I have read several posts about autologous stem cell transplants (ASCTs), and many of these posts are about how tough the procedure is or that the procedure didn't improve their multiple myeloma. These posts have been very informative, as are the ones where the ASCT procedure has had positive outcomes.
If any Beacon members would like to share their positive experiences with ASCT, I would appreciate reading those.
Thanks!
Forums
Re: Any positive experiences with ASCT?
Mine was fairly uneventful and seems to have been (so far) fairly successful. I had it in February of 2013 and spent fifteen days in the hospital in a fairly nice private room. I had some issues with nausea, which were well controlled with anti-emetics. (Really, the quality of the hospital food was much more off-putting than the nausea.) Otherwise, it really wasn't too difficult a time.
After getting home, I spent about a week just sitting on the couch. After that, I was up and walking every day. I wasn't allowed to go back to work for another couple of months and I found that time to be delightful. I felt good and spent my time on long walks, cooking for my family, reading, etc. I thought of it as a "retirement preview".
Since then, my blood work's been pretty good although, of course, the myeloma is still there. I have an M-spike that goes back and forth between 0.1 and undetectable and, so far, normal light chain numbers. I'm on 10 mg Revlimid daily for maintenance, which has no side effects that have been noticeable so far.
If my doctors recommend another one of these procedures when the disease kicks up again, I expect that I'll have no issue with doing it again (and I'll hope it goes as well as the last one did).
For background, I was 54 and otherwise in excellent health at the time of the transplant.
After getting home, I spent about a week just sitting on the couch. After that, I was up and walking every day. I wasn't allowed to go back to work for another couple of months and I found that time to be delightful. I felt good and spent my time on long walks, cooking for my family, reading, etc. I thought of it as a "retirement preview".
Since then, my blood work's been pretty good although, of course, the myeloma is still there. I have an M-spike that goes back and forth between 0.1 and undetectable and, so far, normal light chain numbers. I'm on 10 mg Revlimid daily for maintenance, which has no side effects that have been noticeable so far.
If my doctors recommend another one of these procedures when the disease kicks up again, I expect that I'll have no issue with doing it again (and I'll hope it goes as well as the last one did).
For background, I was 54 and otherwise in excellent health at the time of the transplant.
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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: Any positive experiences with ASCT?
I would say that my experience was pretty much the same as Mike F. I had mine in November of 2013 and am currently in the middle of receiving several rounds of vaccinations. There has been no sign of the disease since the transplant. Other than some muscle cramps caused by the Revlimid, I have no complaints.
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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
Re: Any positive experiences with ASCT?
My experience was similar to Mike F also. Most of my issues have been due to the spinal fractures prior, complicated by MS. One other plus: my hair came back darker, full, and curly!
BN
BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Any positive experiences with ASCT?
My husband had his transplant done outpatient. It was good he had his own bed at night. He had a day clinic to fall back on and used it daily for hydration and sometimes for anti-nausea medication. For about two weeks the trips to the clinic were daily.
He was expecting a much worse scenario but the whole process was totally manageable. I think being at home was such a plus. He got a very good partial response from the SCT and 18 months of remission. Unfortunately, he only had enough cells for one transplant.
Currently he is again in remission after treatment with Kyprolis (carfilzomib) / dex / Pomalyst.
He was expecting a much worse scenario but the whole process was totally manageable. I think being at home was such a plus. He got a very good partial response from the SCT and 18 months of remission. Unfortunately, he only had enough cells for one transplant.
Currently he is again in remission after treatment with Kyprolis (carfilzomib) / dex / Pomalyst.
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Mizzoumo - Name: Carolyn
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 2012
- Age at diagnosis: 68
Re: Any positive experiences with ASCT?
I had my ASCT at age 73, about 5 months after my diagnosis. My myeloma was asymptomatic and remains so. Preoperative lab tests before cataract surgery indicated myeloma to me (a physician familiar with myeloma for over 50 years).
