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Re: Life after a stem cell transplant
My wife was diagnosed in September 2012 and had a auto stem cell transplant on February 6th and was back at work full time on March 4th. She has now started her Zumba classes and jogging and walking. She is 56 years old and was in great shape at the time we found out about the myeloma.
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jluc123
Re: Life after a stem cell transplant
I think what this thread demonstrates is that everyone is different in their recovery after a stem cell transplant.
It's great that some people seem to have a normal life a few weeks after the procedure, and I wish them well. However, it's not the same for everyone, and in my case I'm still battling with fatigue and back pain almost two months after mine.
We have to also consider fractures and lesions that don't repair immediately (if ever). A myeloma buddy of mine has had problems with his legs but hasn't had any problems with his back. He's graduated from crutches to a walker and has gone back to work part-time, but he's suffering from neuropathy in his feet and has had a ton of other issues. We had the transplants a day apart and are progressing at different speeds, although there are also some common features in both our recoveries.
I find this forum very useful to see how others are coping, the articles are informative, and being a fairly new member, I'm finding some comfort that I'm not the only one battling this disease. If people want to make negative comments anonymously, then I'm sorry for them as I think they should have better things to do with their time.
Wishing everyone on this site the very best.
It's great that some people seem to have a normal life a few weeks after the procedure, and I wish them well. However, it's not the same for everyone, and in my case I'm still battling with fatigue and back pain almost two months after mine.
We have to also consider fractures and lesions that don't repair immediately (if ever). A myeloma buddy of mine has had problems with his legs but hasn't had any problems with his back. He's graduated from crutches to a walker and has gone back to work part-time, but he's suffering from neuropathy in his feet and has had a ton of other issues. We had the transplants a day apart and are progressing at different speeds, although there are also some common features in both our recoveries.
I find this forum very useful to see how others are coping, the articles are informative, and being a fairly new member, I'm finding some comfort that I'm not the only one battling this disease. If people want to make negative comments anonymously, then I'm sorry for them as I think they should have better things to do with their time.
Wishing everyone on this site the very best.
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Life after a stem cell transplant
Do personalities change after a stem cell transplant? My family sees a big change. No patience, snappiness, moody, self centered, and oh more me. Do some medications make a change? Please help.
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rosestewart
Re: Life after a stem cell transplant
My experience is that dex can make you moody, snappish, and grumpy.
Re: Life after a stem cell transplant
Rose, I can't speak for the other changes you've noticed, but if it bothers you, I do think that making an effort to become less self-centered and more sensitive to the feelings of others is probably something you can work on to improve.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Life after a stem cell transplant
Hi Rose -
I wonder if it's less the medical end of the procedure than it is the psychological side of it that has you on edge? Being constantly reminded that your life will most certainly end at some point in the not-too-distant future is something that few of us are comfortable with. And there's nothing like having an incurable disease to remind you that your life WILL end. Maybe soon. A major medical procedure like a stem cell transplant certainly hammers home the point. If you haven't already done so, you might think about seeing a therapist to discuss what it is that is affecting you.
I wonder if it's less the medical end of the procedure than it is the psychological side of it that has you on edge? Being constantly reminded that your life will most certainly end at some point in the not-too-distant future is something that few of us are comfortable with. And there's nothing like having an incurable disease to remind you that your life WILL end. Maybe soon. A major medical procedure like a stem cell transplant certainly hammers home the point. If you haven't already done so, you might think about seeing a therapist to discuss what it is that is affecting you.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Life after a stem cell transplant
Hi Rose,
I second what TerriJ said: the kinds of changes you described are fairly common side effects of dexamethasone, unfortunately.
So my question would be - are you currently on maintenance therapy or consolidation therapy after your transplant where dex is part of your therapy? If so, it would be good to talk with your oncologist (or transplant specialist, if you're currently under the care of a transplant specialist) about what you're experiencing. Actually, it is probably a good idea to talk with your myeloma medical team about this, whether or not you're on dex. They may be able to make medication changes or point you to other resources that will help you.
Mike F also made a good point that we need to "recover" psychologically as well as medically after a transplant. In addition to "talking" about what you're experiencing here in the Beacon forum, there are range of other options for helping you connect with other myeloma patients, including multiple myeloma support groups and perhaps programs run by your treatment center.
