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Life Expectancy

by RedDog on Sat Feb 25, 2012 12:09 pm

Can anyone share with me the life expectancy with a multiple myeloma diagnosis? I was first told it was treatable and curable from one oncologist after I was first diagnosed and that was Sept. 2011, then yesterday I was told by my current doctor that it is treatable but not curable. I was diagnosed at stage 1. Any information on life expectancy would be appreciated.

Thank you

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RedDog
Name: Art
Who do you know with myeloma?: Myself
When were you/they diagnosed?: September 27, 2011
Age at diagnosis: 51

Re: Life Expectancy

by Art on Sat Feb 25, 2012 2:31 pm

Hi RedDog
I would be Reluctant of anyone who uses the term Curable and I think most will agree. Be careful of the Statistics you read because most of them are old. There are many many people living with this that have had it for 15 or more years. Obviously they have had their battles but treatment is so much better and more targeted these days. I was diagnose with Smokdering Myeloma 12/2011.
There are many new treatments coming all the time.
Find yourself a Dr. That specializes in multiple myeloma and educate yourself. This Website is a tremendous source of information and the Community of people is wonderful and Very helpful. You will be amazed at the response you will get.
Plan on living a long life and stay positive!! There are many good Clinical Trials going on depending on where you are from. Have you had any treatment? What area of the Country are you in? What are your numbers? Labs, Bone Marrow Biopsy etc...
Good luck, Stay Strong and be ready for the Long Haul!!
Art

Art
Name: Art
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/2011
Age at diagnosis: 40

Re: Life Expectancy

by Jenn on Sat Feb 25, 2012 2:45 pm

Life expectancy was one of the first things I searched for when my husband got his diagnosis. What I have found is that a) it truly varies from one individual to the next; and, b) with the new drugs now available and those that are in trials, life expectancy rates are increasing.

So, I have to agree with Art, above. There are many variables when it comes to this. When I first read about multiple myeloma, it seemed the average was 3-5 years after diagnosis. Then, after more searches, I see the rates soaring and people are going along with 10, 15, 20+ years. I honestly see that this soon will become a manageable, chronic disease.

As Art said, plan on living a long life! There is indeed lots to look forward to.

Jenn
Name: Jenn
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September 2011
Age at diagnosis: 45

Re: Life Expectancy

by suzierose on Sat Feb 25, 2012 2:51 pm

Hi RedDog

You may find this information useful:

"There is significant variation in the survival of patients with multiple myeloma. Based on the ISS, the median survival of patients with stage I, II, or III disease is estimated at 62, 44, and 29 months, respectively.6 Although serum β2-microglobulin and albumin levels combine in the ISS to provide a powerful prognostic tool, a number of independent prognostic markers have been described that may further assist in predicting outcome. Many established prognostic markers allowing identification of high-risk patients early in the disease course have been derived from studies of conventional chemotherapy and include age, β2-microglobulin level, World Health Organization (WHO) performance status, serum calcium, interleukin-6 (IL-6) level, bone marrow plasma cell labeling index, and morphological features. However, in the current era of high-dose chemotherapy, novel immunomodulatory agents, and new small molecule inhibitors, a number of other prognostic markers relating to mechanisms of disease progression are now considered to be important.
Abnormal cytogenetics play a dominant role in predicting the outcome of patients with acute leukemia, and the evidence now suggests that cytogenetics have a similar role in multiple myeloma. Tricot and colleagues20,21 observed, using standard cytogenetic techniques, that in patients with newly diagnosed or previously treated disease, the presence of partial or complete deletions of chromosome 13 (del13q) and 11q abnormalities were associated with inferior event-free survival (EFS) and OS. In addition, they noted a significant association between the unfavorable karyotypes and immunoglobulin A (IgA) isotype, elevated levels of β2-microglobulin, and age >60 years."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899783/

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Life Expectancy

by grpetersen1 on Tue Mar 06, 2012 5:38 pm

Art, there is a recent Beacon article by Dr. Rajkumar of the Mayo clinic that maps the complexities of multiple myeloma as a disease.

http://www.myelomabeacon.com/news/2012/03/01/understanding-prognosis-in-multiple-myeloma/

It is this complexity, and especially high risk vs low risk disease that makes it so difficult to predict an individuals life expectancy. It is also this complexity that so very clearly supports my believe that you need a multiple myeloma specialist that lives and breaths this disease to ensure long term survival. When I was diagnosed with dialysis dependent kidney failure, the statistics were for a 3 month average life expectancy, and 6 years later I am still still here and in CR, and drug free for the first time. I got great treatment at Mayo in Jacksonville, and then at UAMS. UAMS was one of the only hospitals at the time that posted survival statistics. They listed 7 years vs. the then average of 3 years. I chose to try to get the extra 4 years, and for me it worked. Now more locations provide survival data, and you can find it if you google survival statistics. Good luck and god bless you on your journey.

Best Regards,

Gary

grpetersen1

Re: Life Expectancy

by Kay on Wed Mar 07, 2012 2:30 am

Hi,

There is a member on another forum that I follow who says that she finally has no detectible M spike after 20 years and technically is in CR. She had a transplant in 1994. This gives a whole new picture for those just starting out as the tx scenario is much different than when her journey started in 1991.

Kay

Kay
Name: Kay
Who do you know with myeloma?: MGUS
When were you/they diagnosed?: 2004
Age at diagnosis: 63

Re: Life Expectancy

by suzierose on Wed Mar 07, 2012 6:11 am

Hi Kay,

I agree that the treatment strategy is significantly different today than 20 years ago, in some cases.

The thing that I also see is those therapies did not have success in loads of patients, necessitating the need for other treatment options. Just think, newly diagnosed multiple myeloma patients walk in doctors offices daily, 2 decades later and are told the disease is incurable.

Your sister in law can count herself as blessed given her wonderful outcomes for over 2 decades.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Life Expectancy

by Art on Wed Mar 07, 2012 12:08 pm

Hi Kay
That is awesome. I would personally call that a Miracle. We can only hope to have the same Success. I am only currently Smoldering. (depending on my labs for next week). But it's hard to think of myself as " pre myeloma". It is getting better since my dx in Dec. 2011. I can finally go for more than 10 or 15 mins. without thinking about it.
Best Wishes and Gods Blessings
Art

Art
Name: Art
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/2011
Age at diagnosis: 40

Re: Life Expectancy

by laetetia on Fri Mar 09, 2012 7:20 pm

In 2001 my partner was told maximum 2 years, probably a lot less. Told minimal chance he would survive SCT. But he did. He took no drugs at all for 10 years and only now with levels rising a bit, has he restarted treatment. There is so much research going on and so many new findings, that I agree with the others. It might not be curable yet but it is treatable and as you can see on this site, so many people have been living with it for 10, 15, 20 years trying different medications and just adapting their life around their treatments. Eventually I know a cure will be found so the aim is to live long enough to be cured.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: Life Expectancy

by Kay on Mon Mar 12, 2012 6:40 pm

Hi,
A few more people have chimed in on the other forum that I follow. There is an 18 yr, 22 yr, and a 25 yr survivor. So there is hope.
Kay

Kay
Name: Kay
Who do you know with myeloma?: MGUS
When were you/they diagnosed?: 2004
Age at diagnosis: 63

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