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High Risk Myeloma Does any treatment/ chemo work?
In 4/10 my brother, 55, was diagnosed with high risk myeloma. Deletion of chromosome 13, plus translocation of 4:14. He's been on Velcade; had an unsuccessful auto. transplant at Mayo Clinic, then cytocyn,+ andromycin (spelling?), Revlimid, lenonimide, carfilzomib and more. All unsuccessful. Has anyone with high risk myeloma had success with any other treatment? I'd appreciate hearing from you. Sandy
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sandy100 - Name: sandra brooks
- Who do you know with myeloma?: brother
- When were you/they diagnosed?: 04/2010
- Age at diagnosis: 55
Re: High Risk Myeloma Does any treatment/ chemo work?
Hi Sandy,
I have had success with an allograft.
I dont know what my chromosomal mutations were/are as they never got sufficient cells to do the analysis (some of my bone marrow biopsies were dry taps). However I did have chemorefractory myeloma (vincristine, adriomycin, dexamethasone, cyclophosphamide, thalidomide, Velcade, melphalan). None of these agents put me into remission let alone stabilize the disease. I had a failed auto (June 2010), the myeloma decreased by 16% and within 2 months was back to where it was prior to the transplant. I had been told in Feb 2011 that there was no more treatment and that my life expectancy was approx 18 months.
In April 2011 I had a reduced intensity chemo mini allograft which has put me into remission (I do have graft vs host disease but I can live with it). Since May 2012 there has been no paraprotein (M spike) detected, between Feb and May a trace amount was detected. At present life is pretty good.
Do you know if you are match for your brother or if there are any other donors? All the best for your brother.
Libby
I have had success with an allograft.
I dont know what my chromosomal mutations were/are as they never got sufficient cells to do the analysis (some of my bone marrow biopsies were dry taps). However I did have chemorefractory myeloma (vincristine, adriomycin, dexamethasone, cyclophosphamide, thalidomide, Velcade, melphalan). None of these agents put me into remission let alone stabilize the disease. I had a failed auto (June 2010), the myeloma decreased by 16% and within 2 months was back to where it was prior to the transplant. I had been told in Feb 2011 that there was no more treatment and that my life expectancy was approx 18 months.
In April 2011 I had a reduced intensity chemo mini allograft which has put me into remission (I do have graft vs host disease but I can live with it). Since May 2012 there has been no paraprotein (M spike) detected, between Feb and May a trace amount was detected. At present life is pretty good.
Do you know if you are match for your brother or if there are any other donors? All the best for your brother.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: High Risk Myeloma Does any treatment/ chemo work?
This is a tough one. A lack of response to Kyprolis (carfilzomib) is particularly concerning. A clinical trial is certainly an option. Treanda (bendamustine) is another consideration. Please let me know if you want information on a trial that he may be eligible for at our institution.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: High Risk Myeloma Does any treatment/ chemo work?
Hi Sandy,
I have the same issues as your brother. I started treatment with Rev and Dex in Feb 2011. Great initial response which quickly faded but kept the M spike low enough to maintain the treatment. I understand this is pretty common with high risk disease. We just added Velcade to my treatment plan and we're hoping for a better response. My doctor mentioned the possibility of an allogeneic SCT for the first time last month. Hopefully, this is the beginning of finding an answer to high risk disease.
Kim
I have the same issues as your brother. I started treatment with Rev and Dex in Feb 2011. Great initial response which quickly faded but kept the M spike low enough to maintain the treatment. I understand this is pretty common with high risk disease. We just added Velcade to my treatment plan and we're hoping for a better response. My doctor mentioned the possibility of an allogeneic SCT for the first time last month. Hopefully, this is the beginning of finding an answer to high risk disease.
Kim
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kimincle - Name: Kim
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2010
- Age at diagnosis: 52
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