Hi All,
My husband was diagnosed 3/3/2014 with multiple bone lesions and a broken vertebrae . We spent the first 30 days in the hospital. His response to VRD has been slower than what they would like to see. The latest news is that he is p53 high risk . We are set up to meet with the stem cell transplant team next month at Stanford. He is 48 years old and basically sits in the house all day waiting to feel better.
I would love feedback on the stem cell transplant and quality of life. Right now, we only get out on doctor appointment days, grab lunch, and get back home. I hope life will get back to normal at some point. He just had too many lesions plus an extramedullary tumor grow after the first back surgery.
I seem to be rambling, but I am frustrated with the disease and its different presentations. Feedback on quality of life after SCT would be appreciated.
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8 posts
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Kray - Name: Kelle
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/3/2014
- Age at diagnosis: 47
Re: Quality of life after a stem cell transplant?
I think you'll find some people who have a great quality of life after the transplant and some who struggled and perhaps their quality of life is worse. I'm not sure what factors contribute to the differences. Perhaps it has something to do with how healthy a person is going into the transplant or the risk factors that each person has.
I'll give you my quality of life description after my transplant, but it may not be a good comparison to your husband's situation because, unlike your husband, I had no problems with bones or kidneys when I was diagnosed. Hopefully someone who had significant bone involvement can give you some feedback on how they feel after their transplant.
I am now about 5 1/2 months post auto transplant and I feel as good as I did before the transplant ... which is very good. I have a great quality of life.
I was diagnosed in 2013 and went through 5 cycles of VRD in and was in complete remission after the 3rd cycle. I then had an auto stem cell transplant in Feb 2014. It took me about 3-4 months after the transplant to recover and get back to the point where I felt normal again. I am now biking up to 15 miles 2-3 times a week, swimming a mile 2-3 times a week, and lifting weights a couple of times a week.
In other words, I'm back to my pre-transplant workouts again. I asked my doctor why I had such a quick recovery, and he guessed that it was probably that I had been very physically active working out prior to the transplant.
Good luck to your husband and his transplant!
I'll give you my quality of life description after my transplant, but it may not be a good comparison to your husband's situation because, unlike your husband, I had no problems with bones or kidneys when I was diagnosed. Hopefully someone who had significant bone involvement can give you some feedback on how they feel after their transplant.
I am now about 5 1/2 months post auto transplant and I feel as good as I did before the transplant ... which is very good. I have a great quality of life.
I was diagnosed in 2013 and went through 5 cycles of VRD in and was in complete remission after the 3rd cycle. I then had an auto stem cell transplant in Feb 2014. It took me about 3-4 months after the transplant to recover and get back to the point where I felt normal again. I am now biking up to 15 miles 2-3 times a week, swimming a mile 2-3 times a week, and lifting weights a couple of times a week.
In other words, I'm back to my pre-transplant workouts again. I asked my doctor why I had such a quick recovery, and he guessed that it was probably that I had been very physically active working out prior to the transplant.
Good luck to your husband and his transplant!
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Quality of life after a stem cell transplant?
My husband is also high risk 17p53. He was diagnosed in spring of 2011. He did not have the bone problems or extramedullary tumor that your husband is dealing with. He had moderate pain and fatigue. He was started on VRD [Velcade, Revlimid, dexamethasone], and felt fairly lousy from it (mainly crashing from the dex and fatigue from the Revlimid). He had his ASCT in October of 2011. At the time his m-spike had not gotten as low as they would have liked it.
Fast forward to now ...
He recovered fairly quickly from the transplant (though he was quite ill during it). Since then, we have traveled a lot, he works 2 days a week (could work full time if he wanted), goes to the gym 4 times a week, rides a motorcycle, etc.
Unfortunately, his m-spike is rising again and they have had to up his Revlimid, Velcade, and add dex. back in. The doses are less than pre-transplant. He is having the same side effects as pre-transplant, but to a much lesser extent.
The last 2.5 years have been quite good, and he would do the transplant again in a heartbeat. He is 57.
I wish the same for your husband.
Fast forward to now ...
He recovered fairly quickly from the transplant (though he was quite ill during it). Since then, we have traveled a lot, he works 2 days a week (could work full time if he wanted), goes to the gym 4 times a week, rides a motorcycle, etc.
Unfortunately, his m-spike is rising again and they have had to up his Revlimid, Velcade, and add dex. back in. The doses are less than pre-transplant. He is having the same side effects as pre-transplant, but to a much lesser extent.
The last 2.5 years have been quite good, and he would do the transplant again in a heartbeat. He is 57.
I wish the same for your husband.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Quality of life after a stem cell transplant?
