I was diagnosed at 64 and have t(4;14) and t(14;16). I chose not to have a SCT. Induction therapy was 8 rounds of Doxil (doxorubicin liposomal), dex, and Velcade. Went into remission after 8 months. Declared to have a stringent complete response a few months later when a bone marrow biopsy was done.
I have been in remission now for over a year a half and have been on maintenance of Velcade and dex. I breezed thru all treatment with manageable side effects. I am one of the fortunate ones.
Forums
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: What's your intermediate & high-risk myeloma experience?
Hi, I am still fairly new to this. I was diagnosed September 2013, so it's only been almost a year and a half. I am t(4;14) and, just before my transplant, told they also detected deletion p17. From the beginning, I was told I was high risk, but with the increased information on new drugs I could consider myself intermediate, but then deletion p17 was discovered and back to high risk.
My doctors recommended CyBorD treatment. I read where Velcade was a good choice for people with t (4:14). I had a stem cell transplant after 4 cycles of CyBorD. The transplant wasn't as bad as I thought it would be. My doctor has me on maintenance therapy for a minimum of two years. I was told to expect relapse in around two years, so it would seem as if I may not get a break from treatment.
My M-spike was undetectable in my first tests after transplant, Then 0.2 g/dL (2 g/L) and then 0.3. I hope this doesn't continue to be the trend. I feel good though. I handle treatment well and work full time.
I would also like to hear from longer term survivors with high risk factors. I haven't really seen any examples though. I hope we are going to be the generation of patients to routinely make it past 10 years.
Best of luck.
My doctors recommended CyBorD treatment. I read where Velcade was a good choice for people with t (4:14). I had a stem cell transplant after 4 cycles of CyBorD. The transplant wasn't as bad as I thought it would be. My doctor has me on maintenance therapy for a minimum of two years. I was told to expect relapse in around two years, so it would seem as if I may not get a break from treatment.
My M-spike was undetectable in my first tests after transplant, Then 0.2 g/dL (2 g/L) and then 0.3. I hope this doesn't continue to be the trend. I feel good though. I handle treatment well and work full time.
I would also like to hear from longer term survivors with high risk factors. I haven't really seen any examples though. I hope we are going to be the generation of patients to routinely make it past 10 years.
Best of luck.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: What's your intermediate & high-risk myeloma experience?
I was diagnosed with myeloma in July 2008, after being followed for MGUS with elevated IgM since 1999. Interestingly, my myeloma itself is all lambda light chain type.
At diagnosis of the myeloma, I was found to have t(14;16) and was deemed high risk. I was part of a clinical study for 4 cycles of CyBorD and was in biochemical remission after 2 cycles. I wanted to do an ASCT, although my myeloma specialist wasn't so sure, because of my high risk status. However, I prevailed. I was originally scheduled for the ASCT in November 2008, but it was postponed because pre-tests prior to the ASCT indicated an issue with one of the arteries of my heart likely secondary to the bortezomib (Velcade). I ended up having to have a stent placed and a month's recovery on Plavix. I finally had the transplant on February 25, 2009 - so I am approaching my 6 year anniversary.
After my ASCT, I was put on maintenance, and took Revlimid only, from July 2009 to July 2012. I was taken off the Revlimid because I had been experiencing a number of bronchial infections, plus there was the whole issue of secondary cancers in Revlimid users.
I had a bone marrow biopsy in October 2012 (I had not had one since 2009). It came back with an indication of minimal residual disease negative. I have continued to be in complete remission since that time and have not been on any treatment since July 2012.
So there are some "long-termers" out here who do have high-risk disease. Hope this info has been helpful!
At diagnosis of the myeloma, I was found to have t(14;16) and was deemed high risk. I was part of a clinical study for 4 cycles of CyBorD and was in biochemical remission after 2 cycles. I wanted to do an ASCT, although my myeloma specialist wasn't so sure, because of my high risk status. However, I prevailed. I was originally scheduled for the ASCT in November 2008, but it was postponed because pre-tests prior to the ASCT indicated an issue with one of the arteries of my heart likely secondary to the bortezomib (Velcade). I ended up having to have a stent placed and a month's recovery on Plavix. I finally had the transplant on February 25, 2009 - so I am approaching my 6 year anniversary.
After my ASCT, I was put on maintenance, and took Revlimid only, from July 2009 to July 2012. I was taken off the Revlimid because I had been experiencing a number of bronchial infections, plus there was the whole issue of secondary cancers in Revlimid users.
I had a bone marrow biopsy in October 2012 (I had not had one since 2009). It came back with an indication of minimal residual disease negative. I have continued to be in complete remission since that time and have not been on any treatment since July 2012.
So there are some "long-termers" out here who do have high-risk disease. Hope this info has been helpful!
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DnaDocAZ
Re: What's your intermediate & high-risk myeloma experience?
DnaDocAZ, Your post is terrific -- not because it makes things easier for most high risk patients, but because you are so, so fortunate. Thank you for sharing.
Re: What's your intermediate & high-risk myeloma experience?
This is a great thread! 
mrozdav, thank you you for your kind words about my mother. I agree that she is remarkable in many ways.
Mom has almost completed her first round. The last Kyprolis infusions were given Thursday and Friday, and she will take her final Pomalyst this Wednesday. Her local oncologist should be able to tell her how her IgA is looking tomorrow.
She also got word from Mayo. She is due down in Rochester March 10. They won't do the transplant right then, of course. She has multiple appointments with everyone from the cardiologist to the dentist to the dietitian. Then four days of Neupogen followed by a second harvest and then the SCT.
Her doctor is very insistent on doing this second SCT ASAP. I do have to admit that I'm a little concerned about if one round of Kyprolis / Pomalyst / dex will put her into a good remission.
Really enjoying hearing everyone's high risk stories.
mrozdav, thank you you for your kind words about my mother. I agree that she is remarkable in many ways.
Mom has almost completed her first round. The last Kyprolis infusions were given Thursday and Friday, and she will take her final Pomalyst this Wednesday. Her local oncologist should be able to tell her how her IgA is looking tomorrow.
She also got word from Mayo. She is due down in Rochester March 10. They won't do the transplant right then, of course. She has multiple appointments with everyone from the cardiologist to the dentist to the dietitian. Then four days of Neupogen followed by a second harvest and then the SCT.
Her doctor is very insistent on doing this second SCT ASAP. I do have to admit that I'm a little concerned about if one round of Kyprolis / Pomalyst / dex will put her into a good remission.
Really enjoying hearing everyone's high risk stories.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
15 posts
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