My husband started his treatment yesterday, Revlimid/Velcade/Dex. Actually waiting on the Revlimid to be delivered, we had no idea it was so restricted.
He has surprised me with not being inclined to go through stem cell transplant (SCT). Have any of you chosen not to do the transplant even though you were a good candidate? What treatment did you continue with? What were the consequences? For those who did a stem cell transplant, did the benefits outweigh the risks?
According to his diagnostics, he has the good genetics side of multiple myeloma, no other health issues, stage II, with possible amyloidosis (still testing his biopsy for that.). He has lost about 8 pounds over 3 months.
Also, he has kidney stones. Anyone else?
AnnieB
Forums
Re: Is/was SCT in your treatment plan from the start?
Ann,
You have touched on a subject that is discussed a lot on this forum. You will find folks with opinions and decisions that range from pursuing naturopathic-only treatments to drug-only approaches to auto SCT to allo SCT, and variations thereof. You will also find doctors and facilities that will have this same range of opinions.
While I haven't personally progressed to the point where I need treatment yet, I've already decided to not pursue an SCT and instead rely on the new drugs that have come on the scene in recent months and years.
But you and your husband really need to find your own way and remember that every situation with multiple myeloma is a snow flake. No decision is perfect and all decisions are to be respected. I would personally suggest that you talk to doctors that endorse SCTs and those that don't and make your own decision.
Dr. Berenson at the IMBCR and Dr. Barlogie at UAMS are good examples of these two conventional treatment extremes, and you can google on both of these guys to get a better idea of their philosophies. The Mayo would fall somewhere inbetween as they are now endorsing a wait and see approach on SCTs in various situations.
I personally found this thread to be a good starting point for understanding these debates. There are other threads that I'm sure folks on this forum will point you to.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Good luck
You have touched on a subject that is discussed a lot on this forum. You will find folks with opinions and decisions that range from pursuing naturopathic-only treatments to drug-only approaches to auto SCT to allo SCT, and variations thereof. You will also find doctors and facilities that will have this same range of opinions.
While I haven't personally progressed to the point where I need treatment yet, I've already decided to not pursue an SCT and instead rely on the new drugs that have come on the scene in recent months and years.
But you and your husband really need to find your own way and remember that every situation with multiple myeloma is a snow flake. No decision is perfect and all decisions are to be respected. I would personally suggest that you talk to doctors that endorse SCTs and those that don't and make your own decision.
Dr. Berenson at the IMBCR and Dr. Barlogie at UAMS are good examples of these two conventional treatment extremes, and you can google on both of these guys to get a better idea of their philosophies. The Mayo would fall somewhere inbetween as they are now endorsing a wait and see approach on SCTs in various situations.
I personally found this thread to be a good starting point for understanding these debates. There are other threads that I'm sure folks on this forum will point you to.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Good luck
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is/was SCT in your treatment plan from the start?
Thank you, Multibilly, for the link to this discussion. That was heavy reading but learned so much. Lots to think about.
AnnieB
AnnieB
Re: Is/was SCT in your treatment plan from the start?
For what it's worth, I planned my auto-SCT from the start. Did four courses of Rev/Dex, which brought my M-spike and light chain numbers down but not to normal ranges. Then did two courses of Velcade/high dose Dex which killed the M-spike completely and put my light chain numbers into the normal range. Went in for the SCT right after that. I did not find the SCT to be very difficult at all.
Obviously, that's just what I found to be the most appealing treatment for me. This is one disease that offers a smorgasbord of therapeutic options, and there are plenty of others who would go with your husband's plan. You can always move on the the SCT if the drugs don't give the response you're looking for.
Obviously, that's just what I found to be the most appealing treatment for me. This is one disease that offers a smorgasbord of therapeutic options, and there are plenty of others who would go with your husband's plan. You can always move on the the SCT if the drugs don't give the response you're looking for.
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Mike Filigenzi
Re: Is/was SCT in your treatment plan from the start?
Annie B,
My doctor and I had planned for ASCT all along, did 4 Rev/Dex and another Rev. I went through the transplant with no problem, some other patients might some problems but that's depended on each individual. I had my transplanted on 11/12, now on remission and on Rev for maintenance.
