Multiple Myeloma Relapse | The Patient Story

Multiple Myeloma Relapse

Beth’s Story (Pt. 3)

Beth A. describes how she’s navigated treatment, side effects, and life in general after getting diagnosed with multiple myeloma almost 25 years ago.

In this segment, Beth shares the first symptoms that led her to believe something was wrong and how she had to continue to speak up about her pain in order to finally get diagnosed with her first multiple myeloma relapse.

She also dives into radiation therapy, chemotherapy, and the different side effects from her second line treatment, and how she pushed forward mentally and emotionally.

  • Relapse:
    • Age: 45 years old
    • Symptoms:
      • Extreme pain in ribs and head
      • Light chain #s up
    • Treatment:
      • Radiation (193 sessions total over seven years)
      • Chemotherapy (9 regimens since beginning), mainly:
        • Velcade [bortezomib], Cytoxan [cyclophosphamide] and Decadron [dexamethasone]
      • Different drug combinations
        • Elotuzumab (Empliciti)
        • Belantamab mafodotin (BLENREP)
        • Selinexor (XPOVIO)+ bortezomib (Velcade) + dexamethasone

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.

1st Symptoms of Relapse

What were the symptoms you experienced for the relapse?

It was really strange because it came on suddenly. Now that you look back on it and you think, well, maybe there was pain there and I just ignored it. It just really came on suddenly. 

We were out of town, and I was sitting on some steps and I sneezed or coughed, or something, I think it was a sneeze, and it just popped in there. I just had so much pain.

That’s when we went to an emergency room. I couldn’t breathe, I couldn’t sit, I couldn’t lay without being in excruciating pain.

Of course, then I start thinking “myeloma.” We really hadn’t seen it for 12 years. They couldn’t see anything on the X-rays at the emergency room.

The oncologist didn’t see anything

I went back to the oncologist. He didn’t see anything. The light chains test was pretty new back then. He didn’t have a history of my light chains, so it was difficult for him to say, “Oh, well, there’s a trend. It’s going up. It’s going up. It’s going up.” 

I felt like we needed to do something because those light chains were going up. He just felt really confident that there was nothing going on.

Mentally, it was just really hard because I was like, I think there’s something going on. I just put it to the back of my mind.

The Relapse Diagnosis

How did the relapse get diagnosed?

We moved all over Wyoming, but when we moved to Casper, we saw the doctor here. He found a big plasmacytoma on those ribs. I’d been telling him about other pains. I was having pain in my skull at that time, and in my femur and my hips. 

He did some scans, and he’s like, “Well, are you having pain in your ribs on the right side?”  I was like, “Yes, for about two years at this point.”

I said, “I just don’t tell anybody about it anymore because I thought it was nothing.” He’s like, “Well, you have a large plasmacytoma on those ribs, and it’s obviously been growing for a long time.”

Another example of importance of speaking up

I don’t know what happened with those scans and why you couldn’t see [the plasmacytoma] in those. It was just very strange.

Once again, it was one of those things where I wanted to fight for myself and say, “Hey, you need to listen to me. I am having these issues and no one’s listening to me. You’re just blowing it off.”

I’ve had that experience so many times, and I’ve learned over 23 years now how to say, ‘Wait a minute. I know something is going on. We need to keep investigating this until we figure it out.’

For me, I’m not a pusher backer. I want to trust my doctor, I want to do what he says, I want to follow all of his recommendations. I’m not one to push back. It takes me a long time. It’s really hard. I cry, and I get really emotional about it. 

How have you learned how to speak up with your doctor?

I’ve just learned how to have a conversation with the doctor. It’s taken a long time to be able to do this in a way where I’m just saying, “Hey, there’s something wrong here and I need you to help me with it. Is there anything else we can do?”

My doctor and I have really come to that place where we’re able to have those conversations really easily.

It is hard because you want to trust them, and you want to put your faith in what they have to say. At the same time, you have to advocate for yourself.

2nd Line Treatment

Describe the radiation therapy

Beth had 193 radiation sessions starting from her first line treatment, mostly focused on the sternum area.

Fortunately, with multiple myeloma, they can use low dosages. It’s really, really effective. Every time I’ve had those 193 treatments have all been effective for me. It immediately started reducing the pain from the lesions. 

