Emilia.Cure

Multiple Myeloma Life Expectancy: Predicting the Prognosis of Multiple Myeloma

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Peter Boyle of "Everybody loves Raymond" was diagnosed with Multiple Myeloma

The one thing that I have learnt through my years of experience in the field of medicine is that cancers have a mind of their own and predicting the prognosis of the disease is one of the toughest jobs that a doctor has to do. This is also the case with Multiple Myeloma – a rare type of cancer that afflicts the plasma cells in our body. Calculating Multiple Myeloma life expectancy is tricky, since a lot depends upon the extent of malignancy, stage of detection, response to treatment, etc. However, I do understand that it is highly important for the family of the patients to know how much more time they have with their loved one. Hence, through this post I am going to discuss a few points that help predict the life expectancy of a person suffering from multiple Myeloma.

Multiple Myeloma, as mentioned earlier is one of the rare types of cancer that affects the plasma cells of our body. Plasma cells are a type of white blood cells (components of our blood) that constitute our immune system. These cells are created in our bone marrow and are transported throughout our body. Hence, a when these cells turn cancerous there is no stopping them – Multiple Myeloma is one of the few neoplasms that is rarely localized and advanced malignancy cannot be completely stopped.

The life expectancy and prognosis for Multiple Myeloma can be made only after taking all aspects related to the disease into consideration. Some of the factors that affect the prognosis of Multiple Myeloma include

age & previous medical history of the patient,
extent of kidney damage caused by the immunoglobulin secreted by the plasma cell clones
initial response to treatments
stage of the cancer wherein the condition was detected and the treatment was started
relapsed, refractory or responsive myeloma
genetic mutations (such as translocation of parts of chromosome 14)

Based upon these factors, cancer experts usually predict the life expectancy for Multiple Myeloma depending upon the stage of the cancer.The stages are determined based upon the serum albumin and serum beta-2 microglobulin levels. According to this system,

At Stage I, i.e albumin ≥ 3.5 & beta-2 microglobulin ≤ 3.5, the median survival is 62 months and
At Stage II, Multiple Myeloma (beta-2 microglobulin levels are 3.5 to 5.5) it is 44 months for patients with stage II .
For patients with stage III disease, who show a beta-2 microglobulin levels of more than 5.5, the median survival rate reduces to less than 44 months.

However, as mentioned earlier, these are just median figures and may not hold true for everyone. Also, factors like early detection and timely treatment increase the life expectancy greatly. One need not despair on being diagnosed of Multiple Myeloma. Several public figures like Peter Boyle, Roy Schneider (of jaws fame), Actress Lisa Ray , Kathy Guisty (founder of the Multiple Myeloma Research Foundation) have continued with their life in spite of the disease. And some such survivors include Pat who has a great blog on living life with Multiple Myeloma

Treatments like stem cell transplant and newer treatments such as thalidomide, lenalidomide, velcade, have helped improve the prognosis of the disease. In case you want to help the cause of Multiple Myeloma, you can do your bit by participating in one of the active Multiple Myeloma clinical trials underway in areas near you.

Jerry

thanks for this informative post – it is encouraging to see the life expectancy increase over time
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conadmin

we just learnt that Geraldine Ferraro died today. She had been battling multiple myeloma for 13 years now. Her struggle is an example that one can have a decade or more of survival also after being diagnosed with myeloma!
madelon qualls

i was diagnosed in feb 2009. i have had a stem cell transplant. the myeloma cell percentage is less than 2% now. I will not let this disease dictate my life. I trust in God and i will fight this disease. I will live my life to the fullest each day.
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Regina

My Significant other was Diagnosed with smoldering myeloma in March of 2006. He took Thalidomide for 2.5 years and had to stop because of peripheral neuropathy. He was off treatment for 8 months but then was put on Velcade with out Dexamethasone with a poor response. Doxil was then added and again the response was poor. He then received induction therapy with Velcade, Dex and revlamid with a good response and was admitted to Brigham and womans for a stem cell transplant. He had lots of cytopenia’s with the induction therapy and had a difficult time collecting cells for the transplant. He had a great initial response to the melphalan during transplant but with in months his IGG started to rise. We took a vacation in March ( 1 month in florida) which turned out to be a disaster. He was admitted for pneumonia and when that was over he had a pathalogical fracture of his hip. He had a partial hip replacement and was transferred home. The Doctors tried treating him with Velcade and high dose Dex but his counts dropped so low that he could only get 2 of the 4 days. He also had a steriod psychosis from the dex. It was decided to stop treatment and start hospice. It has been a rough 5 years and we hope we are doing the right thing by stopping treatment but it seems that no matter what we do his response is either none or limited. I am an Oncology Nurse and I just want him to have some quality time before the end.

