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Re: Post stem cell transplant (SCT) experiences
Mark, I had 2 stem cell transplants in 2011, July and October. I was 63 at the time and diagnosed with high-risk multiple myeloma. It was all outpatient. I continued to work although I did miss a lot of work time that year. I had no neuropathy, no nausea, no diarrhea, no mouth sores, minimal loss of appetite, and some fairly significant fatigue. Since the last stem cell transplant, I have been on weekly Velcade, Revlimid, and dex. I had a blood clot in my leg that resolved quickly. I had pneumonia last year that resolved fairly easily. I still have not been in the hospital. I continue to have some fatigue and muscle cramps but not much else. I continue to work, walk 2 to 3 miles, go fishing, and play tennis, doubles. I think i have been very fortunate.
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davidmackey
Re: Post stem cell transplant (SCT) experiences
I just want to thank everyone who has contributed to this discussion. It's really helpful to read all the experiences everyone has had, not least because of the common themes that seem to be popping up here and there.
Re: Post stem cell transplant (SCT) experiences
I'm about 45 days out from my stem cell transplant and really feel much better these days.. Took a walk outside today for about 10 minutes and that felt really great. VSH mentioned going on drives with her husband. I've also found that I feel much better mentally (and physically) if I try to do at least one thing each day that "gets me out" is good. Even riding along with my husband (still not driving) helps.
Exercise sure does help, too. I do some light exercise I got from the physical therapist at the hospital and I even just walk in my apartment (pollen, etc. are problems), which helps. I've found that having a kind of "structure" of when I do exercise has helped keep me at it.
Thanks to everyone who has posted. I appreciate reading your comments and being part of the forum community.
Wishing all a good afternoon.
Exercise sure does help, too. I do some light exercise I got from the physical therapist at the hospital and I even just walk in my apartment (pollen, etc. are problems), which helps. I've found that having a kind of "structure" of when I do exercise has helped keep me at it.
Thanks to everyone who has posted. I appreciate reading your comments and being part of the forum community.
Wishing all a good afternoon.
Re: Post stem cell transplant (SCT) experiences
Hi Mark,
About 4 weeks after my stem cell transplant I developed the same symptom as you, really itchy face and chest. I found it to be the worst side effect I had, it was just so itchy. Doctor prescribed me diprobase and cortisone creams and that really helped, it went away after a few weeks.
Like others here, I found making sure I got out of the house and had some exercise every day helped. But don't over do it, or you pay the next day.
And for those facing a stem cell transplant, I'd recommend getting in shape before transplant if you can too.
Good luck with your recovery,
Laura
About 4 weeks after my stem cell transplant I developed the same symptom as you, really itchy face and chest. I found it to be the worst side effect I had, it was just so itchy. Doctor prescribed me diprobase and cortisone creams and that really helped, it went away after a few weeks.
Like others here, I found making sure I got out of the house and had some exercise every day helped. But don't over do it, or you pay the next day.
And for those facing a stem cell transplant, I'd recommend getting in shape before transplant if you can too.
Good luck with your recovery,
Laura
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LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
Re: Post stem cell transplant (SCT) experiences
Reading through these experiences, I'm reminded that I also had a rash that was more prevalent on my face and chest. It started the day after I got home, which would have been day 15 for me. I always wondered if it had to do with the antibiotic they sent home with me. I'd never had it before and I can't remember the name now. It was a disgusting yellow goo.
They took me off of that and everything else except the valcyclovir, and put me on Pepcid and two antihistamines. Nothing really changed except that the rash slowly went away. It was only kind of bad for a couple of weeks and was completely gone in about two months.
Other than that, I had a fairly easy time. I had limited nausea and diarrhea. I was driving the first week but not far. It took a little longer to feel energetic but I'd say at about two months I felt close to normal except for being bald.
My M-spike went down from a 0.9 to a 0.35 but is now 1.2 at 6 months post. In my case, I don't think the transplant helped me much, but the recovery wasn't bad either. I'm glad I tried it so I wouldn't always wonder if I should have done it.
Everyone's experience is different and the maddening thing is that this disease is so unpredictable. I hope as spring turns to summer you find that you're feeling like your old self again Mark.
They took me off of that and everything else except the valcyclovir, and put me on Pepcid and two antihistamines. Nothing really changed except that the rash slowly went away. It was only kind of bad for a couple of weeks and was completely gone in about two months.
