Most of what I read on forums it seems that a lot are higher risk and diagnosed with lots of other issues.
My husband was diagnosed with IgG kappa stage 1 with 2 lesions on his ribs and possibly another small lesion on his spine. He has responded well to his induction therapy (Velcade/dex) but had emergency surgery for ruptured colon after Cytoxan (pre stem cell harvest) we did get the harvest -- enough for 2 transplants -- but have decided to not go ahead with a stem cell transplant (SCT) yet or go on any maintenance so that he can have a rest from treatment.
Are there any cases of people who have had just induction therapy (no stem cell transplant) and stayed in a CR or SCR for a long period of time? Or is it likely that because of the quick response to Velcade he may relapse very soon?
I am just curious to see if there are any people who have not had long term treatment who have been stable after getting their numbers down without completing the treatment regimen with SCT.
Forums
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: Low risk multiple myeloma & no SCT with long-term remission?
My husband was 42 at time of diagnosis in early 2011. His case was severe myeloma -- stage 3 with a lot of bone damage -- and he had to do 5 days of plasmapheresis to save his kidneys. He achieved full remission without a transplant via Revlimid, Velcade and dexamathasone in just 6 short months and continues to be in remission with no signs of it trying to sneak back up. His bones are permanently damaged but his kidneys are fine now.
He still receives weekly injections of Velcade and will continue to as long as he tolerates it but he's been very blessed to have responded so well in the condition he was in.
He still receives weekly injections of Velcade and will continue to as long as he tolerates it but he's been very blessed to have responded so well in the condition he was in.
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sobrien
Re: Low risk multiple myeloma & no SCT with long-term remission?
I was diagnosed in September of 2011 at age 64 with stage III. Underwent treatment with Velcade, Revlimid, and dex and obtained a complete response after 4 treatments. Stem cell collection successful for two transplants. Decided not to have transplants until I have a recurrence. Started with several bone lesions but have had several Zometa injections and no further lesions at this time.
Am on a 10 mg 21 day cycle of Revlimid for maintenance. It's been 17 months with no recurrence. I unfortunately also have prostate cancer and just completed a 40 treatment radiation therapy. There is some question if the original lesions were due to multiple myeloma or prostate. My hope is that the prostate cancer is confined to the gland and the radiation therapy will be successful.
I do not plan to have a transplant unless or until none of the new drugs control the multiple myeloma. I am hoping for at least a 5 year successful maintenance cycle with Revlimid. I don't have any of the genetic markers so it is a good possibility. While it has been only 17 months, so far so good.
Am on a 10 mg 21 day cycle of Revlimid for maintenance. It's been 17 months with no recurrence. I unfortunately also have prostate cancer and just completed a 40 treatment radiation therapy. There is some question if the original lesions were due to multiple myeloma or prostate. My hope is that the prostate cancer is confined to the gland and the radiation therapy will be successful.
I do not plan to have a transplant unless or until none of the new drugs control the multiple myeloma. I am hoping for at least a 5 year successful maintenance cycle with Revlimid. I don't have any of the genetic markers so it is a good possibility. While it has been only 17 months, so far so good.
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Kday
Re: Low risk multiple myeloma & no SCT with long-term remission?
Hi Ulrika,
I have IgG kappa myeloma and have been in remission since 2006. I was diagnosed in 2005 and treated with cyclophosphamide (CVAD) chemotherapy followed by thalidomide. I haven't had a stem cell transplant or been treated with Velcade or Revlimid and, apart from bisphosphonates, I haven't had any myeloma treatment since June 2006.
As to stage of treatment at diagnosis, I wasn't told, but I did have extensive bone damage which has proved to be permanent and causes me a lot of problems. My kidneys were not affected. I was diagnosed at age 55.
I don't know why I've remained in remission whilst others have had recurrent relapses, but I am optimistic for the future. I wish you and your husband a long period of remission in which you will be able to lead a full and enjoyable life.
I have IgG kappa myeloma and have been in remission since 2006. I was diagnosed in 2005 and treated with cyclophosphamide (CVAD) chemotherapy followed by thalidomide. I haven't had a stem cell transplant or been treated with Velcade or Revlimid and, apart from bisphosphonates, I haven't had any myeloma treatment since June 2006.
As to stage of treatment at diagnosis, I wasn't told, but I did have extensive bone damage which has proved to be permanent and causes me a lot of problems. My kidneys were not affected. I was diagnosed at age 55.
I don't know why I've remained in remission whilst others have had recurrent relapses, but I am optimistic for the future. I wish you and your husband a long period of remission in which you will be able to lead a full and enjoyable life.
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Dorothy
Re: Low risk multiple myeloma & no SCT with long-term remission?
Don't know any thing about low or high risk? All I can tell you is I only received treatment with thalidomide & dex in 2004 and received nothing more. My testing schedule has been moved out to every 6 months. No stem cell transplant and never had a stem cell collection.
My multiple myeloma tests are ok but still show some evidence of myeloma. Kidneys are not the best but still keeping my urine flowing. Lots of back problems and I am 4 inches [10 cm] shorter than in my prime. I did find of interest Kday's prostate cancer as I too had an occurence of that. NG
My multiple myeloma tests are ok but still show some evidence of myeloma. Kidneys are not the best but still keeping my urine flowing. Lots of back problems and I am 4 inches [10 cm] shorter than in my prime. I did find of interest Kday's prostate cancer as I too had an occurence of that. NG
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
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