My mother is Day +54 after an auto stem cell transplant (SCT). Today the doctor told her that her biopsy from before the transplant shows a gain of 1q, which she said is considered high risk. She suggests putting her on Velcade for her maintenance therapy.
Does anyone else have experience with this abnormality? At what point should we start looking for clinical trials for other drugs, like immunotherapies? Should we just stick with the Velcade for now, or should we be getting second and third opinions?
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Re: Maintenance options with 1q gain chromosome abnormality?
Hi Jennlc1
First off, let me clear that I'm not familiar with the particular abnormality (1Q) that you mention. I know enough to know that 1Q represents the first gene on the "q" (long) arm of the chromosome. Beyond that, I've never heard of it.
That being said, I have the deletion 17p abnormality, considered by some to be the highest risk abnormality, but none of them are good. Following my ASCT in July of 2013, my oncologist put me on a maintenance protocol of Velcade and dex - this has become a standard treatment protocol for del(17p) patients, but at the time, it was unusual.
Bottom line, it worked miraculously. I recently read a review of a newly completed clinical trial (can't remember if it was actually a "trial", or a retroactive study) that demonstrates that even in the initial treatment phase, the difference in longevity between VD vs. RVD, or a number of other combination therapies, was virtually identical.
To me, this is great news because the difference in side effects between VD vs. combos is much better!
Out of interest, what was your mother's initial diagnosis?
Aloha,
Daniel
First off, let me clear that I'm not familiar with the particular abnormality (1Q) that you mention. I know enough to know that 1Q represents the first gene on the "q" (long) arm of the chromosome. Beyond that, I've never heard of it.
That being said, I have the deletion 17p abnormality, considered by some to be the highest risk abnormality, but none of them are good. Following my ASCT in July of 2013, my oncologist put me on a maintenance protocol of Velcade and dex - this has become a standard treatment protocol for del(17p) patients, but at the time, it was unusual.
Bottom line, it worked miraculously. I recently read a review of a newly completed clinical trial (can't remember if it was actually a "trial", or a retroactive study) that demonstrates that even in the initial treatment phase, the difference in longevity between VD vs. RVD, or a number of other combination therapies, was virtually identical.
To me, this is great news because the difference in side effects between VD vs. combos is much better!
Out of interest, what was your mother's initial diagnosis?
Aloha,
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Maintenance options with 1q gain chromosome abnormality?
Dear Jennlc1,
You should google the mSMART risk stratification from the Mayo Clinic. It will tell you about what is high risk. I've not heard that 1q is high risk. However, as Daniel pointed out, the del(17p) is considered to be very high risk (I know, because I also have it, just like Daniel does).
In fact, Daniel, a question for you: Your maintenance of Velcade & dex has worked well. I was just put on Velcade (no dex) for my maintenance. My SCT was Feb 2015. How long have you been on Velcade maintenance?
You should google the mSMART risk stratification from the Mayo Clinic. It will tell you about what is high risk. I've not heard that 1q is high risk. However, as Daniel pointed out, the del(17p) is considered to be very high risk (I know, because I also have it, just like Daniel does).
In fact, Daniel, a question for you: Your maintenance of Velcade & dex has worked well. I was just put on Velcade (no dex) for my maintenance. My SCT was Feb 2015. How long have you been on Velcade maintenance?
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Maintenance options with 1q gain chromosome abnormality?
I too have the 1q abnormality. After having a stem cell transplant in October 2014, I began maintenance therapy in March consisting of Velcade subq once every other week with 12 mgs iv dex. I am also on 5 mg Revlimid on a 21-day cycle.
I do have GI and fatigue side effects presumably from the Revlimid, based upon what I have read about others' experiences. I was told by a myeloma specialist that I should continue this regimen for 3 years barring disease progression. At that point, if I remain in remission, we will re-assess the situation to determine next steps.
I do have GI and fatigue side effects presumably from the Revlimid, based upon what I have read about others' experiences. I was told by a myeloma specialist that I should continue this regimen for 3 years barring disease progression. At that point, if I remain in remission, we will re-assess the situation to determine next steps.
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