Candy’s Mantle Cell Lymphoma Story: Stage 4 MCL, Non-Hodgkin’s Lymphoma
Candy shares her stage 4 mantle cell lymphoma (MCL) story, a subtype of non-Hodgkin’s lymphoma. She details undergoing extensive treatment: six months of chemotherapy, an autologous stem cell transplant, and two years of maintenance chemotherapy.
In her story, Candy also highlights how she navigated life after a cancer diagnosis, specifically managing through hair loss, how she advocated for herself as a patient, and a message she heard that helped her through the toughest times.
- Name: Candy W.
- Diagnosis (DX)
- Mantle cell lymphoma (MCL)
- Subtype of non-Hodgkin’s lymphoma
- Age at DX: 46
- 1st Symptoms
- Lump on back of head
- Extreme fatigue
- Acute weight loss
My only real insight that came to me during my cancer treatment came at that time. Real insight, in that I believe it was a message that was delivered to me, rather than something I came up with myself.
‘Your only job is to walk with love through this world.’Candy W.
- Path to Diagnosis
- What were your first symptoms
- Describe your trip to the ER
- Describe the ultrasound
- The first time you heard “cancer”
- Describe the MRI you underwent for diagnosis
- How was the lymph node biopsy
- How long did you have to wait for biopsy results
- How did you deal with scanxiety
- Mantle Cell Lymphoma Diagnosis
- How did you learn of the diagnosis
- Symptoms worsened before treatment
- How did you process the news of cancer
- Guidance on how to break the news to loved ones
- How did you decide where to get treatment
- How was your medical team
- Chemotherapy and Side Effects
- Describe the chemo regimen you underwent
- Bad reaction led to slight change
- Did you get a port or a PICC line
- Chemo felt effective pretty quickly
- What were the chemo side effects
- What were the best ways of preventing other side effects
- Stem Cell Transplant (Autologous)
- What tests did you undergo before the transplant
- Describe all the preparations you made at home
- Describe the prep before the transplant
- You had to sign paperwork before the transplant
- Describe what you remember day of the transplant
- Describe the in-hospital experience after the start of chemo
- How long were you in the hospital
- Describe the recovery process at home
- Maintenance Chemo (Rituxan)
- Describe the Rituxan maintenance chemotherapy regimen
- What were the side effects?
- What helped prevent/reduce the side effects
- What has been your follow-up protocol
- Describe the hair loss
- What helped with the hair loss
- Were there moments you had to advocate for yourself
- Were there any big surprises during treatment
- What was the lowest point during treatment
- What helped you most in dealing with this kind of stress
- How important is it to have caregivers
- Were you able to ask people for support
- Could you work through treatment
- Describe the transition to a “new normal”
- Learning to get comfortable with your own cancer story
- Your perspective on statistics and numbers
- Thoughts on “being positive”
- The promise of new treatments has been uplifting
- Last message to other patients and caregivers
Path to Diagnosis
What were your first symptoms
I had a lump on the back of my head on the left side toward the base of my skull. It didn’t hurt but I did wonder about it.
I had just gotten married in Vancouver. The following day, we flew to South America for a vacation. I was a full time teacher and we have four children, so the exhaustion I was feeling didn’t seem unusual.
There are always certain points in the school year, including time with my own kids at home, that just feel exhausting, so I wasn’t particularly alarmed about feeling tired.
I was dropping weight without dieting and I’m thin to begin with, but again, I wasn’t alarmed about it. I lost about 10 pounds over a few months.
While we were in Venezuela in the first few weeks of August, I had scheduled a breast implant surgery. After breast feeding four kids, I was a good candidate for the operation. The private clinic in Porla Mar was reputable and the price was a fraction of what the operation would cost in Canada.
Prior to the surgery, I had a chest X-ray, blood work, and a physical exam from a doctor to assess my fitness for the breast surgery and they didn’t detect anything unusual, even though I had this small lump on the back of my head.
The surgery went well and I recovered quickly. When we got back home, school started, and after about two weeks of school, I felt nauseous during the night. I also had a bit of tension and tightness in my right side sort of under my rib cage. I thought it might be a gallbladder problem.
