This week's poll is about the timing of stem cell transplants. Many myeloma patients undergo stem cell transplantation once they have responded to initial treatment. Others delay their stem cell transplant until they have relapsed? Some would prefer to never undergo stem cell transplantation. What timing did you choose?
A few clarifications:
First, this question is for readers who have been diagnosed with multiple myeloma (not smoldering or MGUS). If you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
Second, please answer based on the timing of your first stem cell transplant relative to when you were diagnosed with myeloma.
Third, if you have not yet had a stem cell transplant, please vote based on your current plan. For instance, if you are planning to undergo stem cell transplantation once you are in your first remission, please vote for early remission. If you are planning to wait until you relapse or until after you have tried several other drug-based options first, please vote for late transplant. If you are planning to completely avoid a stem cell transplant, please vote for no transplant. We realize that your plans may change.
As always, feel free to post comments, thoughts, or feedback in the space below.
Forums
Re: Weekly Poll - Early vs Late vs No Transplant
Thank you Beacon Staff for posting this poll!!! I have not yet started treatment (but most likely will in the next few months based on the evolution of my numbers) and a future SCT has been recommended by a myeloma specialist. I truly look forward to hearing everyone's responses as I am now faced with this timing dilemma (early, late, never).
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Weekly Poll - Early vs Late vs No Transplant
There isn't a category for me. Now 3 years since diagnosis. Started CTD treatment. In complete remission. Awaiting relapse before SCT. Keen to avoid one, but never say never!
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AliceNorth
Re: Weekly Poll - Early vs Late vs No Transplant
Gardengirl - We're glad to hear this poll will be really helpful to you.
AliceNorth - We can certainly understand your hope to delay or avoid a stem cell transplant. We'd recommend voting for your current plan. If you and your doctor have decided that the best plan would be stem cell transplantation after relapse, then vote for "late transplant." If your plan is to try to avoid stem cell transplantation, but you might change your mind at some point if nothing else is working, then vote for "no transplant."
AliceNorth - We can certainly understand your hope to delay or avoid a stem cell transplant. We'd recommend voting for your current plan. If you and your doctor have decided that the best plan would be stem cell transplantation after relapse, then vote for "late transplant." If your plan is to try to avoid stem cell transplantation, but you might change your mind at some point if nothing else is working, then vote for "no transplant."
Re: Weekly Poll - Early vs Late vs No Transplant
We have a reversation of her own Stem Cells in BMT Department at hospital in case we have to do an Auto SCT under some signs of relapse with a series of Chemotherapys, and BMT Doctors told me that she carried very less of CD 38 and other markers in multiple myeloma but Doctors strongly recommend to have an SCT, so far it is very successful treatment of VRD to stage IV of Extrameduluary Plasmacytoma in her organ without tumors and all blood works are good. Only do a maintenance therapy on Velcade more than year with very less side effects.
Doctors show articles that mentions it is a lot of very different results and risks of Auto and Allo SCT in life span. We keep an option to have a SCT, but maintenance therapy are OK, may be never have to do it. We did see some ALL or CLL patients have allo SCT. They had been not showing up any more since early 2013. This is a case: one young 21 ys girl of UC college student of US Taiwanese from LA carried ALL and had a SCT in USC, but if she did not have an SCT and might not survive too long either. It is really sad to her and their families. All difficulties and sufferings are parts of our life with no choice either.
Doctors show articles that mentions it is a lot of very different results and risks of Auto and Allo SCT in life span. We keep an option to have a SCT, but maintenance therapy are OK, may be never have to do it. We did see some ALL or CLL patients have allo SCT. They had been not showing up any more since early 2013. This is a case: one young 21 ys girl of UC college student of US Taiwanese from LA carried ALL and had a SCT in USC, but if she did not have an SCT and might not survive too long either. It is really sad to her and their families. All difficulties and sufferings are parts of our life with no choice either.
Last edited by chen5631867 on Wed Feb 19, 2014 10:46 pm, edited 1 time in total.