Regina
Regina

One other thing I forgot to mention is that he was on maintenance revlamid when we were in Florida and still he progressed.

Regina

Emilia.Cure

Hi Regina,

Thanks a lot for sharing your personal experience in context to this article. I can understand the severity of the situation you are going through for last 5 years. There are certain clinical trial programs on Multiple Myeloma, which might become helpful in this condition. Please look into them and take experts suggestion before joining.
https://myeloma.trialx.com/match2trials/?keyword=multiple%20myeloma

With sincere regards,

Emilia

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TeresaK

So what you are really saying is the following

1. If you are stage 1 multiple myeloma, than of 100 people 50 or more have a survival of at-least 5 yrs 2 mths (62 mths) from the day of diagnosis
2. If you are stage 2 multiple myeloma , then of 100 people 50 or more have a survival of at-least 3 yrs and 8 mths (44 mths)
3. That if you are stage 3, then out of 100 people, 50 and more will have survive for less than 44 mths

Is that correct? and it doesnt matter what treatment etc one has had?
Tom

I was diagnosed with Stage 3 multiple Myeloma in August of 2010. My symptoms were acute kidney failure. I started dialysis and after 3 weeks normal kidney function was restored. I then started Velcade with dex. By December my counts were good enough to start a stem cell transplant in January. It is now July and my numbers look great and I feel great. I do not bother with the life expectancy forecasts for each stage level. Worrying about it will only drive you crazy. Just live each day to its fullest.
http://Marlene_ruiuz72@hotmail.com marlene Ruiz

Ll love how you think…my dad is stages 3 mm,,and he was diagnosed 2 yrs ago…and he looks great,,its hard for me when l read the survival expectancy,,but l believe in God and l know he will dance with my doughter when she turns 15 yrs old

Steve

thanks for that beautiful and inspiring comment, marlene! yes the above are just numbers and several people have gone on beyond the average life span.
the founder of the MMRF, Kathy Guisti herself has been a survivor for more than a decade. So was geraldine ferraro, ex-VP candidate who passed away recently.
You should also read blogs by other survivors like Pat

Sonja

Thank you all for sharing your experiences, thoughts, fears,,,,,,,I am new at this so if I say the wrong thing plz forgive me……My best friend of 30 years was diagnosed with this terrible disease today. She is only 39 years old and very scared, with not alot of information, so anything would be of great help…..Thank you once again
Marilyn

My father just passed away fighting multiple myeloma for the past 3+ years. He was 81 when he was diagnoised and had dex and Rev. in Arkansas for treatment to save his kidneys. We thought we were just fighting for kidney use. Then he changed over to the VA in B’ham., AL and was given more Chemo., nearly 19 doses, and really went downhill fast. I think his quality of life would have been much greater if the VA has of left him alone. He felt so bad that he lost his will to fight and would not eat. HE was left in bed and eventually developed penumonia. His back was broken 4 times and his hip was almost gone. There were large lumps around his waist on his back. He was on hospice at this point and had lost 45 pounds. You must eat and drink for nourishment to fight cancer. The VA would not give him myerenol that he had the first sessions and it sure did make him eat. I wish I had of known that this cancer progressed this way. The doctors seemed to use him as an experiment and I will always regret not taking him and caring for him in my own home. I missed alot of time with him and talking about the good times because the doctors said he would live to around 95 after his first chemo. They said he would be killed by a bus before he died from this disease. Love these people with this awful disease as hard as you can, because it is very tricky and painful. He never complained much until Hospice and the heavy drugs,then he could not talk and we could only hug him and this is so painful. He always was such a healthy looking and hard working man. I miss my friend and my dad every day. Younger patients wiith this disease have so much to look at to fight this cancer, but in your 80′s, it’s just too much to expect to survive very long. He was an army air corp. witness of the bomb tested at Almagordo, NM and I think this led to his disease. I myself am a colon cancer survivor of 14 years and was just 44 when I was diagnoised. I had the best of care and a very loving and caring support system. I pray that all Myeloma patients have much time left to be with their families. Don’t think that a person that looks fairly well that they are not in danger, because cancer is the silent killer. Pray, love and support these patients because it goes so far. GOOD LUCK! to each one of you fighting this disease and may many new treatments be available to you. This may not be as inspiring as it should, but it will make everyone aware of how serious it is to take excellent care of these patients. Don’t let time slip away. If you are young enough, or are extremely healthy, you can beat this time expectancy with bone marrow transplants. There is much hope as I have heard miracle stories at the cancer centers. Marilyn
LYNN

