I am wondering what the experiences have been for those who were diagnosed as high risk, but have had stem cell transplant.
How have you been post transplant?
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Moderator's note:
For the current consensus definition of high-risk myeloma (and also low-risk and standard-risk),, see the recent Beacon article "Experts Publish Consensus Risk Classification For Multiple Myeloma"
For the Beacon's recent news and opinion articles related to high-risk myeloma, see the associated topic ("tag") page: high-risk multiple myeloma.
Forums
8 posts
• Page 1 of 1
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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: High-risk myeloma - post transplant experience?
Not sure what you consider high risk but I have the del13 which my doc says indicates a poor response. I did respond to initial therapy of RVD and had SCT in Jan. About 8 months post SCT my numbers started to climb even with R maintenance. Very disappointed. Working up a plan with the doc as to our next treatment plan. Good luck to you! Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: High-risk myeloma - post transplant experience?
Hi LadyLib,
My myeloma was not classified by cytogenetics - there was always a problem with the cells so I don't know if it was high risk. It was however chemorefractory, essentially the drugs that were used to treat it would not work after the 3rd cycle. Velcade is the "newest" drug I have used (haven't needed to use any newer ones as I am currently in remission due to an allograft). I am sorry to say that my SCT with high dose melphalan hardly put a dint in the myeloma - only wiped out 16% of it (based on paraprotein levels) and within 2 months it was growing again. It took me (not the myeloma) ~6 months to recover. But the important thing is I did recover (maybe not back to where I was prior to myeloma) and have continued to get better. My daughter challenged me to a swimming race a couple of days ago - I wouldn't have thought that was possible 3 years ago.
All the best,
Libby
My myeloma was not classified by cytogenetics - there was always a problem with the cells so I don't know if it was high risk. It was however chemorefractory, essentially the drugs that were used to treat it would not work after the 3rd cycle. Velcade is the "newest" drug I have used (haven't needed to use any newer ones as I am currently in remission due to an allograft). I am sorry to say that my SCT with high dose melphalan hardly put a dint in the myeloma - only wiped out 16% of it (based on paraprotein levels) and within 2 months it was growing again. It took me (not the myeloma) ~6 months to recover. But the important thing is I did recover (maybe not back to where I was prior to myeloma) and have continued to get better. My daughter challenged me to a swimming race a couple of days ago - I wouldn't have thought that was possible 3 years ago.
All the best,
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 - post transplant experience?
Hi Ladylib,
I´m high-risk according to del17p (20% of cells at diagnosis), GEP80 high-risk and a high proliferation index.
I was diagnosed in august 2010 with atypical symptoms (fluctuating low grade fever and nausea). I started induction treatment with thalidomide, cyclophosphamide and prednisolone one month later. It didn´t lower my light chain numbers so we switched to Velcade, cyclophosphamide and prednisolone. It worked very well and I reached a VGPR before my autologous transplant in Dec 2010. After transplant I recovered quickly but I was not in CR. After 6 months I started maintenance treatment with Velcade. A year after starting maintenance I started to relapse and my numbers went up rather quickly. I started treatment with Revlimid, cyclophosphamide and dex and also a few shots of Velcade SQ (just 2 because of PN). It lowered my number to a VGPR and I went through an allogeneic transplant in September 2012. Unfortunately I didn´t reach CR this time either. I had three escalating doses of DLI during spring 2013 that lowered my numbers (numbers are very low but still elevated) but the effect was short-lived. Now I am on Revlimid-maintenance since July. Also received an additional DLI in October.
So all in all I seem to be a typical high-risk patient; a bit difficult to treat.
I just posted a comment on ASH abstract nr 767 that might be interesting to you. It seems a double autologous transplant versus a single might have an excellent outcome in some circumstances for high-risk patients.
Best of luck
/Åsa
I´m high-risk according to del17p (20% of cells at diagnosis), GEP80 high-risk and a high proliferation index.
I was diagnosed in august 2010 with atypical symptoms (fluctuating low grade fever and nausea). I started induction treatment with thalidomide, cyclophosphamide and prednisolone one month later. It didn´t lower my light chain numbers so we switched to Velcade, cyclophosphamide and prednisolone. It worked very well and I reached a VGPR before my autologous transplant in Dec 2010. After transplant I recovered quickly but I was not in CR. After 6 months I started maintenance treatment with Velcade. A year after starting maintenance I started to relapse and my numbers went up rather quickly. I started treatment with Revlimid, cyclophosphamide and dex and also a few shots of Velcade SQ (just 2 because of PN). It lowered my number to a VGPR and I went through an allogeneic transplant in September 2012. Unfortunately I didn´t reach CR this time either. I had three escalating doses of DLI during spring 2013 that lowered my numbers (numbers are very low but still elevated) but the effect was short-lived. Now I am on Revlimid-maintenance since July. Also received an additional DLI in October.
