A Northwest Lens On Myeloma: Lessons From My Stem Cell Transplant
I received an autologous stem cell transplant in July 2016. I chronicled the day-to-day progress of my transplant in the Beacon’s forums, so I won’t repeat that account here. Instead, I’ll share some of my general thoughts and feelings about the process.
My stem cell transplant was performed outpatient, but because we live over an hour away from the clinic, we relocated to apartments reserved for transplant patients. While I didn’t like being away from home, this arrangement was a nice balance. It was better than being confined to a hospital room, but we were in a controlled environment conveniently located for my daily blood draws and consultations with the medical team.
Before the actual treatment, I completed three weeks of tests and meetings. The tests were to make sure I was ready to endure the transplant, and the meetings were to prepare me to do the things necessary to recover. This schedule was physically and mentally exhausting because of the number of appointments crammed into a short period.
Once I was cleared to move forward, I received Neupogen (filgrastim) injections twice a day for a week to mobilize stem cells so they could be harvested from my peripheral blood. As expected, the drug caused aches and bone pain, mostly in my hips. I took daily doses of Claritin (loratadine) to deal with the pain, but I only found true relief after the stem cells had been harvested from my body.
Eight days after my stem cell harvest, I started the actual stem cell transplant process. First, I received a high dose of the chemotherapy drug melphalan (Alkeran). The drug infusion was uneventful, but the preventative measures practiced were torturous.
One of the known, and significant, side effects of melphalan is that it can cause sores in the mouth and the rest of one’s digestive tract. These sores can be painful enough to prevent eating. To avoid this, I was instructed to hold ice chips in my mouth for six hours (the infusion took about four hours). By the end of the day, the accumulation of IV hydration and melted ice made me feel bloated and sick. I still don’t want to see an ice chip today. I didn’t, however, suffer a single mouth sour. So, as horrible as it was, I recommend the process to all transplant patients.
After taking a day’s break, my previously harvested stem cells were reintroduced to my body. Despite receiving several preventative medications, the preservatives the cells are stored in caused nausea and vomiting. Happy (second) birthday to me.
I consider myself very lucky in that my recovery from the transplant was relatively easy and uneventful. During the first 30 days, I slept a lot. Other than that, I experienced rather mild gastrointestinal issues, and I only received one transfusion of platelets. I was never hospitalized, I never ran a fever, and I never experienced any emergent problems. Going in, my “best case” expectation was for something like a two-week flu. It wasn’t even close to that bad.
I know my experience may not be the norm, and I don’t want to diminish the difficulty others endured. I can only share my story, and it simply wasn’t that difficult. I’ve said I was “lucky,” but I believe I learned some lessons that may help others avoid some of the negative effects of a transplant.
I had a great caregiver. I owe a huge debt to my wife. She is my caregiver and spends extraordinary energy keeping me healthy. Following the transplant, she continually and thoroughly cleaned and sanitized everything I could contact. Bathroom and bedroom linens were changed daily. Food was prepared and served with the utmost care. The information we received in the classes seemed somewhat overboard, but we followed the instructions carefully and I remained in good health. It could be coincidence, but I doubt it.
My medical team was proactive. Instead of reacting to conditions as they appeared, they acted to prevent those conditions from ever developing. I was given supplements and hydration not because my numbers reached alarming levels, but because the doctors know from experience it is easier to keep the numbers safe than it is to recover from them after they fall.
I listened to my body, but pushed as hard as I could. I rested – frequently. I also walked every day, even if I didn’t really feel like it. The most surprising thing to me after getting home was how weak I had become. I can’t imagine the condition I’d be in if I didn't stay active during the transplant.
I ate. When I didn’t feel like eating, I grazed through the day to make sure I got some nutrition. I drank when I really didn’t want to drink, but I carefully tracked my hydration and made sure I reached my daily goals.
I considered my recovery my summer job, and I worked hard to make sure I was successful.
I continued to follow the rules, even when I thought I was outside the window of risk. I was sent home on Day 28 after my transplant, and I couldn’t have been happier, but going to familiar surroundings created temptation to ease up on the cleaning and diet restrictions. I did my best to resist that temptation.
During the months leading up to my transplant, I felt scared of the procedure that loomed ominously on the horizon. Nearly six months post transplant, the details of the treatment are becoming vague memories, and the transplant is in the rearview mirror of what I hope is a very, very long journey.
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Mark's Photo For The Month
Before my wife and I started the hard work of the transplant, we were able to spend a couple days at our favorite lake to relax and prepare. I spent a quiet morning on the lake in my kayak and captured this photo.