Describe your trip to the ER
I went to the ER to see if they could give me an ultrasound. The ER doctor said she didn’t think there was anything wrong.
She kind of indicated to me that this isn’t an emergency and I should’ve seen my family doctor, but she sent me to the ultrasound department, which got me in very quickly. I waited about 20 minutes.
Describe the ultrasound
The ultrasound was performed on my abdomen and she was really taking her time. She left me in the room briefly to consult with a doctor, then came back and finished up the ultrasound.
I saw the doctor again who said that the ultrasound technician spotted enlarged lymph nodes in my abdomen. Turns out my gallbladder was fine but that there were these worrisome, enlarged lymph nodes across my abdomen.
I was sent immediately for a CT scan and an X-ray. I met with the doctor, along with my husband, who said that I was going to have to get an MRI because they suspected lymphoma.
The first time you heard “cancer”
The way the doctor told me that was odd because she said, ‘Well, we don’t like to use the C word, but…’
She also told me that I would need to have a surgeon take out a lymph node for biopsy.
The CT scan also showed that there was something unusual on my liver and on my kidney. There were enlarged, so presumably cancerous, lymph nodes resting by the liver. The concern was that it had spread to the organs.
Describe the MRI you underwent for diagnosis
The MRI was scheduled for the following week. I took a few ativan before hand because my general practitioner (GP) thought it might be a good idea.
I have a needle aversion, not that anyone particularly likes them, so I didn’t want to faint when they inserted the IV for the dye necessary for the MRI.
That also means that I don’t remember all of that experience perfectly, which is fine with me. I do remember that the technician for the MRI gave me headphones and put on a radio station. There was old 70’s disco playing and I wasn’t even allowed to tap my toes. Difficult.
I don’t remember feeling particularly stressed although the week before that was stressful. Just in the week that led up to the MRI from the initial ultrasound, the lump on the back of my head had grown substantially.
It was now about the size of a Canadian loonie. I also had another X-ray, which I don’t really remember.
How was the lymph node biopsy
The following day I had a lymph node removed from the left side of my groin. I went in to see my GP in the days before the MRI and she could feel a little lymph node on my groin.
She said it would be a good one to remove because they are very close to the surface, and therefore easy to remove from that area. The biopsy was painless and they were super nice.
The nurse said to me that even if it did turn out that I had cancer, I would be one of the ones that make it. Not sure how she knew that but she said it.
And I never forgot it.
For the biopsy the surgeon removed the lymph node from the left side of my groin. I was given a local anesthetic and I didn’t feel much. There was a very small incision.
How long did you have to wait for biopsy results
My GP was like a dog with a bone! The biopsy was rushed. The next day, I got a phone call from my GP saying that the diagnosis was lymphoma.
The following day, she called me back to tell me it was the subtype of mantle cell lymphoma or MCL.
She explained to me that the lymphoma was considered intermediate to highly aggressive, and that I was being referred to see a lymphoma specialist.
How did you deal with scanxiety
I went to the doctor on September 13 and had a diagnosis by September 22, so the whole process only took nine days. The scans that followed, further on into my treatment were much more stressful because initially, I didn’t know what I was dealing with.
The last CT scan I had was the most stressful. It was the one after three years of treatment and it would show whether the treatment was successful.
I waited for a week for the results. I was very grumpy that whole week. I was irritable and I withdrew to my room.
Mantle Cell Lymphoma Diagnosis
How did you learn of the diagnosis
The diagnosis was stage 4 mantle cell lymphoma. I was in the car and my husband was driving. We were heading out for lunch. The name of the pub was called “The Terminal” (laughs).
We started laughing and joking about cancer very early on. It helped.
At that point though, I didn’t understand the relevance of the different types of lymphomas and the vastly different life expectancy for each one.
We were waiting to hear back about the MRI results to see what exactly was going on with my liver. Turns out the thing they saw on my liver was a series of damaged blood vessels, hemangioma, and it wasn’t lymphoma spread to the liver. The kidney was fine, too.