I’ve had several tumors. I’ve had a tumor behind my eye, I’ve had tumors in my ribs, and on my sternum, different places in my skull. They just reduce them quickly. I only have to have 12 treatments, and then that’s all they would do.

What were the radiation side effects?
  • tiredness, fatigue
  • redness
  • some hair loss

Thank goodness, the side effects were very minimal. There’s definitely tiredness and fatigue, even redness. I didn’t even have burns or anything.

I lost some hair when I had to have some done up here, then part of an eyebrow. That causes hair loss a little bit. 

Mostly, I didn’t have nausea. I didn’t have anything like that. I think I’m really fortunate because of my age, and being young and going through all of that. I’m still young for being treated for multiple myeloma.

I think that’s an advantage for me in that my body handles it pretty well. It’s getting harder and harder. I think as it builds up in your system, and you have so many [tumors], but even this last one that I had a year ago, it was on my ankle, and I didn’t have any real side effects except for maybe a little bit of fatigue. 

Then, that’s very different for myeloma patients. I’m in the oncology center with all different kinds of cancers.

Some people have a really hard time with radiation. They have to deal with the side effects that I didn’t have to deal with.

Describe the chemotherapy, side effects & what helped you lessen them

Beth says she underwent 9 different chemotherapy regimens starting with first line treatment.

Bortezomib (Velcade) + Cytoxan + Dexamethasone
  • fatigue (biggest)
  • some nausea

I think that there’s some nausea that happens with it, definitely fatigue. I think, for me, that the biggest side effect of all of the chemotherapies that I’ve done is fatigue. Also, some nausea, but they’re so good now with medications, where they have a three-medication regimen. 

You start with one, and if that doesn’t help, you go to two, and then if that doesn’t help, you go to three. Usually, by the second one, I’m feeling pretty good. I’m feeling a lot better. That has been really helpful for me as those three medications for nausea.

They also will give you something to help with that. If you’re doing an IV treatment that day of chemotherapy, they’ll start with something that will help with nausea.

Dexamethasone (steroids)
  • blood clots, even a pulmonary embolism
  • pulmonary hypertension (fluid in lungs)
  • insomnia, difficulty sleeping
  • weight gain
  • anxiety
  • mood swings
  • cataracts
  • shortness of breath

I’ve had some other side effects, like with the dexamethasone. I’ve been on that so long. It’s a steroid, and so it caused the blood clots. I had a pulmonary embolism, actually two clots in my lung from being on that long-term, and they thought it was in my ankle, and they did an ultrasound, they couldn’t find it, and then three days later, it was in my lungs. That was definitely a scary side effect of the dexamethasone.

The dexamethasone is a hard medication. It causes me to not be able to sleep, so I still do it twice a week. I take it orally, and it causes me not to be able to sleep. It causes me to gain weight. It causes me to have what they call “moon face.”

It causes anxiety. For a while, when I went back on it at high doses, I was on it, every time I’ve done treatment, I’d been dexamethasone, and it’s been at different dosages. Because of some of the things that I’ve been through, they went back up to a higher dose. It’s like the maximum dose that they’ll give someone in a week.

Anyway, when we started this, I was so angry all the time, and anything my husband said, I would just lose my mind, and that’s just not me. That’s just not my personality. I would just get angry, and I would yell, and I would be so mad.

Then, we adjusted it for a little while, and then went back up on it, and now I’m doing a lot better. I’m able to see it coming a lot better so that I can take the steps of walking away from the situation or just closing my door for a minute and taking a breath.

The not sleeping part is really difficult, so two nights of the week, I don’t sleep much. The weight gain is really difficult as well. Every time I started, I gained anywhere from 10 to 30 pounds. That’s been really difficult. It’s really hard then to lose that weight. 

My radiation oncologist is always saying, ‘Don’t worry about it. You know, there’s nothing you can do. It’s chemically changing your body. Just do the best you can, eat as healthy as you can, try to stay away from sugars, those kinds of things, as much as you can. That’s all you can really do with that dexamethasone.’

But there’s a lot.

It also causes other things, like cataracts, and there are other drugs that I’ve been on that caused cataracts. Let’s see, just a lot of different things with dexamethasone.

