Recent Diagnosed multiple myeloma with kidney failure on Hemodialysis 3x/week, 70 year old male, also heart problems, diabetic and high blood pressure.
On VCD regimen (Velcade, Cytoxan and Decadron). On cycle #2 now. Had EXCELLENT response from first cycle (labs ligh chain, m-protein lot, lot less)
Thinking about having stem cell transplant…but still researching and discussing.
I am a very active person and don’t feel or look my age at all (smile). Retire 4 yrs ago and loving it. MY high blood pressure and diabetes being control (hardly no meds) since on hemodialysis…only sliding scale Insulin for Decadron related high blood sugar.
Any feedback from my multiple myeloma community (patients, family members) will be very gratefully appreciated.
I have learned a lot from reading this info from all of you.
Thanks,
Ben looking for input
Forums
7 posts
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Re: Thinking about having a stem cell transplant
Hi, Ben- I just had my first auto SCT in December. I can tell you that the following will probably happen: your stomach and intestines will not be happy for a couple of months, though the main impact should last only for a couple of weeks shortly after the transplant itself. This means nausea, diarhea/constipation, gas, etc. Also, you will probably need to be hospitalized for a few days/week for either fever, or dehydration or trouble eating enough. You will get weak for awhile and suffer from chemo brain for awhile.
That said, you should recover nicely from all this within two months or so and can then move on.
Caveats include the facts that I had no underlying disease when I got mine at 69 yrs old; and these symptoms were mine, and were similar to those who had ASCT that I knew of (at Seattle Cancer Care Alliance).
If your docs recommend this to you, I would go for it, because at our age you may not get another chance at it though as they all say, "Everybody is different."
Good luck,
Eric
That said, you should recover nicely from all this within two months or so and can then move on.
Caveats include the facts that I had no underlying disease when I got mine at 69 yrs old; and these symptoms were mine, and were similar to those who had ASCT that I knew of (at Seattle Cancer Care Alliance).
If your docs recommend this to you, I would go for it, because at our age you may not get another chance at it though as they all say, "Everybody is different."
Good luck,
Eric
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blizard49 - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2012
- Age at diagnosis: 68
Re: Thinking about having a stem cell transplant
You may find this thread to be helpful in formulating a decision. I'd also suggest talking to at least two doctors that are in completely different oncology groups/organizations as you research this.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Good luck to you.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Good luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thinking about having a stem cell transplant
Hello, I supported my father through his ASCT in Dec. Everyone is different, so I'll just convey our experience. He followed the predicted path-got the Melphalan, they observed him in the hospital for 3 days. He had no fevers or issues. He was discharged with daily visits to the clinic where they monitored his labs daily. We were anticipating the Melphalan side effects. About day 10 his blood counts plummeted, he slept a lot. He did get diarrhea about 14 days in-was from cdiff. It was resolved with oral Flagyl. He did lose his appetite about 10 days in, but 60 days out has returned to normal.
The anticipation prior to was the worst part.
He was just cleared to be in public without his mask, he's exercising, working, "feeling good". His hemoglobin is now higher than its been for years!
We trusted & listened to his expert care team throughout. We were diligent in reporting any change in status. There are many pills to manage post transplant, but those decrease 60 days after.
I can't speak for him, but I know he did not hesitate to get the ASCT when it was offered as an option. I am glad he did it, we made it through.
Best of luck to you!
The anticipation prior to was the worst part.
He was just cleared to be in public without his mask, he's exercising, working, "feeling good". His hemoglobin is now higher than its been for years!
We trusted & listened to his expert care team throughout. We were diligent in reporting any change in status. There are many pills to manage post transplant, but those decrease 60 days after.
I can't speak for him, but I know he did not hesitate to get the ASCT when it was offered as an option. I am glad he did it, we made it through.
Best of luck to you!
Re: Thinking about having a stem cell transplant
Dear Ben,
In the US, patients who are age 70 often undergo autologous stem cell transplantation (also known as high-dose chemotherapy, typically melphalan, with stem cell rescue). It is more important to look at "biologic" age than "chronologic" age. In other words, how fit is the patient? Well controlled diabetes with no significant complications would not preclude high-dose chemotherapy. Well controlled high blood pressure is fine, as well. A prior history of a heart attack with no on-going angina would be OK. On the other hand, significant congestive heart failure would be a problem. It sounds like your "biologic" age is quite good and your other medical problems are beautifully controlled, which is great.
The biggest issue here is the kidney failure requiring dialysis. Is there any sense that this is getting better in light of the fact that the VCD regimen has worked so well? If the kidney function returns to normal or near normal, the decision is easier.