The diagnosis was still stage 4 because the affected lymph nodes were spread above and below my diaphragm. They found tumors in my pelvis, groin, abdomen, chest, neck, head. Pretty much everywhere you have lymph nodes.
Symptoms worsened before treatment
During the short period of time in between diagnosis and the start of chemotherapy, I could tell the cancer was spreading quickly. Not only was the lymph node on my head growing, but I was feeling sharp stabbing pain in the center of my chest.
It turns out that it’s quite common that when cancer is in the bone marrow, patients feel it first in their breast bone where the bones are thin.
I also started getting diarrhea. I started getting diarrhea one day and it didn’t change until after the first chemotherapy. That was the cancer, spread to my GI tract.
The cancer was progressing so quickly that I could feel my life energy fading just in those few weeks.
A friend came to visit me and I had to ask her to come and sit closer to me because I was feeling like I couldn’t speak loudly enough for her to hear me across the room. How was I teaching a class of Grade 6 students just weeks before and now I was so weak that I couldn’t speak loudly?
How did you process the news of cancer
I called my sister who is a nurse and I called my brother who works in hospital administration. They both did some reading about mantle cell lymphoma.
I did, too, but I was interested to hear what they learned about it. They said there was a poor prognosis for mantle cell lymphoma, so it was quite shocking to hear the short life expectancy.
Guidance on how to break the news to loved ones
I think you need to first think about how individual family members have reacted to crises, deaths, bad news, illness, and accidents in the past.
If there are family members who seem to lose their shit when something bad happens, take them off the group chat.
Start with a very small circle of people who you know for sure are not going to make it about them. If there are family members who are very reactive or who are trauma victims, something shocking, or the threat of loss can trigger some unusual behaviours, and you may end up feeling attacked.
I think there very well may be a phenomenon where family members of terminally ill patients go on the attack, sever ties, criticize, and become divisive.
Don’t expect more out of those people than they have proven to be able to handle in the past. It will be a good predictor of the future behavior in stressful family scenarios, especially if they really love you and are scared.
How did you decide where to get treatment
I was referred to the BC Cancer Agency and that is the only place to get treatment. Canada’s universal health care is world class and I have never second guessed that I was getting the best care available.
I have never been so thankful to be Canadian and I can only guess as to the amount of public money that was used to save my life. I’m forever grateful.
How was your medical team
The doctor I was given at the BC Cancer Agency was a specialist in mantle cell lymphoma and had written dozens of journal articles. He was a nice guy and very confident.
I was really sensitive and scared though, so at one point I was upset that he didn’t square his body to me when he was feeling the lymph node on the back of my head.
In the several weeks in between diagnosis and starting treatment, that lump was growing exponentially and it was so big at this point that it was changing the shape of my head.
He just casually felt it and I didn’t feel that he took his time and then his nurse explained that he could accurately measure, within millimeters, the size of a lymph node just with his finger tips.
I remember being upset about that. I think I felt very alarmed, and his response was, “That will just melt away during chemo.”
I continued to see my GP to talk about anything that came up and she was really helpful and available. The oncologist explained to me that lymph nodes are on the outside of the skull. I felt a little stupid for not knowing that.
Chemotherapy and Side Effects
Describe the chemo regimen you underwent
I started chemo, over two days each cycle, in November. It was bendamustine and rituximab.
One day was about a four-hour infusion for the bendamustine through an IV.
The second day was a shot in the abdomen of rituximab. Then I went back for the same treatment over two days in December and in January.
There was one month in between treatments for six months as “conditioning treatment” for the transplant.
Bad reaction led to slight change
There was a bad reaction to the rituximab shot, so it was changed to go in with the IV. The subsequent chemo appointments were done on one day. The infusion still took about four or five hours.
Did you get a port or a PICC line
I got a port for the transplant but for the chemotherapy I was getting an IV. I fainted the first time I got the rituximab shot. It’s a huge needle and they give it to you in the abdomen.
First, they have to pinch some fat to inject into and I was too thin. The needle was bumping up against my muscle wall. It was painful and then I started to feel woozy, nauseated, and very overheated.