And this last point is a long shot, but I'll mention it anyway. If you live near Philadelphia, the Philadelphia Multiple Myeloma Networking Group will be having their monthly meeting this Saturday. The topic is emotional resilience, which might be of interest to you.
Best wishes to you. Please keep us posted on how you are doing.
I second what TerriJ said: the kinds of changes you described are fairly common side effects of dexamethasone, unfortunately.
So my question would be - are you currently on maintenance therapy or consolidation therapy after your transplant where dex is part of your therapy? If so, it would be good to talk with your oncologist (or transplant specialist, if you're currently under the care of a transplant specialist) about what you're experiencing. Actually, it is probably a good idea to talk with your myeloma medical team about this, whether or not you're on dex. They may be able to make medication changes or point you to other resources that will help you.
Mike F also made a good point that we need to "recover" psychologically as well as medically after a transplant. In addition to "talking" about what you're experiencing here in the Beacon forum, there are range of other options for helping you connect with other myeloma patients, including multiple myeloma support groups and perhaps programs run by your treatment center.
And this last point is a long shot, but I'll mention it anyway. If you live near Philadelphia, the Philadelphia Multiple Myeloma Networking Group will be having their monthly meeting this Saturday. The topic is emotional resilience, which might be of interest to you.
Best wishes to you. Please keep us posted on how you are doing.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Life after a stem cell transplant
I think ... it's different for everybody.
That's pretty much it.
I had a bit of a rough time WITH the transplant, getting C. diff and taking ... lessee ... about three months to get to where I could handle anything but protein drinks and mashed potatoes ... and not wanting to do anything but sleep ...
But that was a year and a half ago. It did take quite awhile to 'get normal,' or perhaps that's 'get used to the new normal," but since I can do anything I want to do, I'll call it good.
As for getting on a bicycle and riding a hundred miles a week?
No thank you. I have my trusty tricycle that I ride to the store, and I never had ambitions to be an Olympic caliber skiier, runner, or to do five hundred pushups just because.
All my aches and pains are just your run of the mill 'I'm too old for this" aches and pains, having to do with bad knees, a bum hip, and a general disinclination to run up and down bleacher steps for fun.
So, all in all, I'd say that for me at least, life after a stem cell transplant is, well, life. Most of it is good, some of it is lousy, and more of it is terrific than lousy. So far.
That's pretty much it.
I had a bit of a rough time WITH the transplant, getting C. diff and taking ... lessee ... about three months to get to where I could handle anything but protein drinks and mashed potatoes ... and not wanting to do anything but sleep ...
But that was a year and a half ago. It did take quite awhile to 'get normal,' or perhaps that's 'get used to the new normal," but since I can do anything I want to do, I'll call it good.
As for getting on a bicycle and riding a hundred miles a week?
No thank you. I have my trusty tricycle that I ride to the store, and I never had ambitions to be an Olympic caliber skiier, runner, or to do five hundred pushups just because.
All my aches and pains are just your run of the mill 'I'm too old for this" aches and pains, having to do with bad knees, a bum hip, and a general disinclination to run up and down bleacher steps for fun.
So, all in all, I'd say that for me at least, life after a stem cell transplant is, well, life. Most of it is good, some of it is lousy, and more of it is terrific than lousy. So far.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Life after a stem cell transplant
We are all different, that's for sure.
First off, I should state that my primary diagnoses is amyloidosis. I like to say I have a major in that, and a minor in multiple myeloma. It's smoldering, based on a 40% plasma cell count on my first BMB in 2013. I feel like I belong here, because I went through an SCT 8 months ago and have experienced all the same treatment as many of you. MY SCT is chronicled here under "KimT's Stem Cell Transplant (Stanford, Inpatient),"
While I felt kind of weak during the transplant process, when I got home on Day 27, everything changed. I think it was because I was no longer required to wear the the HEPA mask that Stanford requires when you are on the first 30 days.
I have a firm belief that exercise breeds energy. I walked 2 miles the first day I was home. A week later, I started to run again. It was really hard. I was really slow. I had to work hard, and I had to have a lot of patience.
But on March 1st, I finished a marathon (26.2 miles). My time wasn't my best, but it was not my worst, either.
