Does anyone have information or experience regarding long term treatment for young (sub 50) multiple myeloma patients. Particularly in Australia.
I am 40 years old and am just about to finish 16 weeks of dexamethasone, Cytoxan (cyclophosphamide), and Velcade, and will be having my first autologous stem cell transplant (ASCT) in January.
While I am constantly being reminded by my doctors how lucky I am to be so young and fit, I cant help but wonder how being so young will affect things long term.
Forums
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Treatment for young multiple myeloma patients
This is a good question and unfortunately I don't have an answer on this either. Although I am in my early 50's I am also considered "young" for this disease. I too was told it was good to be young because I am stronger than someone in their 70's and have no other issues to complicate therapy.
When I was first diagnosed this year I read the average age was late 60's - 70's. I originally thought it would be better to get it at 75 years old because the treatments can carry you out 10 years putting you into the normal life expectancy. At age 50 that only puts me in the 60's so why is it better to be younger? Hopefully someone can shed some light on this but I will address it at my next visit to my multiple myeloma specialist in NYC.
By the way, I started treatment RVD yesterday and read 2 books last night/this morning. lol
When I was first diagnosed this year I read the average age was late 60's - 70's. I originally thought it would be better to get it at 75 years old because the treatments can carry you out 10 years putting you into the normal life expectancy. At age 50 that only puts me in the 60's so why is it better to be younger? Hopefully someone can shed some light on this but I will address it at my next visit to my multiple myeloma specialist in NYC.
By the way, I started treatment RVD yesterday and read 2 books last night/this morning. lol
Re: Treatment for young multiple myeloma patients
Hi, I was 39 when diagnosed with primary AL amyloidosis, which is related to multiple myeloma, then at 42 diagnosed with kappa multiple myeloma. Now completed just over one year of chemotherapy with a couple of different regimens. Looking to probably switch to maintenance therapy in the early spring.
I don't know much (anything) about multiple myeloma treatment in Australia. Though I can tell you that my myeloma specialist at Dana Farber tells me that younger patients tend to have longer median survivals than older patients. Right now, Dana Farber's median survival for people under 50 is 7-10 years from diagnosis. Not great, but not the worst either. However, that number is also constantly being pushed outward, longer, so it's a moving target in a good direction.
I already had an autologous transplant for my amyloidosis, so I am likely not going to repeat that as it probably won't help me any. After a very intense decision making process, I decided to pursue an allogeneic transplant, but I don't have a good match. So I wait and try to make the best of things in the meantime. Allo transplants are quite rare in multiple myeloma because the risk benefit profile is so slim. It really only makes sense in young patients, maybe under 55 or something like that. That's the only other real difference I can think of for young multiple myeloma patients.
Good luck sorting things out.
I don't know much (anything) about multiple myeloma treatment in Australia. Though I can tell you that my myeloma specialist at Dana Farber tells me that younger patients tend to have longer median survivals than older patients. Right now, Dana Farber's median survival for people under 50 is 7-10 years from diagnosis. Not great, but not the worst either. However, that number is also constantly being pushed outward, longer, so it's a moving target in a good direction.
I already had an autologous transplant for my amyloidosis, so I am likely not going to repeat that as it probably won't help me any. After a very intense decision making process, I decided to pursue an allogeneic transplant, but I don't have a good match. So I wait and try to make the best of things in the meantime. Allo transplants are quite rare in multiple myeloma because the risk benefit profile is so slim. It really only makes sense in young patients, maybe under 55 or something like that. That's the only other real difference I can think of for young multiple myeloma patients.
Good luck sorting things out.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Treatment for young multiple myeloma patients
Thanks, Tracy J.
It's so true it does seem like an ever moving target (in a good way) but it's also very hard to get a grasp on as this disease is so varied in each individual.
Those median survival figures for DF are very interesting. Do you know any figures for how many young patients they treat each year?
My issue is I think the sample size in Australia is firstly very small and also being such a large country with a relatively small population, there aren't many specialists that have treated any great number of younger patients, so in a way you kind of feel that they may be taking a one size fits all approach.
How did you handle your ASCT if you don't mind me asking?