Your husband is in good health overall so he should go through SCT with no problem. Remember to eat lots of ice during & after chemo to prevent mouth sore.
Good luck.
Kanjana
My doctor and I had planned for ASCT all along, did 4 Rev/Dex and another Rev. I went through the transplant with no problem, some other patients might some problems but that's depended on each individual. I had my transplanted on 11/12, now on remission and on Rev for maintenance.
Your husband is in good health overall so he should go through SCT with no problem. Remember to eat lots of ice during & after chemo to prevent mouth sore.
Good luck.
Kanjana
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Kanjana
Re: Is/was SCT in your treatment plan from the start?
Its important to note that the stem cell transplant can have some very difficult side effects like nasty mouth sores, major fatigue, nausea and diarrhea. You can also be left with long term neuropathy. I did a SCT last year and had minimal side effects but it was a tough few months. If I had it to do again, I'd do the treatment and go on maintenance afterwards with no SCT. Like was mentioned earlier, you can always do it later if you find during maintenance that your numbers are creeping up.
Although your husband is in good health you don't know what might happen after they inject that high dose chemo in him on that first day of the transplant.
Doesn't matter what decision you make, you always wonder if it was the right one. Good luck to you, Jerry.
Although your husband is in good health you don't know what might happen after they inject that high dose chemo in him on that first day of the transplant.
Doesn't matter what decision you make, you always wonder if it was the right one. Good luck to you, 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
Re: Is/was SCT in your treatment plan from the start?
I had planned on ASCT from the time that I started treatment. I did 8 rounds of Rev/Dex and then did the transplant. I had nausea for a couple of months post transplant and fatigue, but gradually bounced back. I went back to work full time 10 weeks after the transplant.
One of the reasons that I was interested in doing the transplant was to hopefully be able to go drug free for a time. At the time that I did the transplant, 1/10, maintenance treatment was just beginning to be the accepted post treatment regimen. I started maintenance with Revlimid at 100 days post transplant, but had a bad reaction so stopped it. I had almost 3 years without any medications other than Zometa for my bones every 6 weeks. That time without drugs was really valuable to me.
Whatever your husband decides he wants to do, don't look back and second guess your decision. Whatever decision is made will be the right decision.
Nancy in Phila
One of the reasons that I was interested in doing the transplant was to hopefully be able to go drug free for a time. At the time that I did the transplant, 1/10, maintenance treatment was just beginning to be the accepted post treatment regimen. I started maintenance with Revlimid at 100 days post transplant, but had a bad reaction so stopped it. I had almost 3 years without any medications other than Zometa for my bones every 6 weeks. That time without drugs was really valuable to me.
Whatever your husband decides he wants to do, don't look back and second guess your decision. Whatever decision is made will be the right decision.
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: Is/was SCT in your treatment plan from the start?
Thank you Kanjana, Mike, Jerry, and Nancy for your input re: SCT. I can see how this is a very personal decision.
Re: Is/was SCT in your treatment plan from the start?
My husband had SCT in his plan from the beginning. He reached a good status after 4 treatments and was able to do the SCT in December. We prepared in our heart and mind that it would be a hard process. In the end, it was much more tolerable than we originally thought. He made it through like a champ. There were about 3 days where he felt weak and a little nausea. No mouth sores, no hospitalization, no vomiting, etc. He is at about Day 45 post transplant.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Is/was SCT in your treatment plan from the start?
I had my stem cell transplant in May of 2012 and took at least 4 months to begin to come back. I was highly disappointed that my M spike after 100 days was 1.6 I fully expected it to be zero and need only a minimum maintenance dose of Revlimid but it ended up I was put on 15 mg Revlimid with the horrible dex combo in September 2012 and have been stable ever since at an average of a 0.6 M spike.
When I relapse down the road I am not sure I would select the SCT as the first treatment. I would consider another drug therapy first. I could probably get a SCT later, this all depending on my oncologists advice.
I had hoped for better results from the SCT.
When I relapse down the road I am not sure I would select the SCT as the first treatment. I would consider another drug therapy first. I could probably get a SCT later, this all depending on my oncologists advice.
I had hoped for better results from the SCT.
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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
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