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SCT vs. ongoing maintenance - why recommended?
What makes a doctor or team more apt to recommend SCT [stem cell transplant] right away vs. ongoing maintenance? In reading the posts, I am wondering when it is better to go with SCT vs. just doing maintenance and delaying SCT. Is it risk factors, % bone marrow involvement, age, etc. Thoughts and feedback appreciated.
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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: SCT vs. ongoing maintenance - why recommended?
I obviously can't answer our question, but I can relate my experience. I did a treatment regimen of Velcade and prednisone which put me very near remission and then an AST a year after diagnoses. I have not been on any treatment the last 3 1/2 years.
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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: SCT vs. ongoing maintenance - why recommended?
Thanks Wayne K.
I am just wondering why some doctors say SCT immediately while for others they say to wait.
I am just wondering why some doctors say SCT immediately while for others they say to wait.
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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: SCT vs. ongoing maintenance - why recommended?
My doctor has relayed to me that he thinks SCT along with the high-dose chemotherapy will result in better chances killing the most myeloma cells. Especially when the high dose chemo about kills your bone marrow and then has a chance to regrow when your stem cells are reintroduced. Chances are that you may wind back where you started from, but it sounds like the benefits reaped from a successful procedure and recovery are a bit better than just maintenance alone.
Still, he says there is no official cure, and maintenance can still be likely afterwards, so I guess each person needs to make an informed decision that will suit him/her best based on personal scenario.
Still, he says there is no official cure, and maintenance can still be likely afterwards, so I guess each person needs to make an informed decision that will suit him/her best based on personal scenario.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: SCT vs. ongoing maintenance - why recommended?
The problem with answering this question is that there is no data in the Velcade/Revlimid era that will tell us whether or not "early" stem cell transplant is best. Trials have been done but the data analysis is ongoing. I generally recommend to patients that have acheived complete responses that the choice of transplant or continuing effective therapy is up to them. This sounds like a tremendous cop out but I present risks and benefits of each therapy and go from there.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: SCT vs. ongoing maintenance - why recommended?
I've gone about 8 years and counting without a SCT. Started RVD in Aug '12 and changed to once a week Velcade due to PN about a year ago. Then changed to Carfilizomib/Rev/Dex two months ago because I plateaued on RVD (once weekly Velcade). I'm at 0.35 after one cycle of carfilizomib [Kyprolis] and get my numbers drawn next week after second cycle of carflizomib. I have successfully avoided/not needed a SCT and hope to continue that trend with taking maintanence Revlimid only after i hit a complete remission.
Doc in NYC gave me two options of either complete remission on meds or complete remission on SCT. We obviously tried the meds first and are still trying. By Christmas or sooner maybe next week I should have my answer if i need SCT over this winter. By all accounts I accept the meds really well but im getting annoyed at the requirements of hospital visits twice weekly with carfilzomib and also just getting sick of taking all the meds. But i really want to be on the "new school" side which is to take everything into account and not necessarily treat me the same way everyone else has been treated since god knows when.
Put faith in your doctors and also the new meds that have come out are tremendous. Obviously I'm part of ongoing studies with regards to lengthening time of life. But by the time i need a transplant maybe a new medicine will have come out or it could be 10-12 years with multiple myeloma by that time. I'm young and resilient but in no rush to go thru SCT if current way of treating my disease is working which it is. I live a normal life and get to continue doing so either way. but in January it'll be 8 years and I wouldnt change anything on how I've been treated/watched if i had to do it over again.
I'm happy, heathly and an example that you DO NOT necessarily need a SCT right away to treat disease successfully.
Mark
Doc in NYC gave me two options of either complete remission on meds or complete remission on SCT. We obviously tried the meds first and are still trying. By Christmas or sooner maybe next week I should have my answer if i need SCT over this winter. By all accounts I accept the meds really well but im getting annoyed at the requirements of hospital visits twice weekly with carfilzomib and also just getting sick of taking all the meds. But i really want to be on the "new school" side which is to take everything into account and not necessarily treat me the same way everyone else has been treated since god knows when.
Put faith in your doctors and also the new meds that have come out are tremendous. Obviously I'm part of ongoing studies with regards to lengthening time of life. But by the time i need a transplant maybe a new medicine will have come out or it could be 10-12 years with multiple myeloma by that time. I'm young and resilient but in no rush to go thru SCT if current way of treating my disease is working which it is. I live a normal life and get to continue doing so either way. but in January it'll be 8 years and I wouldnt change anything on how I've been treated/watched if i had to do it over again.
I'm happy, heathly and an example that you DO NOT necessarily need a SCT right away to treat disease successfully.
Mark
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Barneasada - Name: Mark
- When were you/they diagnosed?: Jan 2007
- Age at diagnosis: 19
Re: SCT vs. ongoing maintenance - why recommended?
I did transplant 6 months after diagnosis, and have been off all meds since. (Transplant was June 2010). I'm happy with my choice, but now I have the benefit of hindsight. I get alot of side effects from most meds so I declined taking thalidomide maintenence when it was discussed after my transplant.
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Anonymous
Re: SCT vs. ongoing maintenance - why recommended?
In your post you say: "I'm happy with my choice, but now I have the benefit of hindsight." Could you explain what you mean about hindsight?
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: SCT vs. ongoing maintenance - why recommended?
Newbie here. I was diagnosed in 2006 with smoldering myeloma. In July of 07' it became active. I have been treated with Velcade, dex, Revlimid, cytoxin and various pain meds. For 3+ years I was in remission taking 5 mg of Revlimid. In October I received the news that my cancer had become active. My onc. increased my Revlimid dose to 10mg every day. I did this for 3 or 4 months with no results. So I was switched to a mix of cytoxin, dex, and a weekly shot in the arm/stomach of Velcade. This I have been doing for a little over a month.
At the time of the above visit my onc. concerns were, if he continued to treat without doing a SCT there may not be any viable stems cells to harvest because the Revlimid damages the good stem cells. I don't know if Velcade or the other drugs would cause an adverse affect or not. That is a question I will ask next week.
Anyway, he set a meeting with another onc. who specializes in SCT's. He concurred with my onc about the chance of not being able to harvest "viable" stem cells. So, now I am facing a SCT late winter or early spring. This is the one part of treatment I had hoped to avoid until nothing else worked. And now I am second guessing myself.
At the time of the above visit my onc. concerns were, if he continued to treat without doing a SCT there may not be any viable stems cells to harvest because the Revlimid damages the good stem cells. I don't know if Velcade or the other drugs would cause an adverse affect or not. That is a question I will ask next week.
Anyway, he set a meeting with another onc. who specializes in SCT's. He concurred with my onc about the chance of not being able to harvest "viable" stem cells. So, now I am facing a SCT late winter or early spring. This is the one part of treatment I had hoped to avoid until nothing else worked. And now I am second guessing myself.
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