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Diagnosed high risk? Had stem cell transplant (SCT)?
Were you diagnosed as high risk? Did you have a SCT? If so, how are you doing 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: Diagnosed high risk? Had stem cell transplant (SCT)?
I don't fully understand the "high risk" exactly. I have Bence Jones and had my SCT 12 months after my diagnosis. I'm now 3yrs and 9 months away. I'm just starting to show a rise in my Lambda light chains.
The doesn't seem to be any standard for the effectiveness of a SCT.
The doesn't seem to be any standard for the effectiveness of a SCT.
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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: Diagnosed high risk? Had stem cell transplant (SCT)?
When I state "high risk" category - I am referring to the genetic abnormalities. I am not 100% sure how true this is, but I was told that "high risk" multiple myeloma patients usually relapse much sooner than others.
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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: Diagnosed high risk? Had stem cell transplant (SCT)?
My wife is considered high risk due to detection of both the del(17p) and t(4;14) genetic anomalies in bone marrow plasma cells.
Dx 9/2012, induction Vd [ Velcade+dex] 3 cycles and RVd [Revlimid+Velcade+dex] 2 cycles, autoSCT 2/2013. Did not achieve CR, but M spike went from 3.33 g/dL at dx to 0.5 g/dL post-SCT and BMPC went from 60% to 5%. Very little change from before SCT to after.
Since then, mostly stable with CyBorD maintenance (1.3 g/m^2 bortezomib [Velcade], 400 mg cyclophosphamide [Cytoxan], 20 mg dexamethasone, all once/week, every week).
In the last two months, there has been a slight increase in M spike and in other indicators (LDH, ESR). If this continues, therapy will be changed.
We are actively seeking expert opinions on the best options, including clinical trials.
-- Larry
Dx 9/2012, induction Vd [ Velcade+dex] 3 cycles and RVd [Revlimid+Velcade+dex] 2 cycles, autoSCT 2/2013. Did not achieve CR, but M spike went from 3.33 g/dL at dx to 0.5 g/dL post-SCT and BMPC went from 60% to 5%. Very little change from before SCT to after.
Since then, mostly stable with CyBorD maintenance (1.3 g/m^2 bortezomib [Velcade], 400 mg cyclophosphamide [Cytoxan], 20 mg dexamethasone, all once/week, every week).
In the last two months, there has been a slight increase in M spike and in other indicators (LDH, ESR). If this continues, therapy will be changed.
We are actively seeking expert opinions on the best options, including clinical trials.
-- Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
Re: Diagnosed high risk? Had stem cell transplant (SCT)?
Dear Larry,
At this point, I think a pomalidomide (pomalyst)-based approach would make a lot of sense, either off study or on a study. Off study, I would favor carfilzomib, pomalidomide and dexamethasone. On study, there are several pomalidomide-based approaches in development that would be of interest, including pomalidomide-ixazomib-dexamethasone. Pom-dex-CD38 antibody approaches are also being considered but I am not sure if any have opened at this point. A different CD38 antibody based regimen would also be an attractive option, including the lenalidomide-dex-daratumumab study (I believe that is open at Dana Farber).
Let us know if you have other questions. Good luck!
Pete V.
At this point, I think a pomalidomide (pomalyst)-based approach would make a lot of sense, either off study or on a study. Off study, I would favor carfilzomib, pomalidomide and dexamethasone. On study, there are several pomalidomide-based approaches in development that would be of interest, including pomalidomide-ixazomib-dexamethasone. Pom-dex-CD38 antibody approaches are also being considered but I am not sure if any have opened at this point. A different CD38 antibody based regimen would also be an attractive option, including the lenalidomide-dex-daratumumab study (I believe that is open at Dana Farber).
Let us know if you have other questions. Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Diagnosed high risk? Had stem cell transplant (SCT)?
LadyLib,
I am considered high-risk due to a t(4:14) translocation, although some might say intermediate-risk now. There was initial concern about response to treatment and how long things could last, but I have been blessed and responded well. It has been about 2-1/2 years post-transplant, and about 3 years after my initial diagnosis, and I am still in sCR. (Not to inundate you with details, but RVD induction, auto-SCT, RVD consolidation, and presently on RV maintenance.)
Yes, statistically speaking, “high-risk” patients do not respond as well and responses do not last as long. That said, we are all individuals and not statistics, and we all respond differently. In my instance, I responded well and seem to be maintaining that response, so I can breathe a little easier. (I admit I was initially quite worried prior to treatment knowing my genetic markers.) There are many treatment options out there, and transplant is only one of them, so there is a lot of hope for patients regardless of cytogenics.
Wishing you and your husband well,
Russ
I am considered high-risk due to a t(4:14) translocation, although some might say intermediate-risk now. There was initial concern about response to treatment and how long things could last, but I have been blessed and responded well. It has been about 2-1/2 years post-transplant, and about 3 years after my initial diagnosis, and I am still in sCR. (Not to inundate you with details, but RVD induction, auto-SCT, RVD consolidation, and presently on RV maintenance.)
Yes, statistically speaking, “high-risk” patients do not respond as well and responses do not last as long. That said, we are all individuals and not statistics, and we all respond differently. In my instance, I responded well and seem to be maintaining that response, so I can breathe a little easier. (I admit I was initially quite worried prior to treatment knowing my genetic markers.) There are many treatment options out there, and transplant is only one of them, so there is a lot of hope for patients regardless of cytogenics.
Wishing you and your husband well,
Russ
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Russ - Name: Russ
- Who do you know with myeloma?: Me, Myself, & I (and a few others)
- When were you/they diagnosed?: February 2011
- Age at diagnosis: 41
6 posts
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