a blood test and went through one of the most aggressive treatment regimens of that time (“Total Therapy”).

In our educational series, this avid cyclist and grandmother details her 5 lines of therapy, from heavy chemotherapy with 2 stem cell transplants to many triplet combinations, including the selinexor + carfilzomib + dexamethasone combination she’s currently on.

Also part of this conversation is Donna’s oncologist and top myeloma specialist, Dr. Cristina Gasparetto. The Director of the Multiple Myeloma Program at Duke Health delves into the STOMP clinical trial that Donna is a part of and with which she has found success.


Table of Contents
  1. Introduction
  2. Multiple myeloma diagnosis
  3. The relapse
  4. Treatment decision-making conversation
  5. 2nd- line therapy
  6. Cases for switching drugs and drug classes
  7. Signs of the next relapse
  8. Decisions on next lines of therapy
  9. Clinical trials
  10. Selinexor triplet clinical trial (STOMP)
  11. Living with multiple myeloma
  12. The STOMP Clinical Trial

These interviews have only been edited for clarity. Thank you to Karyopharm Therapeutics for its support of our educational program.

This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Making Treatment Decisions with My Oncologist

Donna details her diagnosis through her first relapses, living with multiple myeloma, and the patient perspective of making her treatment decisions.

Her current oncologist, top multiple myeloma specialist Dr. Cristina Gasparetto of Duke, also shares how she helps her patients arrive at treatment decisions at each juncture and what patients should be asking their own doctors.

Introduction

Stephanie Chuang: Hi, everyone, it’s Stephanie with The Patient Story, and I am so thrilled to be introducing the people part of our conversation today, our guests. 

Donna will be sharing her incredible story and what she’s gone through with multiple myeloma and the incredible spirit with what she’s done.

Her doctor, her myeloma specialist, Dr. Cristina Gasparetto, is the director of the Multiple Myeloma Program at the Duke Cancer Institute.

Welcome to you both. Before we dive in, there’s a lot to talk about. Let’s start with you, Donna. I want to just ask you to try and talk about yourself the way you would to someone new about who you are, Donna, outside of the cancer context.

Donna K., Multiple Myeloma Patient

Donna K.: Thank you. Well, I am a grandmother, first of all, and an athlete. I like to go out and work out all the time, and I’m a former product line manager in a computer networking industry, where I spent most of my career. I’ve been retired for several years and have traveled most of the East Coast.

I spent half of my life with this disease, and I just want to help people. I just want to win.

Dr. Cristina Gasparetto
Dr. Cristina Gasparetto, Duke’s Dir. of Multiple Myeloma

Stephanie Chuang: Thank you so much for sharing that. Dr. Gasparetto, when I was first talking to Donna about her experience here, she said, “She’s a force to be reckoned with, that Dr. Gasparetto.” She also said just how indebted she was to the fact that you had called her in the beginning when she wasn’t sure whether to call you or not for treatment. That’s something else, because we know how busy you are. What drives you to do this for people?

Dr. Cristina Gasparetto: I feel like I spent half of my life with this disease, and I just want to help people. I just want to win. I don’t know if I can win the war, but a lot of battles with my patients. I want them to know that I’m there for them. It’s the only reason why I’m doing it. If not, there would not be a purpose.

Multiple myeloma diagnosis

Stephanie Chuang: Thank you for sharing that. I appreciate you both being here, so let’s dive right in. We’re not going to spend too much time with the first-line treatment. Donna, I think people will be interested in understanding how you discovered that you had myeloma, what it was and how you dealt with that.

Donna K.: I’m a fortunate person in that I discovered multiple myeloma before it had done any structural damage. I just discovered it through a blood test and rapid bone degeneration. It turns out one of my markers is in my blood, so it can be tracked and monitored by blood tests. I was lucky.

How did you decide where to get treatment?

Stephanie Chuang: At the time, you mentioned you had gone to a center that had touted — this is back in 2012 — that it got patients to 5 years. Can you describe that and what you were feeling as you went through your first treatments?

Donna K.: Anybody who gets a cancer diagnosis is in shock for a while, and I went into investigative mode and was directed through the friend of a friend to a place where she had gone, where they had the best progression-free period at that time, which was 5 years.

I went to Little Rock for 11 months of treatment. Actually, at the time, it was somewhat unique. It was a rough treatment, but fortunately, I was fit enough to deal with it.

Learning about remission

Stephanie Chuang: That was June 2012 to May 2013. You had undergone several different therapies. How did you find that you were in remission, and how did you respond at the time?

Donna K.: Unfortunately, I found out I’m in complete remission with a bone marrow biopsy, so it’s not a fun way to find out. It was 11 months when I was in complete remission, but I continued with a maintenance program. 

It doesn’t end as soon as you get in complete remission; it’s just that I got to move back home. The bone marrow biopsy can determine if you’re minimal residual disease (MRD) negative, and it’s the quintessential test for the disease. The blood test just tells you whether or not it’s time to check the bone marrow.

Stephanie Chuang: Thank you for running us through that. What was the maintenance therapy you were on?

Donna K.: It was Velcade and Revlimid, so it was pretty intense for a maintenance program, and I had some bad reactions. I ended up discontinuing after 8 months because of the reactions.

Stephanie Chuang: What reactions were those? 

Donna K.: Severe neuropathy, other stomach issues, other things.

What questions should patients ask about 1st-line therapy?

Stephanie Chuang: Thank you for sharing, Donna. Before we go any further, Dr. Gasparetto, I know you didn’t see Donna at the time, but what’s your general guidance? There are many different patient profiles, but when people are not going to a specialist, what questions might they need to consider asking that doctor about treatment for that first-line therapy?

Dr. Cristina Gasparetto: It’s a long discussion when we meet a new patient with myeloma. We go through the myeloma presentation, and every patient is different. So we spend a lot of time talking about the initial presentation like Donna’s.

Unfortunately, some patients will present with more symptoms. Sometimes they have to be admitted to the hospital because the severity of the symptoms. It is a very heterogeneous disease. We spend a lot of time about myeloma, what myeloma can affect, and then the treatment and the goal of treatment.

I like to talk with the patient about the expectation, because like Donna mentioned, you start and then you have to go on. She was at Little Rock for 11 months, then she immediately said, “But then I have to stay on therapy.” Trying to set up some goals, there is the light at the end of the tunnel. 

We go from the intensity of the initial therapy. The achievement of the complete remission, like Donna mentioned, the minimal residual disease (MRD). Then we start the maintenance phase, where we hope to be able to control the myeloma for a prolonged period of time.

Of course, it’s not easy, and some patients will develop toxicity. Sometimes it’s what we call the cumulative toxicity because it can occur with time, with the continuation of treatment. I like to spend a lot of time about the disease and then the treatment journey that we embark on.

Stephanie Chuang: Thank you so much. There’s so many different kinds of people and, as you said, patient profiles. That conversation is so different depending on where you fit there. I know a big determinant, of course, would be like age, for instance, and other…

Dr. Cristina Gasparetto: Other diseases, other comorbidities. You can make your decision based on a lot of factors.

The relapse

Stephanie Chuang: Now we’ve set that landscape up. Donna, I know you didn’t have additional treatment through 2013 into the end of 2017, so about November. What happened at that point, when you realized you’re going to need to go back into treatment?

Rising myeloma markers (M-protein)

Donna K.: I’d been getting a monthly or a quarterly blood test. The longer you go without any evidence of the disease, the farther apart the blood tests are. The blood tests started showing an increase in my myeloma markers, so I knew something bad was happening. 

Waiting for the right moment to restart treatment

Finally, in 2017, after monthly tests, it was determined that it was at a point where we needed to respond to it. What I found is that in general, my oncologists — and mainly I’ve had two, Dr. Barlogie and Dr. Gasparetto — they’ll let you enjoy your life fully until it’s absolutely necessary to start the treatment. If the myeloma’s just growing slowly, they’ll give you a chance at not having to be tethered to a hospital.

Stephanie Chuang: Which, of course, is a huge decision. I understand in talking to a lot of people, both patients and oncologists, it’s that balance of quality of life — being able to live life — and then making sure that there’s no progression or attacking the disease.

When do you restart treatment?

Stephanie Chuang: Dr. Gasparetto, in general, what are you looking at when you want to decide whether to restart treatment for somebody?

High-risk myeloma

Dr. Cristina Gasparetto: We take in account, again, a lot of factors. One of the most important is how long the duration of the first response was and how aggressive the genetics of the myeloma. If we are dealing with a patient with high-risk myeloma based on the genetics, we generally need to be a little bit more aggressive, and we can’t wait because the myeloma will cause more damage very quickly.

Standard risk myeloma

If a patient has slow progression with what we call the standard-risk myeloma several years after the initial therapy, sometimes we watch and wait a little bit longer because we know the moment that we start therapy, there is no way back. We have to continue.

We follow some patients. For example, some patients evolving a few years after transplant, 4 or 5 years, sometimes we don’t start therapy right away. We watch and wait. If we start to worry that the myeloma is progressing more rapidly, that is when we need to start.

That doesn’t apply to all patients. If we have a patient with aggressive myeloma from the very beginning, we probably will not be able to wait so long. Again, we take in account a lot of factors and the disease, the patients, the prior therapies.

Treatment decision-making conversation

Stephanie Chuang: Again, thank you, Donna, for coming out sharing your story so openly, because I think it’s a great thing for someone to be able to see an example.

Here we are. It’s Dr. Gasparetto and Donna, and you’re having this conversation. What was that treatment decision conversation like for the both of you? We’ll start with Dr. Gasparetto, and then, Donna, I’d love to hear from your perspective.

From the doctor perspective

Dr. Cristina Gasparetto: With Donna, she was able to remain in remission even without the major maintenance for a few years, a fair amount after the transplant. Her myeloma was progressing slowly, but then at a certain point you need to initiate therapy no matter what, so when you have the hint that the myeloma will start to progress. 