Thankyou all for the information I have read above. I was diagnosed with Smoldering Myeloma 3 years ago. I had several Velcade treatments & after 6-7 weeks my Doctor told me he could not find any Myeloma Cells in my Bone Marrow Biopsy, no plasma cells in my blood & my skeletal scan was perfect. He told me to come back in 6 months. I came back in 6 months and my myeloma had progressed to a Stage 2. I had a Stem Cell Transplant 1 year ago July 29th. All of my post-op check-ups have been very good. I could have sworn the Dr. who was in charge of my Transplant told me I could like a long healthy life, until I was 60-70 as long as we kept it at bay. I am currently taking 10mg Revlamid 1 week on & 1 week off & that is all I am getting at thiis stage. I am also taking every 2 weeks IV Aredia. I just went in my regular Oncologist last week and he said my “numbers” were still looking good, but that I was not in total remission. He stated if I do not reach total remission within 1 year I will have to have another Stem Cell Transplant. He did say my “numbers” were going down ( whatever M-Spike is) & that I do not have any Myeloma cells in the last Bone Marrow Transplant I had approx. 4 months ago. I guess I made the mistake of asking him what the Prognosis of my disease was. His answer was not at all what I got from my Transplant MD. He said 10-15 years. I freaked out & right now it is all I think aobut. I didn’t ask him was that from now or from the time I was diagnosed 12/18/08. I am a very spiritula woman & I believe in the healing power of Prayer through my Personal Saviour Christ Jesus. I cannot seem to come out of this “funk” from the new I received last week. I feel great & through this entire ordeal I have never felt like I was sick. I embarrassed becaused I’m not relying on God the way I know that I should right now. I guess I just have to get over thej”sting” of what my Doctor told me last week. I am 54 years old @ present. Diagnosed @ age 51. Can someone give me some words of encourgemnent. Do you know anyone who has gotton this disease and lived a relatively long and productive life. Of course I mean if there were no major complications that could not be reversed, diminished, or gone into remission. I had such a positive attitude before he told me this. I guess ignorance is bliss. I want to choose what the Transplant Doctor told me regarding my prognosis. I have god to stop feeling like I’m going to be dead in 7-12 years. When it is put to you that way it doesn’t seem long enough. Please…..someone help me to get my head clear & get back on the positive track I was on before 2 weeks ago. Thank you all…..Lynn.

DW

Know how you feel, baby! Am out of SC Xplant 8 months and sometimes have the same fight with the funk! But, when I got diagnosed and all through hell and back, it never occurred to me that I would succumb to MM. I kicked the crap out of MM, am back to work, and feel and look devastatingly handsome! Really! Hair is back and it’s darker. I’ve stopped giving compliments to my brother for his stem cells since I don’t want to make his head any bigger – he has elephantitis of the head (it’s a Larry The Cable Guy joke!) When I die, it will be because I ate too many crawfish and gumbo, drank too much wine, and went to too many parades and cochon du laits (dances in cajun/french)

As for your question – there a tons of folks who have lived 15, 20, 25 years after diagnosis. To make you feel better, look at the people who die form this and don’t even know it. Usually, MM is something on top of something else like kidney failure, heart problems, diabetes. So the fact that MM is about all you have is better since you’re above ground. Just think, if I die, it’s not going to be because of this crap. MM stinks, but it ain’t gonna kill me. And if you put as much faith in the Big Guy upstairs as you claim, then I find it cute that you still think you have any control over your disease, remission and recovery. Resign yourself to His care and charge, and you’ll be fine! And stop listening to your damned doctors – all the Orwellian double-talk will make you insane.