It’s just garden variety fainting. It’s not medically all that relevant but it’s very unpleasant and it’s disruptive to the treatment. I was taking a few ativan beforehand to help.
I got Emla cream to try to numb the area before the IV but then a nurse told me I shouldn’t be doing that as it actually constricts the veins. My veins in my hands took a beating and several times my veins ruptured.
After several fainting spells during the rituximab injections, they decided to stop the injection and put it through the IV with the bendamustine. It just meant a longer day there but that’s better than the needle.
Chemo felt effective pretty quickly
Within 24 hours of getting my first chemotherapy of Bendamustine and Rituximab the tumor on the back of my head completely disappeared.
It melted it away the very first time. Your initial response to chemotherapy is a predictor of how well you do in the long run from what I understand.
What were the chemo side effects
Summary: Bruises from burst veins (IV), nausea, vomiting, weight loss, mouth sores
The rituximab needle created a big red welt on my abdomen at the injection site. It was damaged tissue, hot and inflamed. The damaged area would travel across my abdomen. It was very red and hot, and it wasn’t a side effect that was listed as even an uncommon side effect.
The burst veins in my hands and the bruises were hard. I would wear wrist bands so I didn’t bump them into anything.
I felt a little nauseated from the first two treatments in November and December. The January treatment hit me hard.
I was down to 106 pounds, I was up throwing up all night, and was so exhausted from heaving that I fell asleep without rinsing out my mouth.
I developed a bad mouth sore. That month, I made the mistake of not taking the ondansetron, anti-nausea medication, preventatively.
I waited and nausea came. Then I tried to treat it and it wasn’t successful. I never made that mistake again.
Never ever wait on the anti-nausea meds till symptoms arise.
What were the best ways of preventing other side effects
I was taking high-dose Phoenix Tears cannabis treatments for three months and it helped with nausea significantly. I also smoked high THC concentrate cannabis products in a vape pen. It helped me with my appetite and with general well being.
While in the hospital, they prescribed me synthetic cannabis instead. Ondansetron was very helpful but also causes constipation.
Stem Cell Transplant (Autologous)
What tests did you undergo before the transplant
CT scan, chest X-ray, pulmonary function, dental, angiogram. All my tests went well. I had above average lung function, and no other health issues aside from blood cancer.
Describe all the preparations you made at home
There were some things we did to prepare for when I came home. We had a few windows replaced that had mold on them, we had professional cleaners, carpets cleaned, bought air purifiers, got rid of pets and houseplants, bought a water purifier, got the furnace cleaned so the air was cleaner.
I did anything I could think of to try to prepare. I made a bunch of meals that I froze, but it turns out I wouldn’t eat any of the things I made.
I arranged with my sister to take my three kids for the summer. She lives in a different province, but they wouldn’t have been allowed to visit me anyway and we wanted them to just have fun with Auntie.
Describe the prep before the transplant
There was a whole series of tests leading up to the autologous stem cell transplant. There was also a good deal of communication with the transplant program at Vancouver General Hospital.
They assigned me a transplant “navigator” who served as a point person for a lot of our questions, and for them to give us instructions and information going into the transplant.
I got a Trifusion line placed into my right internal jugular vein. It was disgusting and I never think about it. A few days later, I started going into the hospital to get a series of G-CSF shots to stimulate the stem cells to move into my bloodstream so they could get removed by the apheresis machine.
I got about four shots but it was determined that it was not working and that it was not successfully mobilizing my stem cells.
It was explained to me that roughly half of MCL patients don’t respond to the shots because the typical treatment is bendamustine and there is something about the bendamustine that renders the G-CSF shots less effective.
This was not good news, but there was another shot that I could take that wasn’t approved for use in Canada but that we could still get from the U.S. It worked.
You had to sign paperwork before the transplant
I was admitted to the transplant unit on the top floor of the hospital. There was a social worker who met with us before we were admitted.
In that meeting she went over the fact that there was a five-percent chance that I would die during the transplant and asked if I wanted a “do not resuscitate” (DNR) order.
