Hi, I was just diagnosed on July 25.
My question is: Does anyone go on to live a normal life expectancy with multiple myeloma. Like 20-30 years? Anyone know of anyone?
It sounds so unattainable.
Forums
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Twenty years is quite rare, but yes, there are those who have.
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Hi,
It will be 27 years for me in November. In fact I was recently having dinner with my doctor in Little Rock and reminded him that in 2 years I will have been alive longer since my diagnosis than before it.
I was given 6 months to live in 1987 because I also have amyloidosis.
Dan
It will be 27 years for me in November. In fact I was recently having dinner with my doctor in Little Rock and reminded him that in 2 years I will have been alive longer since my diagnosis than before it.
I was given 6 months to live in 1987 because I also have amyloidosis.
Dan
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Dan in Phoenix
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Thank you Dan in Phoenix ! 27 years is such good news.
I was diagnosed with multiple myeloma stage 3 in November, 2012, and I am now in VGPR after an autologous stem cell transplant (ASCT). I am 45, and reading such testimonies is really helping.
Please give us more of them!
I was diagnosed with multiple myeloma stage 3 in November, 2012, and I am now in VGPR after an autologous stem cell transplant (ASCT). I am 45, and reading such testimonies is really helping.
Please give us more of them!
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Hi Dan
Do you mind telling us which immunoglobulin type you are?
Alice
Do you mind telling us which immunoglobulin type you are?
Alice
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AliceNorth
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Hi Alice,
I am IgG kappa isotype, which is unusual for amyloidosis, where most are lambda type.
Thanks,
Dan
I am IgG kappa isotype, which is unusual for amyloidosis, where most are lambda type.
Thanks,
Dan
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Dan in Phoenix
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Thanks Dan. I have amyloidosis and myeloma too. I am IgA lambda. I must admit that I haven't been enjoying the recent flurry of various posts focussing on IgA and whether it is more aggressive.
I've been in CR for over 3 years, but my last bloods (8 weeks ago) showed a trace of IgA lambda by IFE. Light chains were normal (in fact, kappa was higher than lambda), no BJP and everything else normal. I'll be tested again next week - doctor said the reading could possibly be transient.
I guess what I'm trying to say is that I was hoping you would say you are IgA lambda
It's amazing that you're doing so well!
I've been in CR for over 3 years, but my last bloods (8 weeks ago) showed a trace of IgA lambda by IFE. Light chains were normal (in fact, kappa was higher than lambda), no BJP and everything else normal. I'll be tested again next week - doctor said the reading could possibly be transient.
I guess what I'm trying to say is that I was hoping you would say you are IgA lambda
It's amazing that you're doing so well!
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AliceNorth
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Great news for Dan. Congratulations. The answer to whether patients can live for a long time is "yes."
The article below from the Spanish myeloma group suggests that those patients who are in complete remission 11 years after autologous transplant might be cured. If you look at this article carefully though, you will note that some patients live a long time (15-20) without have a complete remission.
My best wishes to you. You have found a great resource for information and support with The Myeloma Beacon.
J Martinez-Lopez et al, "Long-term prognostic significance of response in multiple myeloma after stem cell transplantation," Blood, July 21, 2011;118(3):529-34 (full text pdf)
Abstract
For establishing the true effect of different response categories in patients with multiple myeloma (multiple myeloma) treated with autologous stem cell transplantation, we evaluated, after a median follow-up of 153 months, 344 patients with multiple myeloma who received a transplant between 1989 and 1998. Overall survival (OS) at 12 years was 35% in complete response (CR) patients, 22% in near complete response (nCR), 16% in very good partial response (VGPR), and 16% in partial response (PR) groups. Significant differences in OS and progression-free survival were found between CR and nCR groups (P = .01 and P = .002, respectively), between CR and VGPR groups (P = .0001 and P = .003), or between CR and PR groups (P = .003 and P = < 10(-5)); no differences were observed between the nCR and VGPR groups (P = .2 and P = .9) or between these groups and the PR group (P = .1 and P = .8). A landmark study found a plateau phase in OS after 11 years; 35% patients in the CR group and 11% in the nCR+VGPR+PR group are alive at 17 years; 2 cases had relapsed in the nCR+VGPR+PR group. In conclusion, multiple myeloma achieving CR after autologous stem cell transplantation is a central prognostic factor. The relapse rate is low in patients with > 11 years of follow-up, possibly signifying a cure for patients in CR.
The article below from the Spanish myeloma group suggests that those patients who are in complete remission 11 years after autologous transplant might be cured. If you look at this article carefully though, you will note that some patients live a long time (15-20) without have a complete remission.
My best wishes to you. You have found a great resource for information and support with The Myeloma Beacon.
J Martinez-Lopez et al, "Long-term prognostic significance of response in multiple myeloma after stem cell transplantation," Blood, July 21, 2011;118(3):529-34 (full text pdf)
Abstract
For establishing the true effect of different response categories in patients with multiple myeloma (multiple myeloma) treated with autologous stem cell transplantation, we evaluated, after a median follow-up of 153 months, 344 patients with multiple myeloma who received a transplant between 1989 and 1998. Overall survival (OS) at 12 years was 35% in complete response (CR) patients, 22% in near complete response (nCR), 16% in very good partial response (VGPR), and 16% in partial response (PR) groups. Significant differences in OS and progression-free survival were found between CR and nCR groups (P = .01 and P = .002, respectively), between CR and VGPR groups (P = .0001 and P = .003), or between CR and PR groups (P = .003 and P = < 10(-5)); no differences were observed between the nCR and VGPR groups (P = .2 and P = .9) or between these groups and the PR group (P = .1 and P = .8). A landmark study found a plateau phase in OS after 11 years; 35% patients in the CR group and 11% in the nCR+VGPR+PR group are alive at 17 years; 2 cases had relapsed in the nCR+VGPR+PR group. In conclusion, multiple myeloma achieving CR after autologous stem cell transplantation is a central prognostic factor. The relapse rate is low in patients with > 11 years of follow-up, possibly signifying a cure for patients in CR.
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
For those interested in the Spanish study mentioned by Dr. Kaufman, there is a summary of it in the following Beacon news article:
"Complete Response After Stem Cell Transplant For Myeloma Indicates Best Prognosis," The Myeloma Beacon, May 31, 2011.
"Complete Response After Stem Cell Transplant For Myeloma Indicates Best Prognosis," The Myeloma Beacon, May 31, 2011.
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Thank you Dr Kaufman.
Has the Spanish group (or anyone else) undertaken any similar studies of people who haven't had a stem cell transplant?
When I was diagnosed more than 9 years ago I wasn't able to have a SCT, but after treatment with cyclophosphamide and thalidomide, I've been in continuous remission for more than 8 years. It would be comforting to think that the relapse rate for non SCT patients might also be low after a certain point in time (whether 11 years or later), but I don't know if there is any data to indicate whether this might be the case.
Has the Spanish group (or anyone else) undertaken any similar studies of people who haven't had a stem cell transplant?
When I was diagnosed more than 9 years ago I wasn't able to have a SCT, but after treatment with cyclophosphamide and thalidomide, I've been in continuous remission for more than 8 years. It would be comforting to think that the relapse rate for non SCT patients might also be low after a certain point in time (whether 11 years or later), but I don't know if there is any data to indicate whether this might be the case.
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Dorothy