Then you have to choose therapy based on the prior therapy received. Because Donna was treated at Little Rock, she went through the Total Therapy, and then she experienced a fair amount of toxicity with the Velcade, with bortezomib, with Revlimid.

You need to switch classes, you need to change, and you need to choose a drug that’s very effective but with a different type of toxicity. She could have gone back to the Velcade, but with the peripheral neuropathy, that was not an option. You have to modify the regimen again based on the prior therapy, along with the duration of the response and the toxicity.

Different factors in how patients respond to treatment

Stephanie Chuang: Wonderful. Normally, we don’t talk about age and things like that, but in this context, we do because we know that the median age of diagnosis for myeloma is somewhere like 69 or 70. Donna, may I ask when you were first diagnosed, how old you were? And then again at relapse?

Donna K.: You’re going to ask me to do math? It was 9 years ago, but what does that make me? 59. I was young. I mean, in terms of the lottery, I was young. I wasn’t the typical patient.

Dr. Cristina Gasparetto: Donna is very fit, and it makes a lot of difference. I always tell patients, “It’s not the age. It’s also your performance status, and that allows us to be sometimes more aggressive.”

We do have something in common, Donna and I. We still belong to the same cycling team. Being a cyclist, Donna was coming up in good fitness, and that’s the reason why she was able to cruise through the Total Therapy, with all the the aggressive therapy that she received. It makes a lot of difference.

Stephanie Chuang: That’s exactly what I was asking for, was the age and the overall fitness profile. Dr. Gasparetto, I’m just so glad you’re talking about that. Overall, for people just to understand, there has been a shift in terms of the paradigm, the philosophy. You’ve got to hit it hard to get that deep response or the best response up front.

Dr. Cristina Gasparetto: When Dr. Barlogie established the Total Therapy program, we didn’t have anything available, because even the thalidomide came out from his group or from his team. It was the first clinical trial in myeloma patients with thalidomide. It was published in 1999. Before that, we just had chemotherapy.

The idea of using the intensity comes from him. But now, 20 years later, we do have a lot of new drugs, new agents and new mechanisms of action.

Getting that diagnosis that it was back is so traumatic. It’s almost worse than the first time.

Donna K.
From the patient perspective

Stephanie Chuang: That’s so promising, and that’s part of why we do this, too. Thank you, Dr. Gasparetto. Donna, you had said that right off the bat when you were first diagnosed, you were 59, young, fit. You were ready to go, and you wanted the most aggressive approach. Then you went through this, even with the Velcade and the Revlimid, dealt with severe enough side effects with the neuropathy that you felt it’s a little bit too much.

Knowing all of that and with your experience with such an aggressive first-line treatment when this all happened, you’re talking to Dr. Gasparetto about how to attack the myeloma again. What was top of mind for you? What was most important? Were you thinking, “I want to be just as aggressive,” or were you thinking, “I also need to balance my quality of life”?

Donna K.: Getting that diagnosis that it was back is so traumatic. It’s almost worse than the first time. My first thought was I’m not going to even end the chemotherapy this time. If they want me to stay on maintenance for 20 years, I’m going to stay on maintenance, because it was so important to me to keep the beast asleep, if you will.

2nd- line therapy

Stephanie Chuang: Thank you for sharing that insight. I’m sure many people feel the same way you do. With that in mind, Dr. Gasparetto, what helped you decide on Donna’s next treatment of carfilzomib (Kyprolis), lenalidomide (Revlimid) and the dexamethasone?

Why choose carfilzomib?

Dr. Cristina Gasparetto: Donna and I started to talk a little bit after that. She was followed initially by another oncologist who was not super specialized on myeloma. We started to talk and have a conversation. The carfilzomib was the decision because of the toxicity that Donna had experienced with the Velcade.

Again, we are using the triple combination in a relapsed setting. At that point, she needed to go back to a triple combination. She was off therapy for a while, so she progressed off therapy. Circling back to the Revlimid made absolute sense. You could have gone back to the Velcade, but no, due to the toxicity.

The Kyprolis with the Revlimid and dexamethasone was a very important combination established. We have data from randomized phase 3 trials showing the effectiveness. The fact that it was effective and the durability of the response was quite impressive.

Again, the reason why we choose very aggressive combinations even in the relapsed setting was because we have learned with time that we can treat the myeloma suboptimally. The myeloma, unfortunately, will develop the resistance very quickly, so we want to go out of the gate very aggressively.

Cases for switching drugs and drug classes

Stephanie Chuang: I appreciate that, because again, it’s highlighting a different sort of shift here in the approach. We know we have different classes of drugs. We won’t go into all the names and everything, but if someone’s not responding well — whether it’s efficacy or side effects, it’s too harsh — do you replace that one?

Do you go to a different class of drugs in the combination, or can you use a different drug in that same class to see if it might be different for a patient?

What to do when patients develop resistance to drugs

Dr. Cristina Gasparetto: For a patient developing resistance, we like to make the class switch. They’ll go to the next generation. Like with the IMiDs, we go to the lenalidomide (Revlimid) to the pomalidomide, but we like to make what we call the class switch and try to attack the myeloma at a different level.

Switching treatments because of side effects

Stephanie Chuang: It makes sense to switch classes of drugs. One’s not working. If it’s not working with myeloma, how about with side effects? Is it the same?

Dr. Cristina Gasparetto: Every drug comes with baggage, right? We have learned with experience. It doesn’t apply to all patients, so it’s very interesting.

There are some patients doing phenomenally with a combination, and other patients that start to have toxicity from the very beginning. Sometimes we just have to try and then if it doesn’t work, we make the adjustments. Sometimes dose modifications is enough.

Sometimes we have to completely switch to a different drug. Again, it’s very subjective. It’s patient by patient, and we try. Even in a clinical trial, we follow the patient through when they discontinue due to certain toxicities — how many, do we have doses held or dose modifications? That is becoming part of treating patients with myeloma.

I have a phenomenal team at Duke. I have some incredible APPs (advanced practice providers), PAs (physician assistants) and nurse practitioners working with me. I call them my front line because they become so used to the drug.

There is a lot of education for the patients, too. We want them to be aware so they can come back to clinic and talk with us, so we can make proper dose adjustments. 

Even with the Velcade that Donna experienced, when it doesn’t work, it’s not written in stone. We’ve learned that sometimes holding the Velcade, making those modifications, we can manage the neuropathy.

It doesn’t work for everybody, so it’s difficult to say, “I’m going to do this, and it’s going to work.” It’s not fair.

I think the side effects of chemo are like childbirth; you forget it so you can go to the next one.

Donna K.
Side effects

Stephanie Chuang: But it’s on the table as an option. Whether it works is up to the individual patients. Donna, at the time, you weren’t working with Dr. Gasparetto yet, but then you’re on what they call a triplet, right? There was a 3-drug therapy. It was from November 2017 until June 2018. 

High level — I’m not going to try and make you remember everything, but this is your first foray back into getting treatment again — what was that experience like. and did you had a lot of side effects you were dealing with? If you did, what they were?

Donna K.: I think the side effects of chemo are like childbirth; you forget it so you can go to the next one. But yes, the first week when I was in chemo, I was just devastated and having a little pity party inside infusion. 

By the second week, I had this attitude that me and my oncology team were going to fight this together. I adjusted to the whole concept of it, and I don’t remember the specific symptoms I was feeling. From a Facebook memory, I know that it was making me feel not as good on the day or 2 after, and not as strong. 

But really the childbirth thing, I pretty much forgot all of the things that I didn’t like about it. What I did like about it is it worked for me. It knocked my cancer back. I started in 2017. By early 2018, my M-spike had gotten to zero.

Learning about remission again

Stephanie Chuang: You’d already had this resolve once, and then you’re hit again with myeloma years later. You go through therapy. You have that attitude of, “We’re doing this together,” which is great. When you heard that news of the M-spike hitting zero again, what was your reaction?

Donna K.: I was ecstatic. I was joyful. I believed I had a touch of invincibility and a heck of a lot of luck.

The longer you stay on maintenance, the longer the beast stays asleep. It’s hard putting it to sleep the first time, so you better keep it asleep.

Donna K.
What was the plan after remission the second time?

Stephanie Chuang: I was wondering about that just because you had gone through this experience before. What was it like the second time to be able to feel that? You had mentioned, “If they wanted me to be on treatment forever, I would be on maintenance forever.” What was the plan after that? That was about June 2018, according to your timeline.

Donna K.: In fact, I didn’t follow through with what I said. When it came to maintenance, as soon as I could travel, I did. I had one planned right in the beginning. By the time I was 3 months with MRD zero, I went off treatment to travel and to see things.

Today I think I would do that differently, just because the longer you stay on maintenance, the longer the beast stays asleep. It’s hard putting it to sleep the first time, so you better keep it asleep.

Stephanie Chuang: Thank you for sharing that. That’s great insight. I do want to go back to that, though, because you made a decision to to live life, which I don’t think anyone could feel badly about. That’s why we do this — to be able to do things in our lives. If you were to highlight the decision of what else drove you to do that, is there anything else you’d like to add?

Donna K.: This is relevant to the whole experience all the way up to today, but I realized that I don’t have to travel to Niagara Falls and Acadia National Park to live life fully.

One of the things I figured out this time around since I am tethered to weekly chemo, there’s a lot of stuff within a 3-mile drive from me. I’ve just made it simple for me to experience all of that without having to drive a long distance and live fully without giving up all that much, just different location.

Stephanie Chuang: What I’m hearing is, you figured out living life is really important. That’s the quality of life, tending to yourself and feeling very alive, but that you figured out how to do it without having to stop therapy.

Donna K.: Exactly. That was a big thing for me. I’m a slow learner. I just figured it out last June.