Transplant in the setting of severe kidney failure requiring dialysis has not been studied all that well. All of the information out there comes from the experiences of single institutions that have looked at their transplant outcomes in kidney failure patients retrospectively. What is out there would suggest that the risk of transplant increases in the setting of kidney failure. In early reports, the risk of a fatal outcome was on the order of 20% -- ~10-fold higher than expected for patients who undergo the procedure with normal kidney function.
However, a more recent report on 10 patients on dialysis who underwent transplant at M.D. Anderson revealed no transplant-related fatalities. In general, the supportive care in the setting of transplant has greatly improved over time, and I suspect that the early reports of alarmingly high mortality are not applicable to today.
Tough call. If you are fit and the kidney failure significantly improves, I would strongly consider it. If you remain dialysis dependent, I would tread cautiously and discuss the risks and benefits at length with your doctor. You have time to make a well informed decision.
Let us know what you decide to do. I am glad to hear that you are responding so well to treatment!
Pete V.
In the US, patients who are age 70 often undergo autologous stem cell transplantation (also known as high-dose chemotherapy, typically melphalan, with stem cell rescue). It is more important to look at "biologic" age than "chronologic" age. In other words, how fit is the patient? Well controlled diabetes with no significant complications would not preclude high-dose chemotherapy. Well controlled high blood pressure is fine, as well. A prior history of a heart attack with no on-going angina would be OK. On the other hand, significant congestive heart failure would be a problem. It sounds like your "biologic" age is quite good and your other medical problems are beautifully controlled, which is great.
The biggest issue here is the kidney failure requiring dialysis. Is there any sense that this is getting better in light of the fact that the VCD regimen has worked so well? If the kidney function returns to normal or near normal, the decision is easier.
Transplant in the setting of severe kidney failure requiring dialysis has not been studied all that well. All of the information out there comes from the experiences of single institutions that have looked at their transplant outcomes in kidney failure patients retrospectively. What is out there would suggest that the risk of transplant increases in the setting of kidney failure. In early reports, the risk of a fatal outcome was on the order of 20% -- ~10-fold higher than expected for patients who undergo the procedure with normal kidney function.
However, a more recent report on 10 patients on dialysis who underwent transplant at M.D. Anderson revealed no transplant-related fatalities. In general, the supportive care in the setting of transplant has greatly improved over time, and I suspect that the early reports of alarmingly high mortality are not applicable to today.
Tough call. If you are fit and the kidney failure significantly improves, I would strongly consider it. If you remain dialysis dependent, I would tread cautiously and discuss the risks and benefits at length with your doctor. You have time to make a well informed decision.
Let us know what you decide to do. I am glad to hear that you are responding so well to treatment!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Thinking about having a stem cell transplant at age 70
My husband had two stem cell transplants at UAMS in early 2011at the age of 68. Both were done on an outpatient basis with daily monitoring in the infusion clinic. He did have side effects, mostly intestinal, as well as fatigue and weakness, but they were fairly well controlled with medication. Before his treatment with chemo ever began, I seriously doubted he could endure the treatments, as he was very weak and sick. He had some rough days during treatment, but now he is on the other side and in remission. He is presently on maintenance of VRD and doing well. We have never once regretted the decision of getting a stem cell transplant.
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Louise
Re: Thinking about having a stem cell transplant at age 70
I know the testing and screening I was given before my Auto Stem Cell Transplant I got before the transplant was extensive and I would say after all the results are in you are still a good candidate for transplant then I would go for it. I went through the transplant pretty well I was an inpatient in the transplant unit at UPMC in Pittsburgh and was well enough to be discharged after only 16 days. Everyone is different but the norm I was told was 30 days. I did not find the transplant to be too bad although I must say It took me about 6 months to get my full strength back but I do not regret getting the transplant.
I had discussed my options with my doctors and I questioned which is best drug therapy or a transplant. I never got a concrete answer but I was told the transplant was the " standard of care " It was left up to me and was asked do I want a transplant? I got the impression that either was effective and the choice was mine. I do not know the answer but I was told that with the treatments being developed that the" trans plant would soon become archaic" . Take what you may from that?
Get all results weight the facts and make your decision is my best thoughts in this subject.
I had discussed my options with my doctors and I questioned which is best drug therapy or a transplant. I never got a concrete answer but I was told the transplant was the " standard of care " It was left up to me and was asked do I want a transplant? I got the impression that either was effective and the choice was mine. I do not know the answer but I was told that with the treatments being developed that the" trans plant would soon become archaic" . Take what you may from that?
Get all results weight the facts and make your decision is my best thoughts in this subject.
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genk - Name: Ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2011
- Age at diagnosis: 61
7 posts
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