I had my follow up for BMB results 2 days ago. My plasma was 8% but I was positive for t(4;14). I know this is a high risk abnormality, but I have read several articles which say it is much more common in SMM and multiple myeloma than MGUS. Is that true?
I also have read that the appearance of the t(4;14) is a sort of precipitating event to the progression of multiple myeloma. Has anyone else heard this?
Also I have been on steroids for autoimmune disease for greater than 10 years and my heme/onc seems to think the plasma is probably being masked/suppressed because of this and fully expects my plasma to be increased in 3 months because I am currently weaning off the prednisone. Any opinions on this?
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
Re: t(4;14) positive
I was diagnosed with high risk multiple myeloma in May 2011 (80 % plasma cells in my bone marrow and positive for 4:14 and 1q21). I had an autologous stem cell transplant in Sept 2011 after Velcade/Dex/Revlimid Induction. I went in to stringent complete remission at Day 50 after transplant, but RELAPSED 4 months later (50 % plasma cells in my bone marrow and still positive for 4:14 and 1q21). Went through 2 cycles of VD-PACE followed by 2nd autologous stem cell transplant with BEAM Induction in May 2012 with now less than 10 % plasma cells and continued 4:14 and 1q21. Getting Velcade/Dex and Vorinostat (Zolinza) now...and hoping I don't REALLY RELAPSE. Wishing I knew what others with 4:14 and 1q21 are doing..... jm
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Judy Malkiewicz - Name: Judy Malkiewicz
- When were you/they diagnosed?: 24 May 2011
- Age at diagnosis: 60
Re: t(4;14) positive
Hi Judy! Sorry to hear you have had such a rough go of it since diagnosis. Thank you so much for taking the time to respond to me! I
I guess I should have given a little more background when I posted. This is all very new to me and I am still trying to take it all in. My M-spike was found 6/2012 while doing some routine blood work for my rheumatologist for Lupus. Before that I knew nothing of monoclonal proteins, M-spikes,MGUS,SMM or multiple myeloma. Suffice it to say I am now getting a crash course!
Just when I thought I had a grip on it because my heme/ onco said this was probably related to my autoimmune disease, they threw me a monkey wrench and said not only is it a plasma cell dyscrasia (what?) it has this mutation thingy and that makes it high risk and usually hard to treat. Oh yeah they tell me relapse is almost certain with this mutation thingy! But not to worry, it's just MGUS right now they said. Well ok let's stop it from becoming multiple myeloma I said. Well we don't do that just yet they said. We just watch and wait for it to go to active disease with organ involvement. WHAT!!!!!! Gives a new meaning to the words ticking time-bomb!
Looking at all you have been through I wish I had some words of wisdom for you, but I am a baby at all of this. What I have been reading is that treatment for multiple myeloma improves everyday and pretty soon it will be like a chronic disease that waxes and wanes like diabetes or hypertension.
Good luck with your newest treatment plan and may God bless you and keep you in his arms always!
Angie
I guess I should have given a little more background when I posted. This is all very new to me and I am still trying to take it all in. My M-spike was found 6/2012 while doing some routine blood work for my rheumatologist for Lupus. Before that I knew nothing of monoclonal proteins, M-spikes,MGUS,SMM or multiple myeloma. Suffice it to say I am now getting a crash course!
Just when I thought I had a grip on it because my heme/ onco said this was probably related to my autoimmune disease, they threw me a monkey wrench and said not only is it a plasma cell dyscrasia (what?) it has this mutation thingy and that makes it high risk and usually hard to treat. Oh yeah they tell me relapse is almost certain with this mutation thingy! But not to worry, it's just MGUS right now they said. Well ok let's stop it from becoming multiple myeloma I said. Well we don't do that just yet they said. We just watch and wait for it to go to active disease with organ involvement. WHAT!!!!!! Gives a new meaning to the words ticking time-bomb!
Looking at all you have been through I wish I had some words of wisdom for you, but I am a baby at all of this. What I have been reading is that treatment for multiple myeloma improves everyday and pretty soon it will be like a chronic disease that waxes and wanes like diabetes or hypertension.
Good luck with your newest treatment plan and may God bless you and keep you in his arms always!
Angie
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angiebaldy - Name: angiebaldy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
- Age at diagnosis: 47
Re: t(4;14) positive
Angie, I'm sorry you are having so many questions and I hope they get answered for you. I look forward to hearing from others that have cytogenetic changes 4:14 and 1q21. My email address is rudi48@atcnet.net
I failed to mention that I'm feeling great right now (Day 92 after my 2nd ASCT).
Again, thanks for your comments. jm
I failed to mention that I'm feeling great right now (Day 92 after my 2nd ASCT).
Again, thanks for your comments. jm
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Judy Malkiewicz - Name: Judy Malkiewicz
- When were you/they diagnosed?: 24 May 2011
- Age at diagnosis: 60
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