Stephanie Chuang: I’d say that’s fast learning for a lot of people, actually. We’re going to dive into that more a little bit later on, but I appreciate your candor and your honesty there, because a lot of people can learn from your experience.

The Power of Clinical Trials

What is it like being in a clinical trial? Hear in-depth details of the experience from Donna, as a patient, and from Dr. Gasparetto, as a doctor who fights for her patients to get in these potentially life-saving trials.

Donna and Dr. Gasparetto share more about the different lines of therapy, including the one Donna’s on (as of publication date) that’s gotten her back into complete remission: a selinexor + carfilzomib + dex combination.

Signs of the next relapse

Stephanie: Donna, you were then out of treatment from June 2018. Then November 2019 rolls around, so one year and some months later, you’re getting follow up. Did the M-protein spike happen again? What got you back into treatment?

Donna K.: Fortunately, it’s always the blood. I am so lucky that a simple blood test can say it’s creeping back up. I really am lucky because I know not everybody can just rely on a blood test.

Stephanie Chuang: What was the conversation between you and Dr. Gasparetto?

Donna K.: Before Darzalex, I had been getting guidance from Little Rock, and they were guiding someone who wasn’t a specialist in myeloma. She was only doing what they had said. 

I just decided that they were doing just what everybody else was doing, and there was no reason to rely on Little Rock. That was about the time our mutual friend insisted that I contact Cristina. He kept insisting, and then one night I’m sitting on my couch, and it’s Cristina.

I was a little rock star enamored here. I couldn’t believe she called me, which is just amazing, and she’s done stuff like that since then. That’s when I switched. We worked the whole next path together through our mutual discussions.

Figuring out next treatment

Stephanie Chuang: Now we’re in November 2019. Donna, this is the third time you’re dealing with news that you don’t want to hear. First, how did you process it this time around? Then in talking to Dr. Gasparetto, what was your part of the conversation? What was most important to you?

 Allogeneic blood or marrow transplant is when these stem cells are transferred from one person to another.

Donna K.: When I found out I was going through this again, I wanted an allogeneic transplant because I had this hope that I would get those 4 years or 5 years like I had after my stem cell transplants in 2012.

We talked about it, and you can’t just jump into an allogeneic transplant. It’s not covered by Medicare. There are all kinds of issues.

It’s risky. It might not work, but I kept that in the back of my mind because I wanted that time off, that time where I could forget I had cancer.

Decisions on next lines of therapy

Overview

Dr. Cristina Gasparetto: Donna went through the combination with Darzalex and then the CAR T-cell. We were putting a lot of money on the CAR T-cell. I’ve done allogenic transplants, and I believe in immunotherapy, but it’s not an easy decision. 

Deciding if an allogeneic transplant is right for someone

Let’s go back to the question, ‘Would I do that for myself?’ I have done it (immunotherapy) in certain situations, but you are always thinking about the risks that you are taking. The allogenic is a big, huge decision for several reasons.

We do have some good data, but it’s very limited because in reality, we have not been very successful with the allogeneic transplant in myeloma.

Donna went through another couple of treatments. Unfortunately, I believe the Darzalex was not so successful for you with the pomalidomide, right, Donna?

Donna K.: It didn’t work at all. My numbers continued (going up).

Dr. Cristina Gasparetto: She was feeling that. Then we attempted the CAR T-cell, which was immediately before COVID. She was the last patient that we were able to enroll in the clinical trial because we shut down everything.

That was okay for a while, because Donna loves to live outside. The CAR T-cell gave her the other opportunity of coming off the therapy for a little bit, but it didn’t last much. You never achieved a complete remission with a CAR T-cell. 

Donna K.: Never did.

Daratumumab + pomalidomide + dexamethasone

Stephanie Chuang: The Darzalex, Pomalyst and dexamethasone was the first triplet you went to. Dr. Gasparetto, just in terms of making that decision, why start off with that triplet?

Dr. Cristina Gasparetto: She was never exposed to daratumumab and isatuximab. The two CD38 antibodies are becoming so important. We’re learning that exposure earlier is becoming critical, and we’re able to achieve deep, durable responses. 

The Darzalex (daratumumab) is now subcutaneous (a shot), so it’s quite convenient. The isatuximab is not subcutaneous yet, but also you go from the weekly to the every 2 weeks administration, so you’re going to the doctor office not very often. It gives us the opportunity to still monitor the patient, so we don’t dislike that.

With the Darzalex, eventually patients are able to go to the monthly. In terms of going back to quality of life, it’s becoming an important combination. It made sense that she was treated with carfilzomib (Kyprolis) and lenalidomide (Revlimid). We go to the next generation IMiD, and we switched classes from the Darzalex.

What factors are most important to you in choosing treatments?

Stephanie Chuang: Donna, you want the myeloma to go away, obviously. But also there’s the quality of life: side effects, how it’s given (infusion, shot, oral) and how often you’re having to go in. How do these things weigh for you?

Donna K.: Going in isn’t the issue. The effects of the chemo are the issue, because you go in one day. You lose one day of the week where you can’t do anything you want, but then I have nausea and I’m not hungry for the next 2 days, so I really feel like 3 days of my life are spent dealing with cancer. 

Oddly enough, I can get to the point where for the next 3 days, I forget I have cancer. If I could take a pill and be checked every 2 weeks and keep this in at bay, I would be ecstatic. I would be happy. I wish Darzalex had worked for me, but my numbers just continued to increase. It didn’t slow them down. It didn’t stabilize them.

Clinical trials

CAR T-cell therapy

I think in the future, the CAR T-cell is going to be much more effective and hopefully more durable for a lot of patientsDr. Cristina Gasparetto

Stephanie Chuang: That’s why the both of you decided to talk about CAR T. Dr. Gasparetto, how did that come up for you?

Dr. Cristina Gasparetto: The CAR T-cell was not yet approved. It was in a clinical trial, and we had phenomenal results. The responses are incredible, and some of the patients able to achieve the minimal residual disease are doing quite well after the CAR T-cell. They don’t require additional therapy. 

Unfortunately, Donna didn’t achieve the complete remission, and that’s the reason why it didn’t last for a long period of time.

Upsides of CART T-cell therapy

The CAR T-cell is going earlier line, hopefully. We’re making modifications on the construction of the CAR. There are the bispecific CAR T-cells, so I think in the future, the CAR T-cell is going to be much more effective and hopefully more durable for a lot of patients and go earlier on. But this is immunotherapy — going back to the immune system, teaching the immune system to control the myeloma from coming back, attacking the myeloma.

Stephanie Chuang: It’s a hot topic, and I know as these developments happen, it’s also not just the therapy, but when you use it and modifying. 

Downsides of CART T-cell therapy

Dr. Cristina Gasparetto: One of the bad things about the CAR T-cell is that it’s not available for everybody, and you have to be able to catch the patient at the right time. Patients that can wait for the processing of the T-cells, and during that period of time have a disease that is relatively controlled. If not, we have to do bridging (chemotherapy). We have to start therapy.

Stephanie Chuang: The timing of it is so important. Donna, Dr. Gasparetto comes to you and says there’s this CAR T-cell therapy and also clinical trial. What were your thoughts when you heard about this possibility?

Donna K.: I wanted to get in a CAR T trial for 2 years. I read about it a long time ago, so I was very excited about it, and I really wanted to get into it. Then COVID hit, and if it wasn’t for Cristina, I wouldn’t have gotten in that trial. I don’t know what she did.

Dr. Cristina Gasparetto: I can’t say it aloud, but I don’t think I was the most favorite doctor at that time because I’m always advocating for my patients.

It was like the last patient in the clinical trial with COVID. I’m not saying more. We’re not going back there.

Stephanie Chuang: We’re not going to make you reveal it, but just keep doing it. Whatever you’re doing, just keep doing it. That’s incredible.

Donna, I’m curious to know. You are one of these patients, and you’re reading about what’s available. You’re more involved. What was it about CAR T-cell therapy that excited you so much?

Donna K.: I think the technology between CAR T has the potential to be how we address blood cancers in the future, so I was excited to be a part of it. It didn’t work for me, but for 5 months I tolerated the therapy extremely well. It was so easy. I had 4 days of 104 temperature. Other than that, they just monitored me, and I was waiting to get out of the hospital.

The process of CAR T-cell therapy

Stephanie Chuang: I know the letdown was it didn’t actually work, but the process of it, can you describe to people what you went through for CAR T?

Donna K.: In March of 2020, they took my blood. Just a warning for anybody who goes through this. Make sure you use the restroom before you do this, because you’re going to be hooked up to this giant machine for 4 hours, and you can’t drag that into the bathroom.

They sorted through my blood, got the T-cells out and then put the other blood back in. Send it off, let it duplicate well, modified it. Fight my cancer and then let it duplicate in a petri dish. I’m sort of exaggerating.

Then right before they were going to put it back in, they did some clean-out-your-system chemotherapy, and then they put it back in. 

I remember walking around the hospital saying, “I don’t think this is working because I feel fine.” This is around 4 o’clock in the afternoon. Around 8 o’clock, I’m like, “All right, I’ve got a temperature now. It’s working.”

I didn’t care that I had the temperature. I was in the hospital going, “Yes! It’s working! It’s working!” Because if you put something in your body that’s going to attack things that aren’t supposed to be there, you’re going to have the symptoms you would have of having a cold or flu, right? Your body’s attacking something. That’s what it was like.

Requirements of being part of a clinical trial

Stephanie Chuang: I love that you were thinking, “It’s working,” not, “I feel bad.” This is very empowering. Were you logging or journaling? Were you doing any of that?

Donna K.: I was actually literally interviewed every single day, and I had to count down from 100 by 7.

Stephanie Chuang: I’m like, “Can I do that now?”

Dr. Cristina Gasparetto: I don’t think I can do that! 