Other than that, I had a fairly easy time. I had limited nausea and diarrhea. I was driving the first week but not far. It took a little longer to feel energetic but I'd say at about two months I felt close to normal except for being bald.
My M-spike went down from a 0.9 to a 0.35 but is now 1.2 at 6 months post. In my case, I don't think the transplant helped me much, but the recovery wasn't bad either. I'm glad I tried it so I wouldn't always wonder if I should have done it.
Everyone's experience is different and the maddening thing is that this disease is so unpredictable. I hope as spring turns to summer you find that you're feeling like your old self again Mark.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Post stem cell transplant (SCT) experiences
I had an autologous stem cell transplant at Mayo Rochester on February 11 this year. I am 61 years old and at “standard risk”. I had little difficulty with the procedure, and was well cared for at Mayo (had two great caregivers, and the good fortune to live at Gift of Life Transplant house for the COLD five week period). I had no inpatient stay for symptom management during the time at Mayo, which is a bit unusual. I was back to work half time two weeks after returning home, and I am back full time now (college prof).
The most challenging part is day +5 to day +12 or so, when the immune system is at its lowest point. I was pretty lethargic those days. And it is difficult to eat when you don’t really want to, although my appetite came back quickly when I got home! Overall, despite my very good response last fall to Revlimid-dexamethasone induction, I am glad I did the ASCT. Being “aggressive’ up front was the right choice for me. I greatly respect those who decide otherwise. I think we all wish there was better / more science to inform our treatment decisions.
I go back to Mayo in early June for bone marrow biopsy. We’ll see where we go from there. I think my doc may be inclined to watch and wait rather than to start maintenance, if my numbers are good. That makes me a bit nervous. But we’ll cross that bridge when we come to it.
The most challenging part is day +5 to day +12 or so, when the immune system is at its lowest point. I was pretty lethargic those days. And it is difficult to eat when you don’t really want to, although my appetite came back quickly when I got home! Overall, despite my very good response last fall to Revlimid-dexamethasone induction, I am glad I did the ASCT. Being “aggressive’ up front was the right choice for me. I greatly respect those who decide otherwise. I think we all wish there was better / more science to inform our treatment decisions.
I go back to Mayo in early June for bone marrow biopsy. We’ll see where we go from there. I think my doc may be inclined to watch and wait rather than to start maintenance, if my numbers are good. That makes me a bit nervous. But we’ll cross that bridge when we come to it.
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Anonymous
Re: Post stem cell transplant (SCT) experiences
Mark,
First of all, you are very lucky that your myeloma was diagnosed with as young as you are. As a physical therapist, I treated a young man with myeloma a few years ago who was 19. But, from reading his medical history, it was apparent to me that he probably had had active myeloma since he was at least 13.
Anyway, my post transplant symptoms were similar to what you are experiencing now. I had nausea multiple times a day for at least 3 months that wasn't helped with any of the anti-nausea medications that I was given. I just made sure that I had lined trash cans strategically placed around the house for the sudden bouts of vomiting. It took almost 6 months before most foods were reintroduced to my diet without problems. There are still a few things, however, that I can't tolerate the thought of eating, and when I have tried them I haven't been able to tolerate them.
A month after my transplant I developed a full body rash that nearly drove me to scratch my skin off. My oncologist didn't know what had caused it, but thought it might be a graft vs myeloma reaction, which was good. He took me off all of the medications that I was on just in case it was a drug reaction. The dermatologist gave me a prescription steroid ointment to use, which helped a little bit. I also took Benadryl [diphenhydramine], which made the itching tolerable. Gradually the rash resolved, but it came back whenever I was in the sun even for a few minutes, although I religiously used sun screen. This lasted for the first year.
I had to go back to work at 10 weeks post transplant or lose my job. I wasn't really ready at that time because I still tired quite easily. Working as a PT is tiring even when you are healthy, but for several months after I went back to work I would come home and fall into bed because of the fatigue. This also gradually improved.
I still tire more easily than prior to the transplant, but I allow myself down time to rest when I need it. My cognitive abilities are much slower than they were prior to transplant, too. For me, it's hard to know how much is chemo brain related and how much is age related.
I also got out every day once I was home to walk, go shopping, go to movies, etc. I tried to do something every day just to feel more normal and to build up my stamina.
One thing that is important is that you need to listen to what your body is telling you. Even if you feel great one day and do tons of stuff, you may collapse from fatigue the next day or two. Try to keep your activity level at an even level, gradually increasing what you do each day so that you don't have those collapses. Rest when your body tells you to rest. You don't necessarily need to nap, but just stopping and doing nothing for 15 minutes can be quite restorative.