I just was diagnosed about a year ago with pulmonary hypertension, and they’re pretty sure that that’s basically where I get a lot of fluid on my lungs. I struggle with shortness of breath and having to use oxygen and that kind of thing.

It put me in the hospital, they think, with pneumonia several times, and they think that some of the drugs that I’ve been on have caused that to happen. Just the long-term effects of some of these medications can be pretty harsh.

You just have to find ways of dealing with it. Right now, I’m on a lot of diuretics to help with the fluid in my lungs, and then on my body. That helps with the pulmonary hypertension. Anyway, there are so many things.

How did you manage the steroid side effects

We [lowered the dosage] temporarily. Then, when we went back up again, it was fine. I was able to deal with it. Right now, I’m handling it really well at the maximum dose. I just think I’ve just learned. Unfortunately, I had to take it for so long. I’ve learned how to deal with it.

Living Life with Myeloma

Being vigilant with myeloma “symptoms”

Talking about that [picture], with the tumor in my orbital bone, you can see in that picture is that my eye was starting to droop. My left eye, which is the one closest to my son, Zach, out there, was starting to droop down. 

It was starting to close and moved down my face, in a way. If you saw the MRI scans, you would see that there was a tumor on my orbital bone. It was pushing into my brain a little bit, and it was pushing my eyeball down my face.

In this picture, I had no idea that this was happening to me. I just kept looking at myself in the mirror going, “That eye looks really droopy.” I would ask people sometimes, like my husband, I’m like, “Does that eye look droopy?” He’s like, “Oh, I don’t know, maybe.” 

I just thought maybe it’s just something that was happening to me as I got older, I was not sure. Then, one day, I was at oncology, and I asked one of the nurses. I said, “Look at my face, and tell me if you think my eye is drooping.” One of the nurse is like, “Yes, I can totally see it.”

I went in and then saw our PA (physician assistant) there, and she’s like, “We need to go get an MRI right now.” That’s when they found that tumor there, but this is very typical of how my life goes.

I’m sure I had some bone pain there for a while. I have bone pain in my ribs, and I think to myself, “Is it old? Is it new? What is happening in these places? Is it nothing? Is it muscular? Is it bone pain?”

A lot of it, too, is because I don’t show the M protein. The only way that they really see the progression of my disease is through pain. It’s through the light chain test.

If my light chains just barely go up, people live in the hundreds in their light chains. If I go up to seven, I know I’m going to start getting lesions somewhere. 

That helps a little bit because then I can look at that and go, “Oh, if I’m at 10, then I know that this pain could be a lesion somewhere in my shoulder and my arm and my leg, whatever.” It’s just a constant everyday thing where I’m guessing about how I’m feeling, it’s hurting.

I went for a long time thinking my ankle was just twisted or hurt, and I was hobbling around and I was limping. Finally, my doctors are like, “We need to do something about this. We need to look and take a scan of it.”

Sure enough, there’s a tumor in my ankle. I had to end up wearing a boot for a while, and they did radiation on it. It’s just how my life goes all the time. It’s just those kinds of things.

What helps motivate you to keep pushing forward?

That’s probably one of my biggest struggles – how to live your life like that because I’m sick a lot. The last year has been really hard. When I go to oncology, they push me around in a wheelchair, or I was walking around my house with oxygen on because I wasn’t able to breathe, or hobbling around in a boot because my ankle had a tumor in it, all these things. How do I beat just that? It’s really hard.

I guess the biggest thing for me is if I’m going to go through this, I want to help others who have to go through it.

Doing things like this, or at the oncology center, we have a couple of myeloma patients there. There’s not a lot, but it doesn’t matter. There’s other people with cancer that I can talk with and let them share their story with me. 

Being “Beth with Myeloma” isn’t so bad all the time because I want to help other people and be a part of their journey and just be there to listen to them. I don’t know, it’s a really, really difficult thing to manage.

I just live with it. I guess I just live in it, being “Beth with Myeloma.” When I was working as a teacher, there at the end, it was just really hard because I was needing accommodations. I needed people to help me get my kids to other classes. I needed my oxygen in my classroom. I needed all these things. 

I just became “Beth with Cancer.” I guess it’s okay. I don’t mind it too much. If people want to talk about it, I’m always willing to talk about it and share my story and see if I can encourage anyone. That’s where I’m at after 23 years.

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