Donna K.: I was a math major. I can count down, so I had a way of doing it. But it was a mental acuity test, because it can affect your mental acuity. They were just making sure I didn’t have any issues.

Stephanie Chuang: You passed that with flying colors, and you made it through the 10 days. Then after that 10 days in the hospital, were you then journaling? Were you still interviewed?

Donna K.: I get interviewed for my current one. That one, every time I go in the hospital, someone from the research team comes in. Now with the current trial, I put in my daily symptoms. I wasn’t putting in daily symptoms, but I was interviewed every time I went in.

There’s a whole research team at Duke and a research team for every different trial, and you’ll get the same research nurse to come in and interview you.

Selinexor-carfilzomib-dex combination

Donna K.: I started a different program first, and it’s been effective. It’s Kyprolis (carfilzomib), Xpovio (selinexor) and dexamethasone.

It actually took my M-spike to zero again. It’s been zero for the last 4 months. Donna K.

It’s very effective, and I think in my mind I realized the allogeneic transplant is probably not going to happen, certainly not anytime soon. It was almost the same time that I think Cristina was at that decision point, and we kind of met in the middle, unknowing we were both getting there.

By June, I realized this is going to be my life. There is no allogeneic transplant waiting for me, and so I had to reset my expectations.

Stephanie Chuang: Thank you. I think some people are interested in what clinical trials are like, and I think it’s really important to demystify. Sometimes it reads, “science experiment,” as opposed to, “this is a very effective treatment, and I’m just letting them know how I’m doing on this trial.”

The letdown was it didn’t work for you. When that happened, I’d love to know from both of you how the conversation evolved into choosing the next treatment. Dr. Gasparetto, for you, what was top of mind right after the CAR T?

Dr. Cristina Gasparetto: The CAR T didn’t work like we wanted for Donna, but it worked a little bit. During the time, I remember she was doing okay. She really didn’t have a lot of side effects or symptoms. She achieved what we call a partial response. She had some response, but not a complete remission. Clinically, she was doing very well. 

Having to decide when to stop “watch and wait”

She was living life, but unfortunately, at a certain point, we had to make a decision about restarting therapy. We were talking at the very beginning that for some patients, we can watch and wait for the first relapse.

Unfortunately, when the myeloma comes back the second or third time, you really cannot wait anymore because the myeloma will start. It’s becoming more aggressive and definitely can cause damage, and very quickly. 

Selinexor triplet clinical trial (STOMP)

I love the Kyprolis-selinexor combination because selinexor is a new drug, it’s a new mechanism of action, it’s a pill, and it’s by mouth.Donna K.

Deciding to try the STOMP clinical trial with selinexor

That is the complicated part when we choose the next therapy for patients with myeloma. Now we have to go through all the lists. Donna now is not responding for sure to the pomalidomide or the daratumumab. She was exposed to the Velcade already and the Revlimid. 

One interesting thing is that she had a phenomenal response to Kyprolis, to carfilzomib. Then she stopped that, but not because her myeloma was becoming resistant. She was still sensitive to the Kyprolis.

When I was thinking about the next line of therapy, I thought that I could go back to the Kyprolis. At that point, we had availability on the STOMP trial with the selinexor.

A good triplet for patients who don’t respond to daratumumab

I love the Kyprolis-selinexor combination because selinexor is a new drug, it’s a new mechanism of action, it’s a pill, and it’s by mouth. Donna is taking it every week. It has a completely different mechanism of action.

Here you have the class switch. In the Kyprolis-selinexor combination, when we looked at the overall response, we also dissected (data). We looked at patients and what they received before, and it was clear that it was very effective, even in patients who had failed the Darzalex, the anti-CD38 antibody. Those are the patients that are more difficult to treat.

Their myeloma is definitely more aggressive, and it happened for Donna, too. She didn’t respond to the Darzalex, and now she had a phenomenal response with this combination. We circle back to the Kyprolis because she was still sensitive. We add a different mechanism of action, a new drug, and we have learned how to use selinexor over the last several years.

Selinexor’s first and latest approvals

Selinexor was first approved in combination with dexamethasone, single agent given twice a week, and was quite difficult for patients. There were a lot of side effects: nausea, fatigue, a lot of GI weight loss.

We have learned that that is not the case when selinexor is given once a week in different combinations. Donna has been on this combination now for a year. She was able to achieve the complete remission, which is insane because, let’s count it:

She got the Total Therapy, one. About 2 transplants with a big deal chemotherapy, and so that was counted one line of therapy. She got the VD-PACE and the consolidations and then some maintenance. Then she got carfilzomib-lenalidomide, too. Then she got dara-pom, and then the CAR T-cells.

So this is fifth line for her. Achieving a complete remission in fifth line is very difficult, so this is a very successful story with this combination. That’s the reason why I like it.

Getting monitored on a clinical trial

The carfilzomib is given once a week in the vein. She has a one-week break, but she knows that. My team is following her very closely. I think Melissa is your APP (advanced practice provider), right?

Donna K.: Melissa’s amazing.

Dr. Cristina Gasparetto: Melissa Martin is one of the APPs, the front line, and she’s monitored Donna very closely. We track labs. Every time she comes, she gets her infusion. Yes, that day and probably even the day after like she mentioned, the side effects that you can have, the nausea, the dexamethasone is still part of the equation in the selinexor. 

But then after, she is able to travel in November. We went on a trip together, but I didn’t see her. I was looking for her everywhere. We went to a biking trip.

Donna K.: I rode on one of my worst chemo days. I rode 30 miles on that bike on my worst chemo day.



Your reaction to a new line of therapy

Stephanie Chuang: Wow, that’s incredible. Just to hear all that. Thank you, Dr. Gasparetto, for describing this. I know it’s part of the STOMP trial, and we’ve talked about it before.

First, Donna, can you describe your mindset? First, when you heard about, “Selinexor. It’s novel, so it’s a different class. We’re going to give this a shot. This is another clinical trial.” What were your thoughts on that? And please describe how it’s been.

Donna K.: Whenever I get a new drug, I investigate it and then figure out how it works so that I could explain it to a 2-year-old. Once I’m convinced I understand how it works, if I think it’s pretty cool, then I’m behind it. And I was behind it.

Then I promptly forget how it works. I always think that the next one is going to be the one that works for me, the one that makes the difference. My life is a Rolling Stones song. I can’t always get what I want, but I get what I need, which is why I’ve been through 5 therapies and I’m MRD zero.

Side effects

It was challenging at first, and the longer I’m on it, the more of an issue I have the day after chemo, so that’s gotten hard. But for the last 2 months, on the third treatment of the month — which is when the toxicity is at its maximum — I wake up in the middle of the night and drive the porcelain bus.

I have little barf bags all over my house, and I just deal with it. I’m actually really good with those bags now. I know that I have mild nausea for the next 2 days, I won’t be sick to my stomach, and then I get the time off and I’m fine. Like I said, I literally forget that I have cancer. I’m doing a push-up challenge.

Dr. Cristina Gasparetto: It’s true you’re doing a push-up challenge.

Donna K.: I did 45 consecutive push-ups 2 days ago. I’m trying to get to 50, so then I have to switch to a pull-up challenge.

What I do is I try and make those other days even more special, do things that are really fun. Donna K.

The treatment regimen from the patient perspective

Stephanie Chuang: Dr. Gasparetto talked about the regimen. Donna, if you could, describe from the patient perspective what you’re having to do on this selinexor-Kyprolis-dexamethasone. How often are you going in? Taking the medicine?

Donna K.: I go in once a week for 3 weeks, and then I get one week off where I only take dexamethasone. There’s a tremendous staff that works with Cristina, and they’re the people I see every month for my monthly visit. I see Cristina if there’s a change of therapy or if I have questions, but otherwise I work with Melissa. The staff is wonderful.

I have as fun a time as you could have in oncology, but I’m always there for 4, 5, 6 hours, depending on how long it takes for test results to get back. I’ll repeat this for 3 weeks in a row. My symptoms get a little bit worse with each of the 3 symptoms, so it’s the worst the third cycle.

I feel fine the day of, nausea the second day, and the worst nausea the third day. Recently I’ve been getting sick to my stomach, just once a month in the middle of the night. It’s gotten worse, but I deal with it. What I do, is I try and make those other days even more special and do things that are really fun. I literally look at the paper and say, “I can go look at all the artwork in downtown Raleigh,” or I just fill those days with things so I know that I’m living.

Stephanie Chuang: I love that you make the most of all of that time that you have, especially with no side effects, so thank you for sharing that. 

Ways to manage through the side effects

I called it ‘Thankful Thursday’ for getting this thing that’s going to make me sick in the middle of the night, because it’s saving my life and it’s giving me time to enjoy things like watching my granddaughter compete in gymnastics this last Saturday.Donna K.

Stephanie Chuang: Donna, you had mentioned all of the side effects and how you’re largely free of them for this time, that you live almost like you’re cancer free. But there is a way that you learn also to deal with some of these things. I’d love for you to talk about that.

Donna K.: Whenever I’ve had a new cancer treatment, I always do something that I call the “Tummy Tango,” where you’re trying to dance between different kinds of GI problems:

  • being constipated
  • having diarrhea
  • being sick to your stomach

You’re taking all these drugs — Imodium A-D, Dulcolax — and you’re trying to figure out which one do you need this morning and should you take one proactively? I called it the Tummy Tango, but now that I’m in the selinexor trial, I call it the “Selinexor Salsa.”

Stephanie Chuang: Every patient deals with these things differently. There’s a different approach for you. You’ve done things like call it Tummy Tango, now the Selinexor Salsa.

Why is it important for you to be able to take that picture and come up with these fun names?

Donna K.: I used to get my chemo on Thursdays, and I called Friday “Fragile Friday” because the day after chemo, I have to remember to proactively take Dulcolax, to proactively take Lasix, certain things to minimize my symptoms.