Sursum Corda

LYNN

MARILYN, THANKYOU FOR THE HOPE YOU HAVE GIVEN ME. YESTERDAY I WROTE A REPLY & I DO NOT EVEN SEE MY NAME HERE NOR MY REPLY. IT WAS RATHER LENGTHY REGARDING MY DISCONTENT WHEN I SAW MY MD LAST WEEK AND HE TOLD ME THE LIFE EXPLECTANCY OF SOMEONE WITH MULTIPLE MYELOMA WAS 10-15 YEARS. I DON’T WANT TO GO INTO TO MUCH DETAIL AS MY REPLY EXPLAINED WHAT I HAD BEEN THROUGH, AM GOING THROUGH AND VERY MUCH NEEDED SOMEONE TO GIVE ME SOME WORDS OF ENCOURGEMENT DURING MY TIME OF NEED TO HEAR SOMETHING POSITIVE. WHERE DID MY REPLY GO? I JUST LEFT IT ON HERE YESTERDAY. COULD SOMEONE HELP ME PLEASE? LYNN.
Eileen

Hi Lynn,
I am a MM survivor. My stem cell transplant was 40 months ago. I’m 58 years old and my counts have been rising for a few months now. I am still seeing the oncologist every 3 months but the Dr says we will be working toward another transplant once my counts get high enough for treatment. I have been on no maintenance since the SCT.
I have not had a bone marrow biopsy for years because my hospital can find my numbers with a light chain blood test! Check with your doctors to see if that’s a possibility for you. I am treated in the Chicago area.
My Dr says they have found that after second transplant the remission time tends to be longer than after the first transplant!
God Bless you and here are a few encouraging verses
I am with you always MATTHEW 28:20
May the God of hope fill you with all joy and peace as you trust in Him ROMANS 15:13
Our God is near us whenever we pray DEUTERONOMY 4:7

Take care, Eileen
Janet

Hello,I was diagnosed.with MM, Dec14,2010. I had a bone marrow count of 17%, and was told I would need Bone Marrow Transplant, before Christmas 2011. I was 47 when diagnosed. By June 2011 I had a count of 25% (criteria is 30%). I have a secondary disease that had me off work and concerns me reguarding how I will hold up to treatment. I have many prayers being sent in my name…and the Oncologist does not know why, but I am Still under 30%!! Yay! Only tested 26%. If they could extend my life 10-15yrs, that would be awesome. My current goal is my 50th…. Once there I will set another one. I’ll be 49 soon… Busy getting lIfe in order, just in case.
Diana Vandall

Lynn,
My father has been batteling MM for 11 years now.
He has lived a fairly normal life, with some complications
throughout the years, he was given 6 months to live when
he was first diognoised, we feel very fortunate to have had
this wonderful time with him. None of us are promised tommorow,
so lets not worry about numbers and live every day to the fullist.
Thats the way we have got through this disease. He is very critical
at this time and is now 73 years old, I feel like you have your age
on your side. The doctors don’t know-only god knows your life expectency. It was known by him even before you were born. God bless You and have faith, that will take you far.
Diana
Edward

Hi,

My father passed away in Jan after 6 years at 73 of battle with Multiple Myeloma. One thing that I really struggled of is that the doctor advised him not to do bone marrow transplant by the time when he was diagnosed and he was 67 at that time. He had been receiving chemos and all the measures were well under control until last September, every was turned up-side-down, and he was sent to the hopsital, the cancer cells was already 97 percent. We asked the doctor again and see if bone marrow transplant could help as the last option, and the answer was the same as 6 years ago, “No”, bone marrow tranplant could not be done, because he was too old.

Could someone give me some advise and see if the doctor had really done the right job in making the decision of not doing the bone marrow transplant for my father?

Much appreicate for any inputs!

Best regards,
Edward
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Sue

I was recently diagnosed with MM and I am refusing to let them kill me with their chemicals. I am following a natural protocol. If any of you are interested in checking this out go to http://www.cancerfightingstrategies.com/multiple-myeloma.html
Liz Bird

my sister has been fighting multiple myeloma for over 2 years. She has had a bone marrow transplant and then another transplant. After the first one she was in remission for 17 months. Then she had another transplant and never really went into remission. Her numbers got a little lower and then shot up again. We just found out today that she has some major lesions in her legs and will have to get a walker tomorrow. She is 61 and is terribly depressed and now says that if the current treatment does not work (radiation) she just want to take morphine and die. There is a new drug that is supposed to be out soon and her doctor is trying to get a compassionate release for her. At this rate, she will not be around very long.
angela

angela

i was diagnosed with mm at the age of 41 years old I had two stem cell transplant in 2010 they failed. I went in septic shock and was admitted to icu unit in october 2011 when my port cause me to have a blood clot. I will be 44 this september i currenlty work and do chemo two days a week. i am in a blind study for perifosine. just got to keep on fighting.