She also asked if I wanted a priest of any particular denomination in case of that event. I was offended. Normally, I wouldn’t freak out about something like that.
Describe what you remember day of the transplant
I went into the apheresis unit. They hooked me up to my port and the machine is not what I expected. The whole experience in the apheresis unit was not what I expected.
It is a big open unit with no privacy, people are hooked up for hours, and they use commodes while there. The machines were bigger than I expected and made more noise than I thought they would.
I thought it was a silent process. It was actually a huge, whirring machine that tugs at the port and you can feel it. Not pleasant. I was terrified.
Describe the in-hospital experience after the start of chemo
I had a private room with my own bathroom and wall-to-wall windows, even in the bathroom, overlooking Vancouver and the mountains.
Once the chemo started in the hospital, I started feeling pretty bad pretty quickly. Nausea, diarrhea, but thankfully, no mouth sores.
I have never felt so sick in my life. It was a minute-by-minute operation for me to make it.
The rules in the hospital were very, very restrictive. Only one visitor at a time, dressed in full gown, masks, gloves, the room was wiped down constantly, and at one point, I had a nurse at my bedside all the time. That was only for a day.
Other than that, they came in every two hours. It was very difficult to sleep, but of course, I was very well-monitored. There was one point where I wasn’t allowed to get up and get out of bed on my own because I had collapsed. They have alarms on the beds and they are not afraid to use them.
How long were you in the hospital
When I was first admitted, one nurse said I would be there for six to eight weeks. I was released in 3 weeks! I had a very, very good response.
Describe the recovery process at home
When I got home, I started getting better much more quickly. I was able to sleep, I was much more comfortable and happy.
I rested a lot. I ate what I could and I was trying to be easy on myself.
Maintenance Chemo (Rituxan)
Describe the Rituxan maintenance chemotherapy regimen
I was given a few months to recover. I had a CT scan that showed my lymph nodes were a normal size and my blood work looked okay.
Maintenance chemotherapy lasted for two years.
My neutrophils were still pretty low and at one point got down to 0.3, which was a little alarming. I must’ve been fighting off a virus or something like that.
What were the side effects?
The maintenance chemo didn’t produce any bad side effects. It was every three months for two years. Each time I did just fine.
Normally, the rituximab would be given by shot to the abdomen, but because of the side effects from previous shots I had the treatment given by IV. It took three hours or so.
Even though the rituximab didn’t produce any horrible side effects, the insertion of the IV always gave me anxiety. My husband and I figured out early on in my treatment that if I looked at him and we breathed slowly together, the insertion of the IV feels more manageable.
I felt a little off and somewhat queasy from the treatments which lasted for a few days, but then I had three months until the next treatment. In between, I tried to do my gardening, housework and little projects.
My weight was still pretty low during these treatments and I was trying hard to stay healthy and to keep my appetite up. I found that if I allowed myself to stop eating for any period of time, it was harder to get it going again.
What helped prevent/reduce the side effects
Prioritizing rest really helped me during this period. I made sure that I rested before I got tired to manage fatigue.
What has been your follow-up protocol
I went for a CT scan September 10, 2020 and it showed complete remission. The doctor talked to me about what that means and what to expect as far as recurrence.
He also spoke to me about the prognosis of relapsed mantle cell lymphoma. MCL is an incurable cancer and the oncologist suggested that I’d likely remain in remission for 18 months. The prognosis for relapsed MCL is 16 months survival time.
Describe the hair loss
I didn’t have hair loss until the transplant so I waited till about a month before the transplant and I got a shorter haircut to get used to it. Then in hospital I got my head shaved so that it wasn’t falling out.
I was prepared. I bought wigs and some cute head scarves. I knew it wouldn’t be a significant issue for me. My reaction was pretty much what I expected.
What helped with the hair loss
I didn’t like the wigs because they seemed unnecessary and itchy.
I liked the caps that had some volume to them so that my head didn’t look so small, because I felt that made me stick out. I also had my eyebrows microbladed.
