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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Life Expectancy

by Beacon Staff on Mon Mar 12, 2012 8:59 pm

If people are not familiar with it, one of the first weekly polls we did here in the Beacon's forum was a question that asked: How long has it been since you were diagnosed with (active) multiple myeloma? I think people following this thread will find the results very interesting. Here's the link:

As you will see, there are many longer-term survivors among the almost 200 people who responded to the poll.

By the way, there are lots of other interesting topics covered in the weekly polls. They are worth checking out -- and participating in -- when you get the chance.

Good luck to everyone!

Beacon Staff

Re: Life Expectancy

by Canuck Bob on Tue Mar 20, 2012 5:52 pm

I was diagnoised last winter as stage 1 and one of the more benign genetic versions. When I researched the life issue I was shocked and thought I better get things in order. The internet is full of dreadful info in that it is dated. I have been almost living in a Cancer Center for over a year it seems. I know many people who have survived over ten years now. They all relate the startling advances for treatment in that time. They are also confident in a bright future due to research.

The one thing that multiple myeloma seems to offer is that most of us can expect decent response to treatment, specially stage 1 diagnosis. It is not like some cancers that have rapid dire consequences. My Oncologist has given me a very positive prognosis since my ASCT put me in remission. He is confident that I can expect years of remission before any return to active multiple myeloma. He also is confident that the advances each year are in my favor. He is finding a significant number of patients never do relapse compared to a few years ago.

I understand the disease is highly treatable but not curable at this time. It seems these are actually highly technical terms and not always what we laypeople understand them as. I am finally at the point that if I had to get the big C multiple myeloma isn't as bad as many other cancers.

I do not want to appear to be minimizing multiple myeloma. Treatment is no stroll in the park but the chances of a positive response is high from my experience and observation.

Canuck Bob
Name: Bob
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb. 2011
Age at diagnosis: 57

Re: Life Expectancy

by Nipon Ginko on Sat Apr 07, 2012 1:35 pm

Red Dog , 6 months ago I ask my Oncologist (he's head of the dept.) Point blank -How long has your longest surviving patient survived after being Disgnosed with multiple myeloma , after a brief pause he said over 10 years , I did not think to ask him if the person is still alive ? I'll do that next visit. I am currently 73 years old & am doing pretty well all things considered after 8 years in remission -I was treated with Thalidomide & Dex & nothing else - back in 2004. I think attitude has a bearing on survival, case in point a friend of mine came down with Prostrate Cancer about 30 years ago it eventially went into his bones , they really did not have any treatment for him at this point -But he decided that he was going to fight it-a very strong willed individual , he just recently died from a heart attack at the age of 86 & I feel that if he had not been alone when that occured he might still be with us. best regards N.G.

Nipon Ginko
Who do you know with myeloma?: ME
When were you/they diagnosed?: 2004
Age at diagnosis: 66

Re: Life Expectancy

by GaryH on Sun Apr 08, 2012 12:54 pm

I missed that poll, but will do it after this. I was diagnosed in Nov./1997 with stage 3. I've wondered how long i had it prior to diagnoses. How long does it take to get to a stage 3?
Anyway, i agree that it depends on the individual & treatment, so it's a matter of how well you can tolerate some things & where your mind-set is. I believe the biggest factor is the individuals spiritual belief(which controls the mind, which controls the body). When i was first diagnosed, i turned to the Science of mind teachings & that helped me get on the right track. It's not for everyone, but worth checking out. (not religious).

Name: GaryH
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Nov./97
Age at diagnosis: 44

Re: Life Expectancy

by terryl1 on Sun Apr 08, 2012 7:17 pm

Hi Gary H., I like your attitude! I am SMM high risk for progression. My NIH doctor told me that many of statistics on the internet are so out dated as to be irrelevant. He is super positive about newer treatments coming out in the next few years which could effectively "cure" myeloma. My UPenn doctor told me the first day I met him that "we were going to be friends for years and years". I loved that he said that to me and I trust it was not BS. I think of his words a lot. He also told me he has many patients who are 10+ years in terms of survival and one in particular who had an auto SCT 16 years ago and not a hint of myeloma since then and no additional treatment. I am so fortunate to have them on my side. Hope that I will see my boys reach their formative years and that I will be there for them is a powerful motivator. Happy Easter/Passover to all. Terry from Haddonfield, NJ

Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Life Expectancy

by Nancy Shamanna on Sun Apr 08, 2012 8:17 pm

I am also wishing everyone reading a good prognosis. I think that treatments are improving, and that we should not panic or worry all the time about our health issue, Myeloma. Am so grateful to be in good hands medically and also part of a big online support group, as well as a local one. I think that it all helps in one's recovery, or ongoing treatments for what has to be a challenging disease, as they say. Best wishes to all. Happy Easter, best wishes for Passover, Happy Ugadi (Indian) and also Happy Spring, and hope that all the rabbits don't eat up all the tulips! I feel that for the younger patients, you will achieve your goals of have time on your side!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Life Expectancy - 8 year O/S of 75% for the following subgro

by Dan D on Wed May 02, 2012 12:48 pm

According to this recent French study, the following parameters identify a subgrop of newly diagnosed patients with an 8 year probability of survival of 75%:

Age: less than 55
Beta-2-microglobulin: < 5.5
No t(4;14) translocation
No loss of the short arm of chromosome 17, or del(17p)
No gain in chromosome 1q

I have not seen any details of the study....