ASCT was done at Barnes in St. Louis, where 14 million stems cells were harvested on the first day, enough for two transplants if necessary. There was very brief nausea during the melphalan infusion. The notion of taking a lethal dose of medication was far more troublesome psychologically than the infusion itself. My stem cells took quickly and I was out of the hospital in 1.5 weeks.
I have subsequently taken Revlimid 10 mg / day and monthly Zometa. Follow-up bone marrow aspiration showed very rare plasma cells instead of almost 70% and the blood counts and chemistry tests have been normal except for hypocalcemia due to the Zometa.
I still have no symptoms of myeloma, just a mild peripheral neuropathy from Velcade. The most fun of the transplant was meeting so many wonderful doctors, nurses, and janitors as well as other patients at Barnes.
ASCT was done at Barnes in St. Louis, where 14 million stems cells were harvested on the first day, enough for two transplants if necessary. There was very brief nausea during the melphalan infusion. The notion of taking a lethal dose of medication was far more troublesome psychologically than the infusion itself. My stem cells took quickly and I was out of the hospital in 1.5 weeks.
I have subsequently taken Revlimid 10 mg / day and monthly Zometa. Follow-up bone marrow aspiration showed very rare plasma cells instead of almost 70% and the blood counts and chemistry tests have been normal except for hypocalcemia due to the Zometa.
I still have no symptoms of myeloma, just a mild peripheral neuropathy from Velcade. The most fun of the transplant was meeting so many wonderful doctors, nurses, and janitors as well as other patients at Barnes.
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Bob the Barista
Re: Any positive experiences with ASCT?
The outcome of my stem cell transplant has been very good. I was in remission with my induction therapy August 2013 (Velcade, dex) and have continued to be in remission since my transplant December 2013. I had just turned 60 years old. I have / had Type 2 diabetes, hypothyroidism, morbidly obese, and other issues. I must admit, going through the 3 weeks in the hospital was very unpleasant (diarrhea mostly, lost 30 lbs - good for me), but since then results have been great! I am still in complete remission as of today (April 10, 2015). 
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Dottie K - When were you/they diagnosed?: 8/2013
- Age at diagnosis: 59
Re: Any positive experiences with ASCT?
I had an ASCT 5 months after diagnosis of very advanced multiple myeloma (in 2010). The SCT produced 19 months of remission, which was very positive, but the procedure itself was tough.
I had extreme nausea and vomiting, lost a lot of weight through being unable to eat, and spent about three weeks in the hospital. I found it extremely difficult to do even ordinary daily cares, and it took about 6 months to recover sufficiently to be able to do cooking and daily chores. It was quite some time before I was able to drive.
At the time, I swore I would never have another, but time has faded the physical and psychological effects, so I most likely would have another if need be. The remission period was great. I was told at the time that recovery would be about 6 months and have been surprised by some of the Beacon stories of easy SCT's with quick returns to work.
I've been wondering if the stage of one's myeloma or general state of health affects how one deals with the SCT process.
I had extreme nausea and vomiting, lost a lot of weight through being unable to eat, and spent about three weeks in the hospital. I found it extremely difficult to do even ordinary daily cares, and it took about 6 months to recover sufficiently to be able to do cooking and daily chores. It was quite some time before I was able to drive.
At the time, I swore I would never have another, but time has faded the physical and psychological effects, so I most likely would have another if need be. The remission period was great. I was told at the time that recovery would be about 6 months and have been surprised by some of the Beacon stories of easy SCT's with quick returns to work.
I've been wondering if the stage of one's myeloma or general state of health affects how one deals with the SCT process.
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kefrewin - Name: Karen Frewin NZ
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 53
Re: Any positive experiences with ASCT?