Photo copyright © 2016 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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Thank you, Mark, for a really nice summary of your stem cell transplant experience. My husband had his one year prior to yours and there are some similarities in your experiences. I would like to highlight two of them. First, my husband also sucked on ice chips for hours and avoided getting any mouth sores. Second, he weathered the aftermath fairly well and only felt that he had a mild flu. What was different was that his procedure was done inpatient. As his caregiver, I really appreciated this and the precautions taken by the staff. Like you, he was able to head home around Day 28. He is now 18 months post transplant and doing well. I wish you the best as you move forward in your myeloma journey.
Thank you for sharing your experience Mark. I am a couple of weeks away from my first stem cell transplant and my husband will be caring for me at home (outpatient as we live 5 minutes from the hospital). I am going to have him read this to help him understand the importance of hygiene during the recovery period. All the best.
Well expressed, and a helpful reminder of the many details we now need to give much more attention to than before – fluid intake, nutrition, exercise, rest, and more. I was very glad to read that you had a fairly smooth time of it. It's good to hear the varied experiences. My post-transplant time was difficult, though I'd do it again, and for me it was fortunate that it was inpatient. I'm now three and a half years beyond those days. Your photos are terrific. Thanks very much to you and all the others for writing about your experiences.
Thanks for another good column and beautiful photo, Mark. I'm glad your stem cell transplant went so smoothly. I think some of it may have been due to luck. But a large part of things going well is due to the care you and your wife and your entire healthcare team took to do things right.
Here's hoping your stem cell transplant (and other treatments so far) keep you in remission for a long, long time.
Mike
Oh, how we love our caregivers!! They are magnificent, aren't they. So glad you are doing well and able to continue your photography, because it is stunning!
Thank you all for the nice comments.
Patty- I think there are pluses and minuses to both inpatient and outpatient. Certainly the inpatient route may be less work initially for the caregiver, but ultimately it still comes down to the caregiver (or the inpatient staff) keeping the patient healthy. I think sucking on ice is no guarantee of avoiding mouth sores, but everyone I've heard from agrees it is worth the effort and very often will reduce the risk of this side effect.
Belinda - I don't want to pile on the caregiver's duties, but I think there is no question keeping things clean is a big part of the patient staying healthy during recovery. Good luck with your transplant.
Cherry - Thank you for sharing. I tried to be clear that I don't consider my experience "typical" if you only follow the rules. I think I was really lucky. For instance, my doctors all said it was very common for patients to end up in the hospital at least once during the recovery process, and I was in a minority that avoided that. I still think it is best to do everything one can to try and make the experience as easy as possible, and the things I identified are the things in our control. A lot of what happens just isn't in our control.
Mike - As I just said to Cherry, "luck" and other things are not in our control, but listening to the doctors and doing what we can to minimize the risk of infection and bad side effects is worth the work. I have to think some of my success was based on my doctors, my caregiver, and my proactive efforts.
Susan - We owe our caregivers everything!
Mark - I am amazed at how different the experiences are for those who have undergone an autologous stem cell transplant. Like Mike, I can't help but think there is an element of luck involved. My experience was anything but flu-like symptoms. In fact, on about Day +8, I remember praying that if it was time for me to go, I was ready to go meet my Maker. The nausea and diarrhea was severe, to say the least, and my wife says that for the most part during those first 8-9 days, I did little more than sleep (and race to the bathroom on what seemed like an hourly basis!). And yet, as bad as those first 10 days were, on Day +16 I was discharged (mine was done inpatient) and I returned to work on a limited basis 8 days later.
Like others who have posted, my care through this part of my treatment was unreal. The "culture of care" exhibited by every person I came into contact with through this whole process was only surpassed by their technical skills and talents. Words can't express how fortunate I feel to have been under their care.
Steve - As i wrote, I won't minimize other's experiences with transplants, and I don't suggest they didn't follow all of the directions. Clearly this is a risky procedure with some really difficult side effects that every patient may experience.
One anecdotal tip my nurses insisted on was for me to sniff cut-up oranges while my stem cells were being introduced into my body. Apparently, the preservative the stem cells are stored in can cause nausea. While I enjoyed the smell of oranges, it did nothing to keep the contents of my stomach in their proper place.
Prior to my diagnosis, I haven't had much contact with doctors and clinics, so I don't have a body of work to compare. But the level of care and compassion I experience at my cancer clinic is unbelievable.
Great article Mark. Sounds like you've passed the ultimate test successfully, even though it doesn't sound appropriate in this context.
Ice lollies were part of the "treatment", so to speak, with Ian as well (my partner). He had to take them regardless – a bucketful too. They looked so yummy to start with. All colours and different tastes (5 different types), but soon we were sick of them!
One thing that strikes me odd is that I haven't heard of other people or caregivers commenting on the smell following the transplant. Soon after Ian's transplant, the room was filled with a powerful smell of sweetcorn. Some days when Ian was wanting a bit of fresh air in the room, I opened the window slightly and the breeze combined with the corn smell really transported you to another world. If we closed our eyes we could almost imagine ourselves in the middle of a sweetcorn field, which really helped. A change of imagery to make us forget even for a moment that we were locked inside a room for weeks counting the days till we can make an escape and run for it! The much desired freedom followed about 4 weeks after the transplant.
