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Questions about Life Expectancy and Light Chain Numbers

by bitca88 on Wed Mar 21, 2012 8:17 pm

I've done a bit of research on these questions already and seem to be getting conflicting information.

1) What is the median life expectancy for someone with stage 3 Myeloma (assume this person is in otherwise good health and in their early 60s)?

2) What is the average age for someone diagnosed with multiple myeloma?

3) What is the difference between multiple myeloma and Light-Chain multiple myeloma?

4) How is remission progress measured in someone with Light-Chain multiple myeloma? They seem to be measuring my father's "light chain number," however on these forums I see no mention of that number and greater mention of the "M Protein." What is the difference, if any?

Any answers would be greatly appreciated. Thanks!

Moderator's Note:
* For Beacon news articles related to life expectancy, see this link.
* For other forum discussions related to life expectancy, see this link.

bitca88
Name: bitca88
Who do you know with myeloma?: Father
When were you/they diagnosed?: December 2011
Age at diagnosis: 61

Re: Questions about Life Expectancy and Light Chain Numbers

by kaycromie on Thu Mar 22, 2012 11:26 am

I will respond about the life expectancy. Do not, I repeat do not even concern yourself with these statistics. I refuse to read or listen to any talk about survival time. This disease is so unique to everyone, there is no way to tell. I have 2 members in my group that are 21 and 20 year survivors, another member is 14 years and I am a 8 1/2 year survivor and I plan on being around a lot longer. Tell your dad to keep a positive attitude and hold on to the hope that there is a cure right around the corner. I am a self advocate, I know enough about multiple myeloma to understand the treatments and I can carry on an intelligent conversation with my doctor, but I stay away from statistics. I

kaycromie

Re: Questions about Life Expectancy and Light Chain Numbers

by Ron Harvot on Thu Mar 22, 2012 2:31 pm

I have "light chain" multiple myeloma and have never had a measurable M spike. My oncologist tracks my progress through the serum free light chain assay. Below is a link to an IMF general publication on the subject. Generally the treatment of light chain multiple myeloma is no different than with those wit a measurable M spike. To my knowlege there is no statistical data that would infer that people like me have any better or worse prognosis than other multiple myeloma patients. multiple myeloma life dependency is influenced by many factors including genetic markers that may indicate better or worse outcomes. I am doing well by most standards of measurement and have responded well to treatment. However, everyone's journey is unique. It would not be proper to make any over all generalizations about how individuls will respond to treatment. The one thing that is encouraging though is that people diagnosed today are living longer with a better quality of life than those diagnosed 10 years ago. The new novel agents used in combination and as maintenance therapy have changed the landscape.

Good Luck!

Ron

http://myeloma.org/pdfs/U-Freelite-Eng2011_g2web.pdf

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Questions about Life Expectancy and Light Chain Numbers

by Dr. Edward Libby on Sat Mar 24, 2012 11:22 pm

Hello from sunny (today anyway) Seattle!

The life expectancy question is always a challenge to answer. The International Staging System (ISS) for myeloma is widely used internationally. There is an older staging system called the Durie Salmon staging system as well. Both have their merits.
Assuming that you are referring to Stage III disease by the ISS criteria the predicted median overall survival is 29 months. But......it is very important to remember that these are statistics and cannot tell us exactly how an individual patient will do. Patients are not numbers or statistics. Everyone is unique. Your life could be longer or shorter than these numbers report. The staging systems give us valuable guidance as to what to expect but they are not a crystal ball.
One of the most important prognostic markers in 2012 is the genetics of the myeloma. When the ISS and Durie Salmon systems were devised we did not have cytogenetic markers and therefore they are not part of the currently available staging systems. This is a major weakness of the currently avaiable prognostic systems.In addition, young patients (less than or equal to 65 years of age) tend to do significantly better than older patients. Age is also not used in the current prognostic systems.
In general, by cytogenetics, patients may be classified as "standard risk" myeloma, "intermediate" risk or "high" risk. The majority of patients (roughly 75%) are standard risk.
High risk = FISH Del 17p, t(14;16), t(14;20) or GEP with a High risk signature.
Intermediate risk = FISH t(4;14), Cytogenetic (not FISH) Deletion 13 or hypodiploidy
Standard risk = All others including: Hyperdiploid, t(11;14), t(6;14)
Risk = how rapidly the myeloma progresses and the expected lifespan for the patient.