Were there moments you had to advocate for yourself
I showed up for my first chemo with a little binder I put together for myself. It had a cute picture and all my chemo information. I was trying to be informed, prepared, accepting, organized.
A nurse then told me I was “a type.” I didn’t advocate for myself but I should have. I didn’t have other situations where I felt I had to advocate for myself.
I was never offered any option as to the course of treatment. The treatment plan was laid out for me as the one that would give me the most years of remission.
Were there any big surprises during treatment
I was surprised at how easy it was with regard to paperwork. Everything from my extended health insurance, my employer, everything was seamless.
What was the lowest point during treatment
There was one night in the hospital during my transplant stay where I collapsed on the way to the bathroom with my husband holding me on one side and a nurse on the other. I was unresponsive, on the floor of the hospital, crashing.
My husband was traumatized, there was a room full of medical people rushing around. The psychiatrist came in at midnight to talk to me to see if I remembered anything.
She was doing research and writing on near death experiences. I had nothing to tell her. I really remembered nothing. Just like a light switch. Medically, that may have been the worst I was.
But there was a point right before treatment started when I could feel the cancer growing. That was perhaps scarier.
What helped you most in dealing with this kind of stress
I kind of went through a dark night of the soul sort of thing. I’m not scared anymore. I am able to have frank conversations about death now, while still remaining positive. That’s a very nuanced discussion.
At my very lowest point I was in my hospital bed feeling very very ill, and feeling as though minute by minute I had to struggle. My only real insight that came to me during my cancer treatment came at that time.
Real insight, in that I believe it was a message that was delivered to me, rather than something I came up with myself.
‘Your only job is to walk with love through this world.’
How important is it to have caregivers
The people who love you are going to show up for you. But, it’s important for me to remember that if I am constantly looking for other people to “get it right,” to make me feel better, to have the appropriate responses, I will be disappointed a lot.
There are some people I thought at the beginning would be a big support for me and they weren’t. There were some people whom I wasn’t all that close with initially who became really good supports.
Were you able to ask people for support
Going through crisis only amplifies and sheds light on the deficits in your relationships. Similarly, it amplifies the strengths. It just makes everything more of everything. More good, and more bad.
Could you work through treatment
I stopped work before I had a diagnosis. During the diagnosis phase I got substitute teachers. I never went back to my classroom except to pack my things.
I am very grateful to have had the support of my teachers’ union and I have felt protected financially.
Describe the transition to a “new normal”
I got good advice and a big written package from the transplant navigator about fatigue. I try to manage my fatigue by resting before I get tired. I really try to preserve my energy.
I am generally in a pretty good mood, but I have headaches, bone pain, fatigue, night sweats, back of the eye bleeds. I also feel like I have experienced some elements of post traumatic stress.
I had to get a mammogram as part of my regular cancer screenings. Once I was positioned in the machine, I started to feel very ill and the technician had me lie down.
It was the same feeling as when I was fainting during chemotherapy. I got very hot and started sweating profusely, felt nauseated, tunnel vision, and swooning. I felt better in a minute or two, so we tried again with the mammogram, but the same thing happened.
I think the large whirring machine may have triggered the episode. I had a similar experience when I went to the ophthalmologist. The machine being used for testing my eyes was smaller and silent but just being in a medical setting and having any type of medical intervention seems to cause these episodes.
I didn’t take an Ativan prior to either of those tests, which I should have. My general practitioner doesn’t like to prescribe too many as they are habit forming, so I make sure I only take them when necessary.
My understanding is that they lose their effectiveness if they’re used often, for example to help with sleep. So I didn’t take them on a regular basis so they would be more effective when I really needed them, like during medical tests.
Learning to get comfortable with your own cancer story
I haven’t yet developed an ease with telling my story and what has gone on with me medically for the past few years.
Last summer, my husband and I and the kids bought an RV and drove across a few provinces staying in campsites. It was a great way to have some fun with the family during COVID-19.
At one of our overnight stops, my husband’s friend and his wife dropped by the campsite for a socially-distanced visit. I was having an interesting chat with the woman who was telling me about her career in a male-dominated industry, so I was asking her lots of questions about her job.