Somehow the alliteration for all the days of the week came to me on the day I got my chemo. I called it “Thankful Thursday” for getting this thing that’s going to make me sick in the middle of the night, because it’s saving my life and it’s giving me time to enjoy things like watching my granddaughter compete in gymnastics this last Saturday.

The power of setting expectations

Stephanie Chuang: That’s life, and I really love that you’re highlighting this, Donna. What I’m hearing from you is you’re coming up with these names because they’re alliterative, so they’re easy to remember, and it’s almost like expectation setting right now.

I remember because there’s so many things that you’re going through as a patient and so many different days and pills and medications that you’re having to remember. This has helped you set those expectations, because the worst thing sometimes is forgetting and getting hit all over again.

Donna K.: That’s actually a perspective I hadn’t even thought about, but it’s so true. It kind of boxes in the chemo symptom days. I realized Thursday is thankful. I have a good day in oncology. I know that sounds crazy, but it’s a great nursing staff.

I have 2 days where it’s Fragile Friday, Sucky Saturday, because it boxed it in for me. I’ll just tell you the days:

  • Thankful Thursday (infusion day)
  • Fragile Friday (side effects)
  • Sucky Saturday (side effects)
  • Salvation Sunday (when my chemo symptoms disappeared)
  • Marvelous Monday
  • Terrific Tuesday
  • Wonderful Wednesday

It really made me hit on the fact that I had all these days that were great. I don’t know how I came up with the alliteration, but you’re right, I boxed in the cancer, so that’s only a couple of days for the chemo.

Am I fully living my life, and am I improving in some way? Am I growing and not just letting the cancer take over my being?Donna K.

Do you pay attention to the next promising drug or combination?

Stephanie Chuang: What I hear you saying is that you live in the present a lot, which is wonderful. It’s something I’m trying to learn how to do more.

I imagine it’s difficult not to think about the future, right? I’ve spoken with different people with myeloma, and they talk about “Why I’m always keeping my eye on what the next possible treatment could be.” What are you keeping your eye on? How do you approach that thought?

Donna K.: It’s funny that you said that. I never thought about it, but I don’t look that far out. I really don’t. If my numbers start going up, I’ll start looking, because let’s think about it. If this lasts for another year, there’s going to be a whole bunch more treatments out there. Looking at it now is almost a moot point because I don’t know that the treatment that’s going to work for me has already been developed.

I occasionally get into this slump of, “Oh crap, I’ve got chemo.” Now I get chemo on Wednesday, and I’ve got to be careful and make sure my barf bags are all around the house. But I don’t look off to the future too far.

Am I fully living my life, and am I improving in some way? Am I growing and not just letting the cancer take over my being? I do stay, maybe not in exactly the moment, but at least in the week.

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Living with multiple myeloma

Stephanie Chuang: I think that’s really helpful for people to hear, too. I appreciate that you’re acknowledging that there are still times where it’s like, “Oh, this is coming up, and I don’t like that this is happening,” and that there are negative emotions coming up because that’s the human experience.

Sometimes I wonder with people how they balance that. I think it’s important personally for me to acknowledge if I’m not feeling well, and let myself process that before I can move on. I don’t know how you feel about it.

Welcome back, nausea. I know you’re temporary. I know you’re working for me. Donna K.

A practice of gratitude

Donna K.: I am in love with philosopher Thich Nhat Hanh. I discovered him over 20 years ago, and I have learned to be thankful for having a non-toothache.

Sunday, Monday and Tuesday I have a non-toothache. I have no nausea. I can eat what I want. When I do feel the nausea, there’s several things you can do. Now, I will get depressed. I will exercise because I found the exercise, even though it’s hard because I’m weak from not eating, can make the symptoms less.

Ways to get through the side effects

I can also think, through the teachings of Thich Nhat Hanh, which I just think are marvelous, “Welcome back, nausea. I know you’re temporary. I know you’re working for me.”

Meditation, exercise, doing things to distract myself from the toxicities. You’re not thinking about nausea all the time if you’re wandering through a Christmas forest, which I did at the Roanoke Hotel a week or so ago. There’s lots of things I can do, and I have to work at it all the time. I have to work at it, but it’s worth it.

Stephanie Chuang: It’s inspirational for me personally. You had mentioned a term — it sounded like non-toothache?

Donna K.: People notice when they have an issue, but they don’t notice when they don’t have an issue. That’s what you want to pay attention to. Sometimes I will just realize — and thank heavens I was doing this long before chemo — where I’ll say, “Wow, I’m warm. I’m comfortable. I don’t have to go to the bathroom.” I just appreciate the fact that I don’t have a toothache, that I don’t have nausea, that I’m not cold.

We don’t appreciate those moments. As a rule, we just focus on, “I have a toothache or whatever,” and if we would appreciate those moments, there’s actually so many more of them. 

It’s about being in the moment. It’s about realizing that your life is good and you have all these good moments, if you count all those good moments, just like the days of the week. My little trick there is most of my days are good.

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Stephanie Chuang: I’m just letting that sink in. I love that. I’m going to take that for my day and through my week. My last question to you is… You had said something beautiful, and we’ll share your link to Caringbridge. I know you do a lot of writing, and I think it’s so wonderful that you put that out there. You talk about choosing how you can live each day.

Donna K.: All right, so I had cataract surgery, and I’m going to need glasses for this:

We may have cancer, but that doesn’t have to define us. It is part of our lives, but it doesn’t have to control all the minutes of our lives. So say, take that cancer and live fully.Donna K.

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Donna K.: I started thinking about this poster on a friend’s wall that said, you are either growing, or you’re dying. I’ve thought about that for over 30 years. It was back when I had just started my career, and I’m 68 now. It’s hard to stay put. 

If I am choosing to do the push-up challenge or to learn a new language or to do something that says I’m growing, then I’m not dying. If I stop doing that, I can just get swallowed up in that future you talked about that’s a year or 2 years or 3 years out, and I won’t let that happen. Cancer will likely take my life at some point, but it doesn’t get today.

The STOMP Clinical Trial

We started to see phenomenal response, and the response in the Kyprolis-selinexor is close to 80 percent, 70 percent plus, including in patients with daratumumab-refractory disease. Dr. Cristina Gasparetto

Stephanie Chuang: It’s so beautiful. Thank you, Donna, for being so open and sharing what’s going on and sharing what’s being said to you. I think people can learn from it. 

Dr. Gasparetto, we just came out of ASH (American Society of Hematology). There’s this big conference, and people are getting their updates on myeloma and treatments and combinations.

First, if you could talk about STOMP, where you are there with the STOMP trial, with the selinexor and the Kyprolis?

Dr. Cristina Gasparetto: When selinexor was approved in combination with dexamethasone, it was very important because it was clear the selinexor was effective and it was approved by the FDA for patients with what we call penta-refractory disease, in combination with dexamethasone.

In oral combination, penta-refractory, so that’s refractory to the:

  • IMiDs
  • proteasome inhibitors (carfilzomib, bortezomib)
  • Monoclonal antibodies (daratumumab, isatuximab)

That’s very difficult myeloma to manage, and there was a signal with selinexor as a single agent. About 26 percent of patients responded. That’s the reason why the FDA allowed and approved the drug.

Then it was, “Can we try selinexor in combination with different myeloma agents?” The STOMP trial was designed, with selinexor given in different combinations. Based on the prior therapy, so with pom(alidomide), with dara(tumumab), with Kyprolis, with Velcade.

BOSTON Clinical Trial

The combination with Velcade was quite effective, and that led to the design of the BOSTON trial: the phase 3 randomized trial comparing selinexor-Velcade weekly versus Velcade-dexamethasone biweekly. Because of that positive outcome, that combination is now approved in first relapse.

On the STOMP, we’re generating data for the big trials. We had multiple arms, as I mentioned with pom, Kyprolis, daratumumab, isatuximab, with everything. It was clear from the very beginning that we didn’t need selinexor twice a week, only once a week. It’s a new drug, a more manageable toxicity.

STOMP trial results so far

Dr. Cristina Gasparetto: We started to see phenomenal response, and the response in the Kyprolis-selinexor is close to 80 percent, 70 percent plus, including in patients with daratumumab-refractory disease.

That’s the reason why it’s becoming a very popular combination. Then we are learning how the selinexor is active even in patients with high-risk myeloma, with some of the more high-risk genetics:

  • 17 deletion
  • abnormality in translocation of chromosome 14
  • 1Q amplification 

It’s definitely effective. It’s given weekly. It comes with some of the GI toxicity, the nausea, the fatigue, but definitely mitigated by the fact that it is given only once a week.

»MORE: Read our interview with a genetic counselor

Selinexor combination dose adjustments

Dr. Cristina Gasparetto: The first 2 months are the most important. It’s the loading. Then we can make adjustments.

I think Donna is taking a little bit of a lower dose of selinexor than when we started, just to adjust based on their side effects, and it’s still working.

With the STOMP trial, again, it’s a trial that was designed to test selinexor in different combinations. Then there is going to be an evolution of the most powerful combinations. I was fortunate to be part of the trial here at Duke, and I treated a lot of patients. I’m glad that we had that combination available for Donna because this is is a very powerful combination.

Everybody has their own journey. Every cancer is different, every chemo is different, and every person is different. I want the people who see this to realize that they can choose to live as fully as possible. Donna K.

STOMP trial recruitment

Stephanie Chuang: Thank you so much, Dr. Gasparetto. Is it still recruiting? What if people are interested in it at Duke? Is it still going on?

Dr. Cristina Gasparetto: It’s still going on. We are reopening this combination with some dose modification. Right now, we don’t have any availability on this combination, but soon. Again, we are testing with the new drugs, so we’ll have hopefully other available combinations soon.