The average age of newly diagnosed patients with myeloma is 70.

In terms of prognosis there is no real difference for patients with light chain myeloma from the other forms.

The progress of light chain myeloma is usually followed by the measurement of serum free light chains or with a 24 hour urine for light chains (Bence Jones proteins).

Best of luck !
Dr. Edward Libby
University of Washington & Fred Hutchinson Cancer Research Center

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Edward Libby
Name: Edward Libby, M.D.
Beacon Medical Advisor

Re: Questions about Life Expectancy and Light Chain Numbers

by Marcia on Mon Apr 02, 2012 3:56 pm

Thank you so much for clearing this up, Dr. Libby! Both the info about the light chain myeloma, for which I was just diagnosed, but even more so for clearing up the staging systems AND their drawbacks. None of those points are discussed on any other site I've read. I wish this information were more widely dispersed-- there are a lot of us anxious folks out there who could benefit from your explanation. Thanks again!

Marcia

Re: Questions about Life Expectancy and Light Chain Numbers

by neilevans66 on Thu Aug 09, 2012 6:42 pm

Hello everyone, I have been diagnosed with multiple myeloma some 12 months ago, after the usual treatment leading up to my transplant in 3 wieeks time I had an unexpected appointment with my consultant, who informs me that my light chains are 1500 and I am to receive chemo and radiotherapy. Can someone please tell me the bare facts about these light chains and the success rate of treatment and of course what to expect about life expectancy, I am only 46, I just wondered if my age is of a benefit.

Kind regards.

neilevans66

Re: Questions about Life Expectancy and Light Chain Numbers

by Ron Harvot on Fri Aug 10, 2012 2:07 pm

Neil,

The International Myeloma Foundation (can be accessed through "links" in the sidebar), publishes a free booklet on Serum Free Light Chains that should answer many of your questons. It is basic and easy to read. See the link I provided in this previous posting (above):

http://www.myelomabeacon.com/forum/questions-about-life-expectancy-and-light-chain-numbers-t945.html#p4490

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Questions about Life Expectancy and Light Chain Numbers

by mrs.kast on Thu Aug 23, 2012 12:40 pm

kaycromie wrote:

> I will respond about the life expectancy. Do not, I repeat do not even
> concern yourself with these statistics. I refuse to read or listen to any
> talk about survival time. This disease is so unique to everyone, there is
> no way to tell. I have 2 members in my group that are 21 and 20 year
> survivors, another member is 14 years and I am a 8 1/2 year survivor and I
> plan on being around a lot longer. Tell your dad to keep a positive
> attitude and hold on to the hope that there is a cure right around the
> corner. I am a self advocate, I know enough about multiple myeloma to
> understand the treatments and I can carry on an intelligent conversation
> with my doctor, but I stay away from statistics.

Thank you kaycrombie! Ive been out of my mind thinking my husband may die in a few short months! you have given me some hope. Now I can breathe! :D :D

mrs.kast

Re: Questions about Life Expectancy and Light Chain Numbers

by pearl on Fri Nov 09, 2012 2:00 pm

I would also like to thank kaycromie for her post. The stats are based on the average (Median). IT doesn't state the extreme. The ones who survive more than the average 5 years. So many underlying factors contributes to each individual unique person. The journey is definetly unique. I have hope that my husband will beat this.

pearl

Re: Questions about Life Expectancy and Light Chain Numbers

by Michael Regan on Mon Oct 28, 2013 12:15 am

On the question of life expectancy, remember that the median expectancy numbers are ONLY pictures from the past. My wife has stage 3 light chain myeloma, and the published 29-month expectancy scared me a lot ... until I realized that this number is based on data from 10 to 15 years ago, which number is based on survival rates and therapies in use around 2000 A.D.

Approached another way, these expectancy number reflects results of older therapies, BUT we are in an era of better comprehension of various cancers, AND with newer drugs which can target cells in ways that were not even conceived of in 2000. (Our oncologist told us that she has anecdotal evidence from her myeloma patients that median survival has significantly improved over the published number above.)

So, we all are part of the experimental phase of the struggle against cancer. As well, each person brings unique genetic and environmental circumstances to the battle, such that the best advice was written earlier: just ignore the expectancy numbers.

Michael Regan

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