After a while, she asked me, “So, what do you do?” I just answered, “Nothing.” And then there was silence. We went on to talk about something else, but it illustrated to me that I really don’t know how to talk about my story very fluidly. I could’ve said I am a teacher but I’m on medical leave, or I could’ve said I’m retired, or any number of things.
The telling of the story is the part of the process I’m in now. I hope that in telling my story, I can gain insight. Maybe the story isn’t just about the trauma and the fear that I experienced.
Your perspective on statistics and numbers
When we are given cold stats, we are asked to contemplate our risks based on that. How can we make appropriate decisions and wrap our minds around statistics if we don’t approach it honestly with ourselves?
When the doctor gives us certain statistics, whether it’s about risk of death for a procedure or whether it’s the number of years of survivorship that are generally ascribed to certain cancers, it can be hard to absorb.
Being “positive” doesn’t necessarily mean rejecting those statistics. Accepting the realities of a diagnosis doesn’t give the cancer permission to grow, and it doesn’t mean admitting defeat.
I felt that if my doctors and I were going to rely on these statistics I was being given as a guide for my treatment, why would I then reject those very statistics and what they mean for my longevity, just because I don’t like the look of them?
It didn’t seem logical to accept statistics when it is something that serves me in guiding treatment decisions, but then reject them when it doesn’t fit with what I want, like living a long, long time.
So, I remain hopeful that I will outlive the statistics.
However, I never felt that rejecting the possibility that I would do as well as most and fall into the middle of the pack somewhere as far as survival time would be helpful to me. It doesn’t feel like admitting defeat to me.
I don’t feel like my happiness rests entirely on what is going on with my blood. Of course when I relapse, I will experience upset and I will have more adjustments to make, but I’m positive that I will be able to handle it.
Thoughts on “being positive”
Being positive can be a real roller coaster ride. When you first hear that something unusual showed up on a test, you focus on, “I’m sure it’s not anything serious,” only to find out it’s cancer.
Then you focus on, “I’m sure it’s not a bad type”, only to find out it’s incurable. By the time I got to the part of the process where the stem cell mobilization shots were failing, I had adjusted my thoughts.
Rather than focusing on being positive that the tests would be favorable or that treatments would be deemed successful, I kept on focusing on my ability to handle it even if things didn’t go my way.
I wasn’t praying for the tests to go my way, I was praying for the strength to handle it no matter what the news was. It’s a small shift in consciousness but it made a big difference to me.
I felt much more grounded knowing that my peace of mind wasn’t being tossed around with my fluctuating neutrophil numbers. The space in between what was happening in reality and what I wanted was causing me distress.
The promise of new treatments has been uplifting
Initially, the doctor who did the autologous stem cell transplant told me that when the MCL relapses, the course of action would be to have an allogenic transplant.
After the last maintenance chemotherapy, the oncologist said that upon relapse the treatment plan would not likely include another transplant, which was such a huge relief to me.
He said that the treatment would include an oral chemo which could be taken at home. I think the recent approval of ibutinib as a treatment for relapsed MCL has changed the prescribed course of treatment. I was very relieved to hear this because I didn’t like the thought of going back for an even more risky transplant.
Last message to other patients and caregivers
If you were an over-functioner before, you will approach this as an over-functioner. Be reasonable about how much information you can absorb and understand without a medical degree. Be wary of the web (internet).
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Mantle Cell Lymphoma (MCL) Stories
Tim H., Mantle Cell Lymphoma (MCL), Stage 3/2
1st Symptoms: Lump on left-side of neck that grew bigger over a couple years, new lump on right side
Treatment: 6 cycles Nordic chemo protocol, alternating cycles of R-CHOP and rituximab + high-dose cytarabine, autologous stem cell transplant
Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms: (Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment: 6 cycles Hyper-CVAD chemotherapy
Candy W., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms: Bump in back of head, extreme fatigue, acute weight loss
Treatment: 6 cycles bendamustine & rituximab (Rituxan), BEAM chemo before autologous stem cell transplant, 2 years maintenance chemo (Rituxan)