Stephanie Chuang: Okay, so we’ll stay tuned. Thank you both for taking the time today to share both of perspectives. I think it’s incredibly important for people to learn from. Thank you so much.

Dr. Cristina Gasparetto: Thank you.

Stephanie Chuang: Donna, is there any last thing you want to say to the people who are watching and reading your story and what you shared with us?

Donna K.: Everybody has their own journey. Every cancer is different, every chemo is different, and every person is different. I want the people who see this to realize that they can choose to live as fully as possible.

They might have physical constraints because multiple myeloma can do that to you. But there are other ways you can grow, things you love to do, and just keep working on it one step at a time. Keep challenging yourself.

Stephanie Chuang: Donna, thank you so much. I so appreciate you spending all this time sharing your story. I look forward to hearing more, and we’ll definitely post the link to your Caringbridge and anything else you want to share.

Donna K.: All right, thank you so much.


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Relapsed/Refractory Multiple Myeloma Stories


Donna K.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: None, found by blood tests
Treatment: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T, selinexor-carfilzomib

Connie H.



Diagnosis: Multiple myeloma, relapsed refractory
1st Symptoms: Chronic bone pain
Treatment: IV Chemotherapy, CAR T cell therapy

Elise D.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone

Beth A.



Diagnosis: Multiple myeloma, relapsed/refractory
Subtype: Non-secretory (1-5% of myelomas)
1st Symptoms: Extreme pain between shoulder blades, sternum, head, burning sensation
1st Line Treatment: VAD chemo, radiation, stem cell transplant
RR Treatment: 8 chemo regimens, successful combo→selinexor+bortezomib+dexamethasone
Scott

Scott C.



Diagnosis: Multiple myeloma, relapsed/refractorySubtype: IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatment:
Clinical trial, chemo, kyphoplasty, stem cell transplant
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Categories
Active Myeloma CyBorD Cytoxan (cyclophosphamide) dexamethasone Kyprolis (carfilzomib) Multiple Myeloma Relapsed/Refractory RVD Selinexor Velcade

Elise’s Refractory Multiple Myeloma Story

Elise’s Refractory Multiple Myeloma Story

Elise was working and raising two young kids when she was diagnosed with refractory multiple myeloma, a type of blood cancer.

In this video series, she shares every part of the myeloma experience so far, from how she got diagnosed to being a part of a clinical trial (selinexor + carfilzomib + dexamethasone) that’s been working, to diving into how she has been able to live with myeloma.

Explore her incredible 4-part story series below. Thank you so much for sharing, Elise!

Elise timeline
  • Name: Elise D.
  • Diagnosis (DX)
    • Refractory multiple myeloma
  • 1st Diagnosis:
    • Age at DX: 34 years old
    • Symptoms:
      • Extreme pain in lower right back (for a couple years)
      • Numbness in groin
    • Tests for DX:
      • X-ray finds tumor in sacrum measuring 9×6 centimeters
      • MRI results show what looks like a giant cell tumor
      • PET scan reveals 1-cm lytic lesion, prompting start of treatment
    • Treatment
      • Chemotherapy
        • CyBorD: cyclophosphamide + bortezomib (Velcade) + dexamethasone
        • RVd: lenalidomide (Revlimid) + bortezomib (Velcade) + dexamethasone
      • Clinical trial
        • SKd: selinexor (XPOVIO) + carfilzomib (Kyprolis) + dexamethasone
Table Of Contents
  1. Elise’s Introduction
  2. First symptoms
  3. Getting misdiagnosed over and over again
  4. Speaking up for yourself as a patient
  5. What tests and scans did you undergo for the preliminary diagnosis?
  6. How did they determine the details of your myeloma?
  7. Did you get a second opinion?
  8. What was the treatment?
  9. Describe the moment you got the diagnosis
  10. How open are you with your kids about the cancer?
  11. What was your first-line treatment?
  12. Describe how you and your doctor decided the first lines of treatment
  13. What were the results of first-line treatment?
  14. Getting a second opinion
  15. What led to pursuing another treatment for you?
  16. Why haven’t you tried a stem cell transplant?
  17. Navigating myeloma treatment options
  18. What was your reaction to the possibility of being in a clinical trial?
  19. Describe what it’s like being in a clinical trial
  20. Part of the STOMP clinical trial
  21. The Karyopharm interview
  22. A breakthrough on a clinical trial
  23. Describe the side effects
  24. What helps you with the nausea?
  25. Other tips on managing side effects
  26. Lowering the steroid dose
  27. What impact has this new treatment had on your life?
  28. What’s the importance of patient self-advocacy?
  29. What’s been the hardest part since your cancer diagnosis?
  30. What has helped move you through the most stressful times?
  31. The importance of finding your cancer community
  32. What has been your approach to researching myeloma?
  33. How do you and your husband approach life with cancer?
  34. Have you had any financial stresses in paying for cancer treatment?
  35. Monitoring the body for any signs of myeloma
  36. Dealing with the cloud of another possible relapse
  37. What’s your message for other patients and caregivers?

Thank you to Karyopharm for its support of our educational program. The Patient Story has full editorial control of our content. The interview has been edited only for clarity.

This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Elise’s Introduction

My name is Elise. I am 35 years old. I live up in Nova Scotia in Canada. I’ve lived in Nova Scotia my whole life. I’ve done some trips and did a couple of little adventures when I was growing up. 

In my early 20s, I lived in Montreal for a little while and in Calgary for a little while. But all roads always lead back to Nova Scotia, so I’m back here. 

I am a medical transcriptionist. I’ve been doing this for approximately 9 years now. I would say I do enjoy my job. I haven’t been working since my diagnosis of myeloma, but it wasn’t actually myeloma mediated.

It was more COVID mediated because I was actually diagnosed right around the time that it happened. The company that I work for, the hospital, they just shut down their regular type of clinics, elective surgeries, and stuff like that. 

I’ve been working very, very little since then, but I do intend to go back to work very soon. I actually just started thinking about that the last couple of days, to be honest with you. That’s been kind of exciting in my world. 

I have two kids. That’s extremely important. I have a seven-year-old son and I have a one-and-a-half-year-old daughter. They keep me very busy. I’m married to my husband, Dana. He’s wonderful.

We love to go camping. We love to go fishing. We love to go to the lake. We love to go to the ocean. We love to go to the park. We are very outdoorsy people. We are always out and about and doing fun things every day.

We’re always out with the kids and trying to just live and enjoy life make the best of everything.

VIDEO: Multiple Myeloma Symptoms

First symptoms

I went back to 2018 because I feel like that’s a very, very important part of my story. I didn’t get my official diagnosis until July 2020. That’s why this is so, so significant to me. 

I started off with just back pain. I had lower back pain on my right side. It was irritated, and I’d get numbness and a little bit of tingling soreness. I went to go meet my doctor back then in 2018, and we had a discussion. 

She decided that it would be a good idea to go to physiotherapy, so that’s what we did. I got my referral to physiotherapy. I did a few sessions, and things actually started to get better at that point, probably because I was able to get the inflammation down. I just kind of went back to living life. 

Basically, at that point, things were getting better. My back wasn’t bothering me so much, so I just went back to living and working. At the time, I had my son. He was about 5. So I went back to living. 

Symptoms continue

We decided we were going to have another baby, so we did that. We had a daughter. I was pregnant with her in 2019, and she was born in November. Toward the end of my pregnancy, I started to experience an extreme amount of pain in my lower back, which radiated basically up to my head. 

I remember thinking to myself, “Okay, this is my sciatica acting up, so I’m just going to go to massage therapy and try to work it out.” That’s what I did; I went to massage therapy. I did that three weeks in a row. I didn’t understand why it wasn’t relieving my pain, but I was about to have a baby, so I wasn’t thinking about anything. I was just thinking about having a baby. 

I had my daughter. The pain got better, obviously, because I didn’t have a human growing in me anymore. The pain got a lot better. 

Then, come February 2020, I started to get symptoms again of lower back pain. The quality was a little bit different at this time. It was more sharp. I had a lot of groin numbness. My glute would go numb. That’s kind of where it began.

Getting misdiagnosed over and over again

I thought again, “Okay, this is just my sciatica.” We’re going on three years of thinking I have just sciatica issues here. I definitely went to the doctor this time and got sent down the same path of, “This is just your sciatica acting up. Let’s send you to physio.” 

I went to physio, and she diagnosed me with sacroiliac joint dysfunction. All they saw was a young mom who just gave birth with back pain, so this is the diagnosis they gave me. They said, “It’s probably just imbalanced.” That’s what happened there. I did the physio, and that didn’t work, of course. 

Then I thought, “Let’s try some chiropractic work.” I went to see a chiropractor. We did that for a good two or three months. When I look back at it now, I think, “Wow, I am so glad he didn’t break me,” because he did a lot of manipulations on my back. That’s terrifying. Thankfully, he didn’t injure me. That didn’t work, of course.

Speaking up for yourself as a patient

I went back to my doctor again. I said, ‘There’s something not right here. We need to go to imaging next.’ 

So that’s what we did. He sent me for an X-ray, which revealed a big tumor in my sacrum that was approximately 9 by 6 centimeters.

Who would have ever imagined? That’s when everything started. That’s when all the tests took place. They sent me down that road. 

»MORE: How to be a self-advocate as a patient

What tests and scans did you undergo for the preliminary diagnosis?

They wanted to rule out metastases. At first they thought, “She probably has a primary cancer somewhere else that metastasized to her spine,” or it was, “She has sarcoma, some sort of a bone cancer.” That’s what the thoughts were at that time.

I had my MRI, my CT scan, X-rays, mammogram, all of that. The preliminary report of the MRI said that I had a giant cell tumor, which is a benign, aggressive tumor. It’s very destructive, but it is benign. 

To confirm the diagnosis, they decided to send me to an orthopedic oncologist. I saw him. He did a biopsy of my sacrum, which was horrific because they actually took about a good-sized piece of it. It was horrific. 