A week ago, I ran a half marathon (13.1 miles) within one second of my fastest one ever, pre disease.
I don't say this to get a bunch of high fives ... for all I know, you might hate me.
I say this because you have to write your own story.
It is up to you.
I was prepared to have a long recovery, where I would not be 'me' for a long time. And that isn't what happened at all.
I have never felt better in my life.
And the appreciation I have for those around me is at all time high.
I am just putting this out there so you know that the possibility is there. Normal life can happen.
First off, I should state that my primary diagnoses is amyloidosis. I like to say I have a major in that, and a minor in multiple myeloma. It's smoldering, based on a 40% plasma cell count on my first BMB in 2013. I feel like I belong here, because I went through an SCT 8 months ago and have experienced all the same treatment as many of you. MY SCT is chronicled here under "KimT's Stem Cell Transplant (Stanford, Inpatient),"
While I felt kind of weak during the transplant process, when I got home on Day 27, everything changed. I think it was because I was no longer required to wear the the HEPA mask that Stanford requires when you are on the first 30 days.
I have a firm belief that exercise breeds energy. I walked 2 miles the first day I was home. A week later, I started to run again. It was really hard. I was really slow. I had to work hard, and I had to have a lot of patience.
But on March 1st, I finished a marathon (26.2 miles). My time wasn't my best, but it was not my worst, either.
A week ago, I ran a half marathon (13.1 miles) within one second of my fastest one ever, pre disease.
I don't say this to get a bunch of high fives ... for all I know, you might hate me.
I say this because you have to write your own story.
It is up to you.
I was prepared to have a long recovery, where I would not be 'me' for a long time. And that isn't what happened at all.
I have never felt better in my life.
And the appreciation I have for those around me is at all time high.
I am just putting this out there so you know that the possibility is there. Normal life can happen.
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Life after a stem cell transplant
Kim?
Bless you, and I honestly will hand you all the high fives I can muster. People who run feel good, look better, and are due all the admiration I can heap upon them.
As for me, though, I am reminded of that old joke about the patient who went to the doctor with an ailment and, after listening to the diagnosis, asked if he could still play the violin.
The doc said "certainly you can!"
The patient said "Good, because I never could before."
THAT is what I think of when I think of me running marathons after stem cell transplants!
My own marathons consist of seeing if I can design one, and knit two, Shetland Lace shawls in a month, getting three papers in before the weekend publication due date, figuring out how to get my father to the DMV, my mother to her physical therapist, and me to rehearsal for the concert on Saturday. Lots of stairs to go up and down, though. I can feel virtuous about those.
I actually end up feeling GUILTY when I take time out to exercise; I SHOULD be doing something else ... there's always something else.
Ok, I'll admit it; there's always something else I'd rather do ... like getting all my teeth pulled.
Without anesthesia.
Not to mention that walking and running in the desert where the temperature averages above a hundred and the scenery sucks isn't exactly diverting.
Nevertheless, I'm lucky, I'm blessed, and I'm happy. It's a darned good life, all in all.
Bless you, and I honestly will hand you all the high fives I can muster. People who run feel good, look better, and are due all the admiration I can heap upon them.
As for me, though, I am reminded of that old joke about the patient who went to the doctor with an ailment and, after listening to the diagnosis, asked if he could still play the violin.
The doc said "certainly you can!"
The patient said "Good, because I never could before."
THAT is what I think of when I think of me running marathons after stem cell transplants!
My own marathons consist of seeing if I can design one, and knit two, Shetland Lace shawls in a month, getting three papers in before the weekend publication due date, figuring out how to get my father to the DMV, my mother to her physical therapist, and me to rehearsal for the concert on Saturday. Lots of stairs to go up and down, though. I can feel virtuous about those.
I actually end up feeling GUILTY when I take time out to exercise; I SHOULD be doing something else ... there's always something else.
Ok, I'll admit it; there's always something else I'd rather do ... like getting all my teeth pulled.
Without anesthesia.
Not to mention that walking and running in the desert where the temperature averages above a hundred and the scenery sucks isn't exactly diverting.
Nevertheless, I'm lucky, I'm blessed, and I'm happy. It's a darned good life, all in all.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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