Mine was great for 3 1/2 years. My multiple myeloma has returned and I've gone on Revlimid and the side effects of it haven't been pleasant, but what are you gonna do? It could always be worse.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Quality of life after a stem cell transplant?
I was diagnosed just over a year ago, had quite a lot of bone pain. I immediately started VRD. Had some of the usual side effects from the treatment, not serious but they were there and the bone pain, primarily in my ribs persisted. I also had a severe reaction to Zometa that left me barely able to walk for about 3 weeks.
Had a transplant the end of January this year. Came through ti fairly well compared to most and went back to work full time about 4 weeks later.
Right now my quality of life is far better than it was last summer. The bone pain is minimal. I am on Revlimid maintenance and have virtually no side effects so far.
Had a transplant the end of January this year. Came through ti fairly well compared to most and went back to work full time about 4 weeks later.
Right now my quality of life is far better than it was last summer. The bone pain is minimal. I am on Revlimid maintenance and have virtually no side effects so far.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Quality of life after a stem cell transplant?
Hi Kray,
Sorry to hear about your husbands diagnosis. I did a tandem auto - myeloablative (that means I used high dose chemo) allo in 2011. My QOL is back to what it was prior to diagnosis, other than the damage the myeloma did to my back prior to diagnosis. The posts prior seem like an excellent summary to me.
Be careful when reading posts here at the Beacon that discuss QOL of transplant patients. For some reason, patients who have never used high dose chemotherapy (auto transplant) keep writing that they diminish QOL, even though they have never done one. In the short term, transplants can be difficult, but Goldmine, WayneK, Rumnting, and DallasGG's experiences are in line with what I experienced.
Also note that Robin Roberts of Good Morning America used high dose chemotherapy prior to her allo transplant back in 2012. Looks like she is doing great to me. You can read about her experience online, but know that an auto transplant like you are discussing is not as challenging as an allo.
Best of luck as things move forward.
Mark
Sorry to hear about your husbands diagnosis. I did a tandem auto - myeloablative (that means I used high dose chemo) allo in 2011. My QOL is back to what it was prior to diagnosis, other than the damage the myeloma did to my back prior to diagnosis. The posts prior seem like an excellent summary to me.
Be careful when reading posts here at the Beacon that discuss QOL of transplant patients. For some reason, patients who have never used high dose chemotherapy (auto transplant) keep writing that they diminish QOL, even though they have never done one. In the short term, transplants can be difficult, but Goldmine, WayneK, Rumnting, and DallasGG's experiences are in line with what I experienced.
Also note that Robin Roberts of Good Morning America used high dose chemotherapy prior to her allo transplant back in 2012. Looks like she is doing great to me. You can read about her experience online, but know that an auto transplant like you are discussing is not as challenging as an allo.
Best of luck as things move forward.
Mark
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Mark
Re: Quality of life after a stem cell transplant?
Sorry to hear of problems, Kray. Hoping for a turnaround in your husband.
Yes, please ignore all comments contrary to Mark's oft stated position, and especially those expressing common sense and experience. Please also ignore the posted survey responses of those reporting on the difficulty of SCT's and QOL issues.
(Featured Past Poll (Oct 2013): How difficult was your first autologous stem cell transplant?)
After all, they are just idiots, too.
This is indeed a frustrating disease, with variable presentations, symptoms, and responses to treatment(s). The saying--Your mileage may vary...definitely applies.
Good Luck.
Yes, please ignore all comments contrary to Mark's oft stated position, and especially those expressing common sense and experience. Please also ignore the posted survey responses of those reporting on the difficulty of SCT's and QOL issues.
(Featured Past Poll (Oct 2013): How difficult was your first autologous stem cell transplant?)
After all, they are just idiots, too.
This is indeed a frustrating disease, with variable presentations, symptoms, and responses to treatment(s). The saying--Your mileage may vary...definitely applies.
Good Luck.
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Rneb
Re: Quality of life after a stem cell transplant?
It's more mental than physical I think.
Been 1.5 years since my transplant and I'm not where I was before diagnosis, but I have accepted my new normal and enjoy my life. You have to get to that point mentally where you are ok with the new normal. I got to that point during my recovery from the SCT. A day thinking about how your life use to be is a wasted day. Work around side effects and physical limitations to continue to enjoy life. I suspect your husband just needs more time to get to this mental state. Jerry
Been 1.5 years since my transplant and I'm not where I was before diagnosis, but I have accepted my new normal and enjoy my life. You have to get to that point mentally where you are ok with the new normal. I got to that point during my recovery from the SCT. A day thinking about how your life use to be is a wasted day. Work around side effects and physical limitations to continue to enjoy life. I suspect your husband just needs more time to get to this mental state. Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
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