I developed a hematoma because of it. It was just dreadful. Eventually the biopsy came back showing that there was plasma cells. 

That’s when the diagnosis of multiple myeloma came up. That’s when I was officially diagnosed with myeloma. At that point, they weren’t sure if it was a solitary or if it was systemic.

»MORE: Patients describe dealing with scanxiety and waiting for results

How did they determine the details of your myeloma?

I had my PET scan. That was the next investigation, to be referred to hematologists and to go for my PET scan. I did that and, of course, all the myeloma workup.

The PET scan revealed a one-centimeter lytic lesion just above it. That was just enough for them to say, “Okay, this is systemic. We need to treat it.” 

Did you get a second opinion?

I was in denial. I didn’t want a second opinion. I just wanted to make sure I didn’t want to jump on the chemo. I didn’t want to go on the treatment band yet. 

I was still hoping for just radiation to clear things up. Then I could just go back and not worry about all the treatment and stuff. I requested a second opinion before I started treatment. 

While I was waiting for that second opinion, it got really bad. Really, really bad. My back, my sacrum, actually ended up fracturing in September. 

Just the pressure of it was just too much, and it just started breaking the bone. I was admitted to hospital in September of 2020 for 4 days, and then we started treatment right away.

»MORE: Patients share how they processed a cancer diagnosis

What was the treatment?

CyBorD, which is standard of care in Canada:

  • Cyclophosphamide
  • Bortezomib
  • Dexamethasone

VIDEO: Cancer Treatment Decisions

Describe the moment you got the diagnosis

I actually got an email from my orthopedic oncologist. I went, “Wow, I knew it was malignant.”

I knew it was malignant because I went up to see my orthopedic oncologist, and he mentioned to me that it was definitely malignant and he was just waiting for the pathology to come back. My husband was with me that day.   

At that point, I didn’t have a diagnosis of multiple myeloma per se. I just knew it was going to be cancer. My husband was with me at the time, but I thought I was going to die. “Yeah, okay. I’m about to die. I’m about to go down this terrible nightmare that nobody wants to go down.” 

»MORE: Patients share how they processed a cancer diagnosis

Then my mind immediately went to my kids, and then it was just really bad. It was every mother’s worst nightmare, really. 

I just remember the drive home with my husband was the worst drive of our lives. I remember just thinking, “This is it. I’ve got 5 years, maybe a few years with my kids.” That’s pretty much how I reacted to the diagnosis.

How open are you with your kids about the cancer?

To be honest, I’m not very open. My son is seven, and my daughter is just one-and-a-half. With my son, I decided I don’t want to scare him with the word “cancer.” 

How do I speak to my son? He knows that I hurt my back. He knows that Mommy has a bad back, and he knows that Mommy needs to go to the doctor and take medicine to get better. 

I’ve left it just on a need-to-know basis. Keep it simple. It’s worked perfectly. 

What probably actually helped me a lot is when I got diagnosed, I thought, “No, this is crazy. I need to keep my life going as normal as possible even while going through all this nonsense.” I’ve worked extra hard, maybe put in a little bit more stress on myself. 

My kids are my world, and I didn’t want anybody’s lives to be disrupted by this. I’ve just worked really hard to just try to hold it together, to keep it together and just try to keep daily life as normal as possible for me and for my family.

If I would have had to go through a transplant, I would have had to explain a lot more because I would have been away. I’ve been able to pretty much stay close to home, and there have only been a couple of overnight visits.

»MORE: Parents describe how they handled cancer with their kids

What was your first-line treatment?

I remember the cyclophosphamide. I used to get the worst hot flashes. I would feel really feverish with that.

Describe how you and your doctor decided the first lines of treatment

T standard of care in Canada is to do CyBorD first and then go to transplant. I had private insurance, so my doctor at the time said, “I want to try to get Revlimid covered for you because it’s a better treatment.” So that’s what we did. 

We went through my insurance company, and finally they approved it for me. That’s when we switched to the RVd. We did the RVd for three cycles, and then I had a PET scan November 30th. 

What were the results of first-line treatment?

The PET scan showed that my plasmacytoma was stable, which was great, and that the lytic lesion was dead. There were no more light chains lighting up anymore. 

However, my blood work initially went down with treatment, and then it just slowly started to kind of climb back up a little bit. It wasn’t staggering or anything, but it just wasn’t going in the right direction. 

Getting a second opinion

At that point, I had still been waiting for my second opinion, which I still hadn’t gotten. I had that second opinion. It was set up for December 16.

I got my PET scan and met with my previous doctor, who said, “We’re just going to follow the trend and go from there.” 

I also had my second opinion coming up, so I met with my second opinion doctor. At that point, he said, “It looks to me like the treatment is not working as it should.”

He said, ‘I have a clinical trial, and I want you to go on it.’

VIDEO: Current Clinical Trials

What led to pursuing another treatment for you?

It’s my immunoglobulin A (IgA) nephropathy that we follow. My IgA was going down, and then it slowly started to climb up a little bit. That’s when the treatment decision was made that I should be on something stronger. 

To be honest, I’ve never really gotten a full answer about that. They did say that perhaps it was refractory, but nobody really knew for sure. We just knew that we just needed to move on to something different. 

Why haven’t you tried a stem cell transplant?

That’s a loaded question because that is one that I’ve been going back and forth on for months now. It’s my doctor who sees it as a treatment, not a destination, if that makes sense to you.

With all the treatments out there right now, he says we don’t have to go to transplant yet because there are other things that we can do that are less invasive.

Also, he was a little bit worried that I would go through the transplant and not get a long enough remission, so he didn’t want to put me through all that for the possibility that I might only get remission for a year or two years. 

I think maybe he was looking at me as not the typical patient for him at all. I think he’s taking a bit of a different approach with me. I still kind of worry about it a little bit. I still wonder, “Should I do the transplant?” 

I’m almost in complete remission. A lot of people say that’s the best time to do it because then it deepens the response. But there’s really no proof of it. Nobody really knows. I’m okay with not doing it. I didn’t want to do that anyway.

Navigating myeloma treatment options

I think it’s very confusing for myeloma patients all around. Absolutely. It’s been completely confusing. I’m constantly questioning, “Am I making the right choice? Is my doctor making the right choice?” I wish it was more clear cut, because it definitely puts a lot of stress on the patient.

There’s somebody on this trial that I’m on. I don’t know if they’re taking Kyprolis, but they are taking selinexor, and they’ve been on it for 4 years now. 

As much as I don’t want to be in continuous treatment, I think, “Okay, it’s either that, or I go down a stem cell transplant, and there’s just so many unknowns with stem cell transplant.”

At least I know what my trial is. I know what to expect. I know the side effects right now. With transplant, it’s like a whole other thing.

What was your reaction to the possibility of being in a clinical trial?

I was extremely reluctant at that point. I’m still coming to terms with being diagnosed with cancer, let alone now I’m going to subject my body to a clinical trial. I was terrified. I was horrified.

I thought about it, and I thought, “What have I got to lose? Let’s go for it.” At my second opinion meeting, I said, “Yes, let’s do it. Can you please be my doctor, too?”

He said, yes, he would, which is actually not an easy thing to do here in Canada, because usually you get assigned a doctor and that’s your doctor. To get another doctor was really lucky. I was really lucky because he was a very, very good myeloma doctor, one of the top ones in Canada. 

I feel very fortunate that I got into his care. It was pretty incredible. At that point, he said, “Okay, take Christmas off. Take New Year’s off. Have a few weeks with your family, and we’ll start off at the end of January.” 

That’s what we did. We started at the end of January. We started the selinexor, the Kyprolis and the dexamethasone.

Describe what it’s like being in a clinical trial

Initially, when I first started on the clinical trial, there was a lot of testing because you have to be healthy enough to get into these clinical trials. Then you’ve got to be too sick, too.

I don’t know. It’s kind of weird because usually you have to either relapse or be refractory or something. That’s where they said I was. They said I was refractory at that point. That’s how they got me into the clinical trial. 

There was a lot of testing. I had to get my heart tested. I had to have preliminary CT scans,  X-rays, lots of blood work, and I had to meet with the nurse coordinator. That’s how it began. Just the first day, day one of my cycle one, it was a big show at the hospital. There are lots of nurses ticking off boxes, making sure everything is all good. 

I have my own clinical trial nurse, who is amazing. She is incredible. That’s different to being in a clinical trial. Usually you just have access to a nurse’s line. Then you have to leave a message, and they get back to you within 24 to 48 hours. I have access to Judith, who is my nurse, and she will usually get a hold of me within like an hour unless she’s in clinic or something.

I’m very, very fortunate there, too. That’s a bit different clinical trial-wise. That’s how the clinical trial started. They pay for my expenses, so that’s nice. 

Part of the STOMP clinical trial

Editor’s note: For more information on all clinical trials, check out the FDA Clinical Trials site.

STOMP = Selinexor and Backbone Treatments of Multiple Myeloma Patients

You may have heard of the STOMP trial. It is selinexor, but you can use it in combination with other drugs like Kyprolis or Revlimid. 

They’re trying all different combinations. This is definitely not a common treatment.

The Karyopharm interview

I made a major breakthrough for myself and many patients down the road.

I traveled two hours one way for treatment, so that’s 4 hours of driving every week. I am involved with the International Myeloma Foundation, the IMF.

I run a support group called MM Families. It’s for patients with young children who have multiple myeloma, so my name is kind of out there a little bit. People know who I am. Karyopharm heard of my story, and they wanted to do a roundtable on me, which I thought was super interesting. I agreed to it. 

At the meeting, they asked me what are some challenges that I have to being in this trial. I told them the drive time consumes my life a lot. I would literally wake up, get the kids off to school and day care, jump in my car, drive two hours, stay there for two hours, drive home for two hours, pick up my kids from school and get on with the day for all that crazy stuff. It was a huge challenge for me. Huge.