It's so true it does seem like an ever moving target (in a good way) but it's also very hard to get a grasp on as this disease is so varied in each individual.
Those median survival figures for DF are very interesting. Do you know any figures for how many young patients they treat each year?
My issue is I think the sample size in Australia is firstly very small and also being such a large country with a relatively small population, there aren't many specialists that have treated any great number of younger patients, so in a way you kind of feel that they may be taking a one size fits all approach.
How did you handle your ASCT if you don't mind me asking?
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Treatment for young multiple myeloma patients
I had my autologous at Boston Medical Center, where there is a multidisciplinary specialty clinic for amyloidosis, including transplant. I passed with flying colors, in the sense that there were no remarkable complications along the road. But the experience was all-consuming for months. It took at least 6 months before I started to feel energetic again, and I was still noticing improvements a year later.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Treatment for young multiple myeloma patients
Hi Tracy J,
Sorry to hear you are still waiting on a donor match for your allo. Does your medical cover an international search? I also had no match locally but had 3 very good (doctor said as good as sibling donor) matches from Germany, which has a massive database.
Hope you come right soon.
Cheers,
Grant
Sorry to hear you are still waiting on a donor match for your allo. Does your medical cover an international search? I also had no match locally but had 3 very good (doctor said as good as sibling donor) matches from Germany, which has a massive database.
Hope you come right soon.
Cheers,
Grant
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: Treatment for young multiple myeloma patients
I was diagnosed at 43 in 2003 with lesions, 80% plasma cells in my very first bone marrow biopsy, and severe anemia (hemoglobin was below 7). 7 months of induction (thalidomide / dexamethasone) led to the first auto stem cell transplant (SCT) in 2004.
I had a very good response and was on a maintenance until relapse in 2009. Switched to Revlimid and did a second auto SCT in 2009. Was on Revlimid maintenance until another relapse early this year. Switched now to Velcade / dexamethasone this last May, and so far results seem good. Having my 15th bone marrow biopsy in 6 weeks to get a clear picture of where we're at now.
This has been the last 12 years for me and the treatment I took on. Youth allowed me to choose to be aggressive, I guess, and so far I'm still here.
My best wishes for you,
Allen
I had a very good response and was on a maintenance until relapse in 2009. Switched to Revlimid and did a second auto SCT in 2009. Was on Revlimid maintenance until another relapse early this year. Switched now to Velcade / dexamethasone this last May, and so far results seem good. Having my 15th bone marrow biopsy in 6 weeks to get a clear picture of where we're at now.
This has been the last 12 years for me and the treatment I took on. Youth allowed me to choose to be aggressive, I guess, and so far I'm still here.
My best wishes for you,
Allen
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: Treatment for young multiple myeloma patients
Hi Allen,
It looks like you have done amazing especially considering your start point.
Are you able to do a 3rd stem cell transplant? Any other ideas of what your options are?
12 years and still going strong.
It looks like you have done amazing especially considering your start point.
Are you able to do a 3rd stem cell transplant? Any other ideas of what your options are?
12 years and still going strong.
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Treatment for young multiple myeloma patients
Interestingly enough, no. My oncologist had me go to Stanford this spring and talk to them about the prospect of doing a third transplant, but the transplant board (not just the transplant doc I had assigned) ruled it out due to 'excess toxicity' from the chemo drugs.
Can't say I was disappointed actually. As far as options, it seems I'm in a 'use a drug until it stops working and move to the next' mode at this point.
While somehow I've missed the demise that I thought would have happened by now, I am all about living. I don't miss my treatments, but when I leave the oncologist's office every week now, I forget about 'em.
Allen
Can't say I was disappointed actually. As far as options, it seems I'm in a 'use a drug until it stops working and move to the next' mode at this point.
While somehow I've missed the demise that I thought would have happened by now, I am all about living. I don't miss my treatments, but when I leave the oncologist's office every week now, I forget about 'em.
Allen
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: Treatment for young multiple myeloma patients
Allen,
Are you IgG or IgA lambda or kappa? Just curious.
Thanks
Are you IgG or IgA lambda or kappa? Just curious.
Thanks
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