Profile Predicts Longer Survival in Multiple MyelomaBy: MARY ANN MOON, Oncology Report Digital Network

Investigators in France have identified a profile that predicts longer survival for one in five patients with newly diagnosed multiple myeloma, according to a study published online April 30 in the Journal of Clinical Oncology.

The absence of three key chromosomal abnormalities in malignant plasma-cell samples, together with a low beta-2 microglobulin level, was seen in this subgroup of patients. In addition, patients younger than 55 years had longer progression-free and overall survival in a relatively young population that was limited to patients less than age 66 years.

The finding favoring younger age was unexpected and "to our knowledge, it has not been reported before," said Dr. Hervé Avet-Loiseau of the hematology laboratory, Biology Institute, University of Nantes (France), and his associates.

Whereas most prognostic studies are designed to identify myeloma patients with poorer outcomes, the researchers sought to identify patients with longer life expectancy. To that end, they updated and reanalyzed the data of patients treated in the IFM (Intergroupe Francophone du Myelome) 99-02 and 99-04 trials.

Sixty percent of the 520 patients studied did not carry any of the three high-risk genetic abnormalities. Those who also were younger than age 55 years and had beta-2 microglobulin levels less than 5.5 mg/l had an 8-year probability of survival of 75%. "This subgroup represented 20% of the entire patient population," the investigators noted.

Two of the chromosomal abnormalities – t(4;14) translocation and loss of the short arm of chromosome 17, or del(17p) – are known to be associated with a poor outcome and usually are assessed as part of risk stratification in patients with multiple myeloma. The third abnormality – a gain in chromosome 1q – has recently been recognized as a prognostic indicator but has not yet been added to the typical panel of genetic probes used to assess patient prognosis.

To determine which prognostic indicators can be used to define shorter or longer survival, rather than just "poor outcome" or "better outcome," Dr. Avet-Loiseau and his colleagues included the assessment of 1q gains along with t(4:14) translocations and deletions of 17p in this large series.

For their study, Dr. Avet-Loiseau and his associates analyzed stored bone marrow and plasma samples of 520 patients who had all received the same induction regimen of vincristine, Adriamycin, and dexamethasone followed by high-dose melphalan. All the study subjects were younger than age 66 years. Median overall survival was 7.5 years.

A total of 11% of the cohort had t(4;14) translocations, 5.4% had del(17p), and 33% had 1q gains (J. Clin. Oncol. 2012 [doi:10.1200/JCO.2011.36.5726]).

In contrast, patients who had two or more of these prognostic factors had a median overall survival of only 33 months. The findings indicate that assessment of 1q gains should be added to the panel of probes used routinely in determining prognosis in patients with multiple myeloma, the researchers said.

"The question now concerns the role of novel drugs in this prognostication," the authors wrote. None of the patients received bortezomib (Velcade) in first-line treatment, although most were given novel drugs upon progression.

Dan D

Re: Life Expectancy

by janner on Fri May 04, 2012 11:34 am

I was diagnosed in 2000 and I am still in CR today :D My first autologous stem cell transplant was in Sept. 2000, and my second one was in 2004. I have had no treatments for almost 8 years now, but I do see my oncologist and nephrologist 3-4 times a year so they can keep an eye on me.
I am so thankful for all of the advances in treatments that have been made over the past few years. If relapse does happen, there will be much more available to me.
I know it's hard, but try not to think too much about life expectancy. Get the best treatment you can, surrender to the process and visualize your remission. Everyone has a different journey with this disease........I got my affairs in order (as I would have done with any cancer disgnosis) and I have learned to live each day fully. Statistics are too cut and dried to consider all of the variables in each person's life.
I keep on going, even though statistically, I should not be here.

Who do you know with myeloma?: myself
When were you/they diagnosed?: 2000
Age at diagnosis: 47

Re: Life Expectancy

by Ben S. on Fri May 04, 2012 12:07 pm

Hi, Janner:

Still in CR! It's remarkable. Do you mind sharing some of your stories, such as what treatment regimen you went through? Thanks!


Ben S.

Re: Life Expectancy

by BuffaloPat on Fri May 04, 2012 2:49 pm

I would not give survival statistics too much power. They tend to be misleading and disturbing. I've never heard a medical professional use the term "curable" with multiple myeloma, but they do emphasize that it is a manageable chronic condition rather than a death sentence. Still, I would be encouraged that your doctor views your particular case in the realm of curable. I was diagnosed with Stage IV (even though stage III seems to be the most advanced) nearly nine years ago and have had CR for the past seven years. I am happy to know that 25-year survivors are out there. I wish you well as you navigate the multiple myeloma state of being and uncertainty. This site is a good place to help with that.

Name: Pat
When were you/they diagnosed?: 2003
Age at diagnosis: 51


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