So all in all I seem to be a typical high-risk patient; a bit difficult to treat.
I just posted a comment on ASH abstract nr 767 that might be interesting to you. It seems a double autologous transplant versus a single might have an excellent outcome in some circumstances for high-risk patients.
Best of luck
/Åsa
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asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: High-risk myeloma - post transplant experience?
My multiple myeloma is Bence Jones and I have been is remission for over 3 years now. I'm starting to show a slight increase in my light chains and the decrease in my ratio.
I'm thankful for what I've had and if the disease is once again coming back I now have the advantage of regular testing and much better management.
I'm thankful for what I've had and if the disease is once again coming back I now have the advantage of regular testing and much better management.
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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: High-risk myeloma - post transplant experience?
My wife is 14 months post diagnosis and 9 months post autoSCT. She is considered high risk due to having both del(17p) and t(4;14) by FISH.
Induction with Vd for 3 cycles and RVd for 2 cycles produced VGPR, with M protein going from 3.3 g/dl to 0.5 g/dl and bone marrow plasma cells going from 60% to 5%. Auto SCT produced hardly any change in these numbers. Post-SCT therapy started as Revlimid maintenance at 10 mg daily for 6 weeks, but then became more aggressive in an attempt to achieve CR. Used Vd (once per week for 2 of 3 weeks) for two cycles, then added cyclophosphamide and switched to every week (1.3 mg/kg Velcade, 400 mg Cytoxin, 20 mg dexamethsone weekly). So far none of this has had any effect, with M protein remaining stable at 0.5 g/dl the whole time. Fortunately, all of this has been well tolerated with minimal side effects.
I have just run across a new paper that reports a small retrospective study targeting high-risk multiple myeloma showing that RVD post autoSCT is very effective, with 3 year OS at 93% and no difference between those with and without del(17p):
A K Nooka, J L Kaufman, S Muppidi, A Langston, L T Heffner, C Gleason, D Casbourne, Debra Saxe, L H Boise and S Lonial,
"Consolidation and maintenance therapy with lenalidomide, bortezomib, dexamethasone (RVD) in high-risk myeloma patients"
Leukemia (13 November 2013) | doi:10.1038/leu.2013.335
Abstract: http://www.nature.com/leu/journal/vaop/naam/abs/leu2013335a.html
Extended summary: https://myelomabeacon.org/news/2013/11/26/rvd-consolidation-maintenance-high-risk-multiple-myeloma/
Best wishes,
Larry
Induction with Vd for 3 cycles and RVd for 2 cycles produced VGPR, with M protein going from 3.3 g/dl to 0.5 g/dl and bone marrow plasma cells going from 60% to 5%. Auto SCT produced hardly any change in these numbers. Post-SCT therapy started as Revlimid maintenance at 10 mg daily for 6 weeks, but then became more aggressive in an attempt to achieve CR. Used Vd (once per week for 2 of 3 weeks) for two cycles, then added cyclophosphamide and switched to every week (1.3 mg/kg Velcade, 400 mg Cytoxin, 20 mg dexamethsone weekly). So far none of this has had any effect, with M protein remaining stable at 0.5 g/dl the whole time. Fortunately, all of this has been well tolerated with minimal side effects.
I have just run across a new paper that reports a small retrospective study targeting high-risk multiple myeloma showing that RVD post autoSCT is very effective, with 3 year OS at 93% and no difference between those with and without del(17p):
A K Nooka, J L Kaufman, S Muppidi, A Langston, L T Heffner, C Gleason, D Casbourne, Debra Saxe, L H Boise and S Lonial,
"Consolidation and maintenance therapy with lenalidomide, bortezomib, dexamethasone (RVD) in high-risk myeloma patients"
Leukemia (13 November 2013) | doi:10.1038/leu.2013.335
Abstract: http://www.nature.com/leu/journal/vaop/naam/abs/leu2013335a.html
Extended summary: https://myelomabeacon.org/news/2013/11/26/rvd-consolidation-maintenance-high-risk-multiple-myeloma/
Best wishes,
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: High-risk myeloma - post transplant experience?
Lady Lib,
My husband is high risk due to the 17p deletion. His transplant was 2 years ago. After a few months of recovery, he feels great. He gets a little more fatigued than pre-diagnosis, but that's it. He's on Revlimid & Velcade. He has a measurable m-spike, but no other markers of active disease. His transplant doctor is pleased with how he's doing, and so are we.
My husband is high risk due to the 17p deletion. His transplant was 2 years ago. After a few months of recovery, he feels great. He gets a little more fatigued than pre-diagnosis, but that's it. He's on Revlimid & Velcade. He has a measurable m-spike, but no other markers of active disease. His transplant doctor is pleased with how he's doing, and so are we.
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rum&ting
Re: High-risk myeloma - post transplant experience?
Thank you all for the feedback.
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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
8 posts
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