I began to feel more like me about 9 months post transplant. It was very frustrating at times, but I could see the progress as I moved farther from the transplant. My oncologist was quite a cheerleader for me, reminding me about how I was feeling and doing 4, 6, 8, 12, etc, weeks previously.
You will get there. And, you have your youth in your favor. Just be mindful of the fact that you can't go out and do everything that someone of your age can do right now. But it isn't forever.
All of the best to you,
Nancy in Phila
First of all, you are very lucky that your myeloma was diagnosed with as young as you are. As a physical therapist, I treated a young man with myeloma a few years ago who was 19. But, from reading his medical history, it was apparent to me that he probably had had active myeloma since he was at least 13.
Anyway, my post transplant symptoms were similar to what you are experiencing now. I had nausea multiple times a day for at least 3 months that wasn't helped with any of the anti-nausea medications that I was given. I just made sure that I had lined trash cans strategically placed around the house for the sudden bouts of vomiting. It took almost 6 months before most foods were reintroduced to my diet without problems. There are still a few things, however, that I can't tolerate the thought of eating, and when I have tried them I haven't been able to tolerate them.
A month after my transplant I developed a full body rash that nearly drove me to scratch my skin off. My oncologist didn't know what had caused it, but thought it might be a graft vs myeloma reaction, which was good. He took me off all of the medications that I was on just in case it was a drug reaction. The dermatologist gave me a prescription steroid ointment to use, which helped a little bit. I also took Benadryl [diphenhydramine], which made the itching tolerable. Gradually the rash resolved, but it came back whenever I was in the sun even for a few minutes, although I religiously used sun screen. This lasted for the first year.
I had to go back to work at 10 weeks post transplant or lose my job. I wasn't really ready at that time because I still tired quite easily. Working as a PT is tiring even when you are healthy, but for several months after I went back to work I would come home and fall into bed because of the fatigue. This also gradually improved.
I still tire more easily than prior to the transplant, but I allow myself down time to rest when I need it. My cognitive abilities are much slower than they were prior to transplant, too. For me, it's hard to know how much is chemo brain related and how much is age related.
I also got out every day once I was home to walk, go shopping, go to movies, etc. I tried to do something every day just to feel more normal and to build up my stamina.
One thing that is important is that you need to listen to what your body is telling you. Even if you feel great one day and do tons of stuff, you may collapse from fatigue the next day or two. Try to keep your activity level at an even level, gradually increasing what you do each day so that you don't have those collapses. Rest when your body tells you to rest. You don't necessarily need to nap, but just stopping and doing nothing for 15 minutes can be quite restorative.
I began to feel more like me about 9 months post transplant. It was very frustrating at times, but I could see the progress as I moved farther from the transplant. My oncologist was quite a cheerleader for me, reminding me about how I was feeling and doing 4, 6, 8, 12, etc, weeks previously.
You will get there. And, you have your youth in your favor. Just be mindful of the fact that you can't go out and do everything that someone of your age can do right now. But it isn't forever.
All of the best to you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Post stem cell transplant (SCT) experiences
At two months things started to turn around. I found some foods I could tolerate (a lot of watered down Gatorade, plain chicken and rice, and noodles - so basically basic carb type stuff) and started to get out and go for a walk most days. This helped get my energy up, being more active. For the stomach, steroids gave me gastritis, so I was on higher dose of PPI's (Zantac and another one).
I also had a rash on my face. In my case, I had a similar rash on my face a few years before my diagnosis that took three different dermatologist referrals to figure out. It was a mix of perioral dermatitis and seborrheic dermatitis. I got a special compound cream at the pharmacy and it cleared up. After my transplant I got a refill and it cleared it up.
I also had a rash on my face. In my case, I had a similar rash on my face a few years before my diagnosis that took three different dermatologist referrals to figure out. It was a mix of perioral dermatitis and seborrheic dermatitis. I got a special compound cream at the pharmacy and it cleared up. After my transplant I got a refill and it cleared it up.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Post stem cell transplant (SCT) experiences
I found this a very helpful thread, I do think the transplant post-recovery phase is seriously underestimated. Plenty of people talk about the transplant itself, but I have personally found the post-recovery very challenging. Thanks to everyone for sharing.
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wenlock00 - Name: Wenlock00
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: Post stem cell transplant (SCT) experiences
Interesting. I experienced none of that post transplant. I felt better than I had in several years.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
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