Hi Spirit,
Generally speaking, the studies show auto transplant patients recovering back to baseline levels or better by 2 months after the auto. I only did an auto because my insurance only paid for tandem auto - allo as opposed to the original plan of induction to allo, I would say I was fully recovered about 5-6 weeks after doing it. The auto did what I needed it to do - it got my from very good partial response (VGPR) to complete response (CR) so I could do my allo under optimal conditions (first complete response).
Four years since my transplants, I would rate my quality of life as on par with the general population. I only need Zometa quarterly due to bone damage I had at diagnosis. I take no other pharmaceutical drugs. Here is a link to a study on myeloma and lymphoma patients QOL after auto transplant.
Mark
Generally speaking, the studies show auto transplant patients recovering back to baseline levels or better by 2 months after the auto. I only did an auto because my insurance only paid for tandem auto - allo as opposed to the original plan of induction to allo, I would say I was fully recovered about 5-6 weeks after doing it. The auto did what I needed it to do - it got my from very good partial response (VGPR) to complete response (CR) so I could do my allo under optimal conditions (first complete response).
Four years since my transplants, I would rate my quality of life as on par with the general population. I only need Zometa quarterly due to bone damage I had at diagnosis. I take no other pharmaceutical drugs. Here is a link to a study on myeloma and lymphoma patients QOL after auto transplant.
Both multiple myeloma and lymphoma patients in our study had a negatively influenced QoL at baseline, indicating that both groups had been affected by their disease and treatment history, which probably had consequences for the ability to live their lives as they did before they were ill. Week 2 was the period during which patients felt the most affected in terms of overall quality of life, functional status and symptom burden. This week is a critical period because the auto-SCT treatment is completed and the patients’ WBCs are at their nadir, with infection and mucositis as a result. The results show the importance of conducting frequent follows-ups during transplantation in order to relieve symptoms in a timely manner. The patients recovered quickly and as early as week 3 they began to experience improvement. At 2 months after transplantation all scales on the EORTC QLQ C-30 had returned to baseline values, or better, for the whole group. To the best of our knowledge, this is one of the few studies showing a rapid recovery using EORTC QLQ C-30.6"
Source: Frödin, U et al, "A prospective evaluation of patients' health-related quality of life during auto-SCT: a 3-year follow-up," Bone Marrow Transplantation, 2011 (link to full text of article)
Mark
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Mark11
Re: Any positive experiences with ASCT?
I can't speak about how effective my husband's ASCT was yet as we are just 22 days post transplant; however, his experience was as positive as I can imagine. He was inpatient for 13 days and his only side effects were fatigue, bad taste in his mouth, and mild nausea. He did not get bad diarrhea, did not vomit, did not spike a fever, only needed 1 infusion of platelets and no other infusions (they also gave him platelets before sending him home for good measure). He ate and walked every day. He had a PICC line instead of a port, and that was removed prior to discharge.
He came home on Day +10 and felt completely fine and has been working from home daily from practically the minute he walked in the door. He walks daily, sometimes up to 5-6 miles. His appetite is completely back (since prior to discharge) and his GI issues – which were never too bad – resolved quickly. He still has a bad taste, but the transplant doc says that should go away in the next couple weeks as his taste buds repair.
His experience seemed so easy relative to others I have read about here that I worried they didn't give him enough chemo.
Also, he didn't start losing his hair when he came home, so he didn't look or feel like a cancer patient. We have since shaved his head and it has not grown back, so now he looks the part.
He came home on Day +10 and felt completely fine and has been working from home daily from practically the minute he walked in the door. He walks daily, sometimes up to 5-6 miles. His appetite is completely back (since prior to discharge) and his GI issues – which were never too bad – resolved quickly. He still has a bad taste, but the transplant doc says that should go away in the next couple weeks as his taste buds repair.
His experience seemed so easy relative to others I have read about here that I worried they didn't give him enough chemo.
Also, he didn't start losing his hair when he came home, so he didn't look or feel like a cancer patient. We have since shaved his head and it has not grown back, so now he looks the part.-
EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
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