At that point, they said, “We’re very sorry, but that’s just how facilities work. That’s how clinical trials work. You have to be at a certain facility.”

A breakthrough on a clinical trial

I thought, “Well, I guess I’m going up there forever then.” But randomly out of the blue, my nurse called me about a month ago, and she said, “I just got the strangest email. I got an email from Karyopharm, and it was an internal email that they sent out to the entire company.”

She said, “They all were just so moved by your story and everything you told them, and they agreed to let you go to your local hospital to get your trial drug.” They agreed to let me, which apparently drug companies have never done before. 

I’m the first person that they’re actually allowing to treat closer to home. I was just so excited. It was amazing.

Then I got a phone call, and they said, “The hospital is really pushing back on this one.” I thought, “Oh great, they said no.” Everybody said yes, but the hospital didn’t feel comfortable administering the drugs because they had never administered them before. 

That was kind of a blow, but my nurse said no. She said, “I’m going to work on this. You just don’t worry. I’m going to work on this.” I got a call about two hours ago, and she said, “Well, we won.” 

She met with everybody. She met with the head of nursing, the head of all the oncologists at the hospital. She met with everybody. They all got together, and they figured it out. Now I get to go back to my local hospital.

Describe the side effects

The side effects have been very, very difficult. I’m not going to lie. I still struggle sometimes. It always seems to be on Day 1 of my cycle. 

Day 1 is usually pretty terrible. Then usually Day 8 is a little bit better. Sometimes I won’t even have symptoms by Day 15. Maybe I’ll feel a little tired, a little bit nauseous. But nothing like Day 1. 

It seems to be something about that break. I think it’s the fourth week off, giving my body that break, and then going back into it. How I’ve managed side effects is a lot of anti-nausea medications. To be honest, it still doesn’t take care of all of it. 

»MORE: Cancer patients share their treatment side effects

What helps you with the nausea?

I take a lot of ginger. I’m constantly drinking ginger tea and taking ginger pills. I take Emend. I also take Zofran and metoclopramide for my nausea.

I’m going to be honest, the nausea’s pretty terrible. It has almost made me cave a few times, almost made me give up. It’s been really hard to deal with the nausea.

Other tips on managing side effects

I’ve never vomited. I’m always just nauseous, and yes, I do have decreased appetite for a maybe two to three days afterward. I always make up for it in the times that I’m feeling really good. I’ve managed to stay stable in my weight, thankfully. 

That’s one really big thing that I actually do, too, that I forgot to mention is nutrition. Nutrition is huge in my life. Huge. I do micrograins and wheatgrass shots, and I do some supplements. I think that has helped me stay at a stable weight just because I’m packing myself full of as much nutrition as I can and the best kind of it.

I took a little bit of time to adjust, but now that I do it a lot and I eat all the greens, my body craves it now and I don’t mind it anymore. It makes me feel better. 

Lowering the steroid dose

My dexamethasone was lowered. They agreed to lower it to 20 milligrams. My doctor did say that I could divide it if I wanted to. I wonder if I did that, if it would make things a little bit more tolerable.

The biggest thing is it causes two nights of not being able to sleep well. I do feel like I tolerate it better, and I don’t get those mood swings type side effects like I used to get so much if I took it all in one day. I definitely think there’s an advantage to breaking it up.

What impact has this new treatment had on your life?

I really wish they could figure out how to give the selinexor without the nausea, because it’s doing wonders for me.

I’m almost in complete remission now. I have no sign of it on any of my blood work anymore. Everything’s completely normal.

I believe my plasmacytoma on my sacrum is completely healed. I don’t feel pain. I haven’t taken a narcotic in two weeks now. 

I took a huge turn the last month. I barely feel any pain anymore, just a little bit of tightness. My heart feels funny when I walk. I’m missing a piece of my bone there, so that’s going to take a little while to come back. 

I don’t know if it’s selinexor or if it’s the Kyprolis or the combination. I don’t know. But whatever it is, it’s working.

VIDEO: Living with Multiple Myeloma

What’s the importance of patient self-advocacy?

I think it’s extremely important to advocate for yourself. I’ve been doing nothing but advocating for myself since my diagnosis, and I feel like everybody has to do that. 

I switched doctors. My first doctor, I felt like he was too busy for me, and I just didn’t feel like he was caring for me. 

That’s why I knew I needed that second opinion, and I knew I needed to get another doctor who was going to take my care seriously and who I felt safe with. 

Absolutely, you have to advocate for yourself if you’re not feeling comfortable in your situation. It’s enough that we have to deal with cancer. We shouldn’t have to deal with anything else when it comes to the care we’re getting. We should just be receiving the best care, period. It’s so important.

I always make sure that I have lots of questions. I always make sure that if I have lots of questions, that I give them a heads up that I have lots of questions. 

»MORE: How to be a self-advocate as a patient

What’s been the hardest part since your cancer diagnosis?

I still struggle. Still. My kids are everything. They’re my entire world. Honestly, I never thought about myself at all through any of it. It’s easy for me to leave; this is easy for me not to be here.

What has helped move you through the most stressful times?

I’ve been doing nothing but seeking out ways to feel normal. I do exercise a lot. I meditate. I learned to meditate, especially early on in my diagnosis. I don’t do it as much anymore because I am more settled than I used to be. 

I sought help from a therapist, a psychologist. I joined support groups. I created support groups. I literally just surrounded myself in support and all the support that I could get. I surrounded myself in it. 

»MORE: Read other patient experiences on yoga and meditation

The importance of finding your cancer community

That’s been my greatest gift since my diagnosis: the people who I’ve met throughout this journey so far. I’ve met some other young moms, and we connected. We talk almost every day; we check up on each other. Just speaking to one another makes us feel like we can live this life. We can do this. Support groups are huge. 

If I’ve tried everything, I’ll just go to my kids, and I’ll just sit with them and try to be in the moment with them. I just hug them and kiss them and/or I’ll take them to the park or just anything to get my mind off of what I’m stressing about. I’ve done a lot.

What has been your approach to researching myeloma?

I need to know everything, which is not good. I’ve learned that it’s not good. I don’t need to know everything. I had a moment of clarity two nights ago lying in bed thinking that I had become too obsessed with it. 

I think I’m too absorbed in it, with reading the articles and the groups on Facebook. I’m too consumed. I decided two days ago that I’m going to take a really big step back. A huge step back. 

I’m going to just stop thinking about other people and what they’re going through and their stories and their treatments. I’m going to stop thinking about all the articles that come out, because I’m just searching for an answer that’s not there, basically. 

All it’s doing is stressing me out, so I’ve decided that I’m going to take a big shift. I’m going to shift how I deal with all this, because I just can’t keep operating in this way.

How do you and your husband approach life with cancer?

That’s a good question. How do we deal with it together? I don’t know. We just try to keep things moving. We just try to keep life as normal as possible, really. I have a lot of support from my family, so that helps a lot.

My mom, my sister and my dad — I have all those people close to me. That helps in how we deal with it, because they come around a lot. We just try to keep things going as normal as possible.

 I think we kind of just not we try not to talk about it too much. I guess we kind of just try to forget about it in a sense.

When you have a family, that’s a good way to handle it as long as you’re getting what you need and getting enough support. That’s the biggest thing. I’ve got tons of support. I am very, very fortunate in that sense.

Have you had any financial stresses in paying for cancer treatment?

No, not in Canada, no. We’re pretty lucky here. The only financial drain is I haven’t been working. That obviously affected us.

Actually, my clinical trial pays for everything. They pay for all my gas and parking, and then a little extra on top of it, so I actually get money from being on the clinical trial every month.

They’ll even pay for my hotel if I don’t feel like driving up in the morning. They said any time I wanted to just stay in a hotel, I could do that, too. I’m pretty fortunate. I feel very fortunate.

»MORE: Read more about benefits available

Monitoring the body for any signs of myeloma

I’ve never had kidney problems. I’ve always been like that, very healthy. Everything’s been really great. All my organs are great. It’s just the bone lesion. That’s all I’ve ever contended with. 

A lot of people I know are diagnosed young, in their mid-30s. We are all a little bit similar in that sense because I know another guy with the same thing. 

He had a plasmacytoma in his sacrum in his mid-thirties 20 years ago. Also, he’s never had nothing with his kidneys either. Nothing. It was always just the bones, and that was it.

Dealing with the cloud of another possible relapse

I’m really struggling with this. I’m healthy. I’m almost in complete remission. My back feels great. You think I would be happy and jumping up and jumping with joy. 

I’m not, and I’m like, “Am I broken? Is there something wrong with me? What happened here?” I should be happy. I should be celebrating. But I can’t. I just don’t know why.

What’s your message for other patients and caregivers?

I would say to them that you cannot change your path, but you can change the way you react to it.

That is how I live my life now. That is my biggest piece of advice I can give to anybody.


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Multiple Myeloma Stories


Donna K.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: None, found by blood tests
Treatment: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T, selinexor-carfilzomib

Connie H.



Diagnosis: Multiple myeloma, relapsed refractory
1st Symptoms: Chronic bone pain
Treatment: IV Chemotherapy, CAR T cell therapy

Elise D.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone

Beth A.



Diagnosis: Multiple myeloma, relapsed/refractory
Subtype: Non-secretory (1-5% of myelomas)
1st Symptoms: Extreme pain between shoulder blades, sternum, head, burning sensation
1st Line Treatment: VAD chemo, radiation, stem cell transplant
RR Treatment: 8 chemo regimens, successful combo→selinexor+bortezomib+dexamethasone
Scott

Scott C.



Diagnosis: Multiple myeloma, relapsed/refractorySubtype: IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatment:
Clinical trial, chemo, kyphoplasty, stem cell transplant

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