Thanks Joanna. The reason I didn't mention the smell is that I didn't smell it. I think this is true for most patients. In fact, until your comment, I totally forgot about it, but people in the room, and for a little time after, noted there was a distinct aroma associated with the chemicals the stem cells were packed in. It is my understanding that most patients don't smell this because it is going in their body (I don't understand the dynamics). My wife confirmed it was true in my case even a few days after.
Thanks for the great article Mark. I too had a stem cell transplant in May of 2015. Had worse symptoms that you – you were fairly lucky. I was nauseated for about 2 months, could not even drink water, had absolutely no food for over 15 days, lost 35 pounds in about 6 weeks, had the runs constantly all day (pooped in bed, in the car, everywhere – it was horrible). One year after transplant, the cardiologist said he did not think the multiple myeloma would come back. In September all was well. In January of 2017 it has returned, only a year and a half later. Just saw the oncologist on January 9th. So the plan of action right now is he will confer with the doctor who actually did the transplant. I will first start with the ugly 24-hour urine and then possibly my 4th bone marrow biopsy, so here I am again. Don't know if I can endure another stem cell transplant now that I know what I would be in for. So all I can do is pray they can find another means to hold me together.
I'm so sorry to hear your transplant was such an ordeal and that you're back facing this awful disease so soon. There are so many great treatments today you can only hope your doctors will find something that works well for you. I wish you all the best, and you know you have the support and good wishes of everyone in this great community.
Thanks for the article Mark.
I had my autologous stem cell transplant last October. I'm 47 and was diagnosed with myeloma in March. My experience was similar in some ways and more like Steve's in others.
I did suck on ice chips and popsicles for an hour prior to the melphalan, during the one-hour infusion, and for an hour afterward. I never got any mouth sores and was pleased as I was warned I would. I did rinse five times a day with Biotene, a dry mouth rinse. Once in the morning, after each meal, and once at bedtime, and I did that the entire time I was an inpatient, which was 18 days after the transplant.
The melphalan was rough for me. It gave me severe nausea but the Zofran (ondansetron) and Ativan (lorazepam) were helpful in combating that. I never vomited and was thankful for that, but the nausea and overall sick feeling was so severe I could really not eat much at all, and over the 20 days I was in the hospital I lost almost 20 pounds. (The same 20 I gained from the dexamethasone during the induction phase of chemo in my estimation). My diarrhea was pretty severe, and each time I had it they put me on non-contact isolation, which only meant visitors needed to gown up in addition to putting on a mask and gloves when seeing me. I also had severe fatigue during the first 10 days post-transplant. I would sleep until 11 a.m. or noon, take a 2-hour nap in the afternoon, and go to sleep at 10 p.m. at the latest. My body was clearly crying out for rest, and I obliged.
Overall, I would say I expected it to be worse than it was, so in some ways I was a bit surprised it wasn't as bad as I feared. My wife was so great as far as caregiving goes. She was sick for four days in the early going of my hospital stay, so she couldn't visit. I have three kids, ages 7, 5 and 3. The 7-year-old could have visited, but we made the decision to keep all of my little germ factories home while I was at the hospital. We were able to Facetime each day, so that was good.
I, too, was given a lot of education prior to transplant. It may have been a lot, but I would rather have more information than less with a major procedure like this. It really is pretty amazing medicine. One thing we were told is to do a super deep cleaning at our home, including scrubbing the walls and having the carpets cleaned for sure. When I told my transplant doctor we had dates set for bringing in a cleaning crew and carpet cleaners, he said to skip it. He said it would be good, but wasn't necessary. We went ahead with it. And on my second post-transplant appointment, I was wearing my mask, and he told me to ditch it as well as forgetting any food restrictions. He told me to still be careful and to avoid salad bars, but as far as some of the things I was avoiding that I was free to stuff my fat little face :))
So I'm about three months beyond transplant and doing well. I was off for two months after returning home and went back to work on January 3. I am totally in remission, so the transplant was a success, praise God. Sorry for going so long with my comment. Hope someone finds it helpful.
Brian:
Wow, 20 pounds in 20 days. You should try and figure out how to market that, you'll make millions. (Sorry, sometimes dark humor is the best humor.)
Thanks for reminding me about mouth rinse, I'd forgotten. I was instructed to rinse my mouth with warm salty water "often" throughout the day. My mouth was coated with a terrible blanket for at least a couple weeks. I'm sure that had a lot to do with food and water tasting so bad. I did rinse with warm salty water often. It gave me some relief from the awful coating, and I was told it helped to prevent the mouth sores from attacking me.
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