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chen5631867 - Name: George Chen
- Who do you know with myeloma?: My Spouse
- When were you/they diagnosed?: Feb. 25, 2011
- Age at diagnosis: 53
Re: Weekly Poll - Early vs Late vs No Transplant
I was 59 years old when I was diagnosed in 9/08 and had a autologous SCT in 2/09 at Mass General Hospital in Boston.
It was a treatment that I dreaded but, in retrospect, I am very happy that I went through with it. I was in complete remission for 4 years - no chemo during that time, just Zometa 4x yearly. A year ago I started on 25 mg Revlimid / 20 mg dexamethasone maintenance to combat the "numbers creep" my monthly blood/urine tests were showing. I still have enough stem cells on ice to do a second SCT and would do it in a heartbeat, even though it's less likely that I'll get as good a response as the first one.
The 3 weeks in isolation at the hospital wasn't so bad: really, really sore throat and a lot of fatigue and boredom.
It took me 8 weeks at home til I felt confident enough to drive, due to fatigue and muscle loss in arms and legs. But by the end of that summer I was bike riding, swimming and kayaking.
It was a treatment that I dreaded but, in retrospect, I am very happy that I went through with it. I was in complete remission for 4 years - no chemo during that time, just Zometa 4x yearly. A year ago I started on 25 mg Revlimid / 20 mg dexamethasone maintenance to combat the "numbers creep" my monthly blood/urine tests were showing. I still have enough stem cells on ice to do a second SCT and would do it in a heartbeat, even though it's less likely that I'll get as good a response as the first one.
The 3 weeks in isolation at the hospital wasn't so bad: really, really sore throat and a lot of fatigue and boredom.
It took me 8 weeks at home til I felt confident enough to drive, due to fatigue and muscle loss in arms and legs. But by the end of that summer I was bike riding, swimming and kayaking.
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Bev Baccelli
Re: Weekly Poll - Early vs Late vs No Transplant
20 months since diagnosis, one year since stem cell transplant. Had a difficult time with cDiff and toxic mega colon.
Otherwise slow but steady improvement in lab numbers.
Kidney and liver functions are still an issue.
Otherwise slow but steady improvement in lab numbers.
Kidney and liver functions are still an issue.
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Nestlake
Re: Weekly Poll - Early vs Late vs No Transplant
My husband was diagnosed with high-risk multiple myeloma last June when he was 51. He went through intial induction therapy and was in a very good partial remission afterwards. He went through an SCT this last December and is in a clinical trial, and it is still recovering from the SCT.
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MM Wife
Re: Weekly Poll - Early vs Late vs No Transplant
I was diagnosed at age 64, post agent orange exposure Vietnam. Did RVD treatment, good results. Five months later the gurus at Univ WA recommended SCT. Wow!
But now in remission and all of my numbers are perfect. Don't care to go through it again, but if things regress, will do so: yes: fatigue, very bad throat pain, muscle loss, etc. But now back to normal working 12 hour days.
Plan to go back to hiking, biking and kayaking this summer -- even backpacking.
But now in remission and all of my numbers are perfect. Don't care to go through it again, but if things regress, will do so: yes: fatigue, very bad throat pain, muscle loss, etc. But now back to normal working 12 hour days.
Plan to go back to hiking, biking and kayaking this summer -- even backpacking.
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julian
Re: Weekly Poll - Early vs Late vs No Transplant
I am really glad there are others out there that are in the same predicament that I am. I was diagnosed in Sept of 2013, at 63. I had an induction of Velcade and dex and as of my tests in Jan I am in complete remission, I think I start the stem cell collection process next week. I am really reluctant to do a ASCT as expense is going to be a real issue and with the drugs may be I can get by without the transplant until relapse. My husband doesn't agree. But I am leading toward going chemical free until relapse. Part of this problem is I am on gabapentin 2400 mg daily for my moderate -severe neuropathy in my feet. This kind of putting a kink in excersise and doing anything all day. I only have a 3-4 hour window for being on my feel. Would the
REV maintanence side effects worsen this or make it permanent? I don't know if I want to take the chance.
REV maintanence side effects worsen this or make it permanent? I don't know if I want to take the chance.
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molly may
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