I will agree with what most everyone says on that it depends on the person. What stage you are coming into the treatments, how your body and mind handle the chemo and the knowledge your doctors and nurses have to help you. After 5 and half years of treatments I am now in complete remission. I was 90 % infected when the doctors finally figured out what was wrong with me. So there is hope. I wish you the best and try to remain at peace as you are going through your treatments.
Theresa
Forums
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Theresa - Name: Theresa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct. 31, 2006
- Age at diagnosis: 46
Re: Life Expectancy
Hi Ben S.,
When I was diagnosed in January of 2000 with multiple myeloma and Amyloidosis of the kidney, my doctor said it would take a year of treatment....and it did. I was in the hospital for one week each month for 6 months, on a constant I.V. drip of CVAD. (Cytoxan, Vincristine, Adriamycin, Dexamethasone). In July, I was in the hospital for 3 weeks to do the stem cell harvesting ; in September I went back in for 3 weeks, for total body radiation, high dose chemo (Melphalan), and the actual transplant.
I'd say treatment has changed a lot over the past decade - I don't see many people speak of that much hospital time anymore.
I had a relapse in 2004, when the Amyloid kidney started acting up, and needed a second transplant. This time, I had the harvesting done as an outpatient, and then was in the hospital for 3 weeks for high dose chem and then the transplant.
During the first couple of years after diagnosis, I also had Pamidronate infusions. This had to be stopped after my kidneys reacted badly to that drug.
I was lucky that this combination of treatments worked so well for me. I wish everyone the same positive response from their regimen.
When I was diagnosed in January of 2000 with multiple myeloma and Amyloidosis of the kidney, my doctor said it would take a year of treatment....and it did. I was in the hospital for one week each month for 6 months, on a constant I.V. drip of CVAD. (Cytoxan, Vincristine, Adriamycin, Dexamethasone). In July, I was in the hospital for 3 weeks to do the stem cell harvesting ; in September I went back in for 3 weeks, for total body radiation, high dose chemo (Melphalan), and the actual transplant.
I'd say treatment has changed a lot over the past decade - I don't see many people speak of that much hospital time anymore.
I had a relapse in 2004, when the Amyloid kidney started acting up, and needed a second transplant. This time, I had the harvesting done as an outpatient, and then was in the hospital for 3 weeks for high dose chem and then the transplant.
During the first couple of years after diagnosis, I also had Pamidronate infusions. This had to be stopped after my kidneys reacted badly to that drug.
I was lucky that this combination of treatments worked so well for me. I wish everyone the same positive response from their regimen.
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janner - Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2000
- Age at diagnosis: 47
Re: Life Expectancy
Hi, Janner:
Thanks! Given the time when you were diagnosed and the drugs available at the time, your treatment outcomes were all the more remarkable. You are right that newly diagnosed patients have more options now. But that also places a heavy responsibility in the hands of the patients to pick the right treatment approach, though I do think these are good options to have. Wish you continue to stay in remission and enjoy life to the fullest.
Ben
Thanks! Given the time when you were diagnosed and the drugs available at the time, your treatment outcomes were all the more remarkable. You are right that newly diagnosed patients have more options now. But that also places a heavy responsibility in the hands of the patients to pick the right treatment approach, though I do think these are good options to have. Wish you continue to stay in remission and enjoy life to the fullest.
Ben
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Ben S.
Re: Life Expectancy
It's amazing how many reputable websites are still reporting short life expectancies with multiple myeloma
Besides myself, I know 3 other multiple myeloma patients. I'm the newcomer at 2 and half years since diagnosis. But the other three are between 5-8 years post diagnosis and we are all doing fine.
Since the average age of diagnosis is late 60's, that would mean a lot of people in their 80's are also diagnosed. I imagine their life expectancy would be much shorter due to not tolerating treatment, as well as dying from unrelated causes. That would skew the numbers a lot.
Besides myself, I know 3 other multiple myeloma patients. I'm the newcomer at 2 and half years since diagnosis. But the other three are between 5-8 years post diagnosis and we are all doing fine.
Since the average age of diagnosis is late 60's, that would mean a lot of people in their 80's are also diagnosed. I imagine their life expectancy would be much shorter due to not tolerating treatment, as well as dying from unrelated causes. That would skew the numbers a lot.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Life Expectancy
I am in my seventh year of treatment. I have had SCT several times and not CR but low numbers.. Had lengthy periods of Dexamethasone, no fun there, but it works. I bought a new car when diagnosed and said it was my last car. Now the car is worn and need a new one. I'm buying one that can last a long time as I now know I will need it. Next month I will be 68 and look forward to many years with all the new advances in treatment and novel agents.
Be positive as the future for you is much better than you think!
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turbineman - Name: Hugh
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Jan 2006
- Age at diagnosis: 61
Re: Life Expectancy
I was diagnosed with this disease, this month makes 5 years. I go through chemo about once a year, which I am very happy with that! I have NOT had a bone marrow transplant. I decided myself not to do that, even though the doctors told me that I would die within 6 months if I didn't get it done. I prayed about it and just felt that it was not necessary at this time. I do the Revelimid and steriods in a pattern of 21 days of 25mg of Revlimid and 10 steriods once a week during the 21 days. I get one week off and then do another 21 days of 10 mg of Revlimid and the 10 steriods once a week. I have had several issues, with my back, my leg and my ribs. But when that happens, I just go on my treatment and usually after my two 21 day cycle I start feeling much better within two weeks. I think with any type of disease, it varies in the individual. The one thing that has made a difference with me is that I do believe in God and I believe in miracles. I am not willing to give up. I go to work every day and try to be positive with my situation. There is a reason and I want to be a testimony to those around me that no matter what I will stay a positive person and just be happy that I am here! All I can tell you is stay positive. Sometimes it will get rough, but just stay positive! God bless and hope all goes well!
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michellelavon
Re: Life Expectancy
This is the silver lining that I have been looking for!!!!! I feel relieved to have read so many success stories. My husband was diagnosed at the age of 40 two years ago. Revl. and dex. put him in remission for about 18 months. He has relapsed. Our biggest mistake was not seeing a myeloma specialist. We knew nothing about prognostic factors, etc. We are now seeing a myeloma specialist at MD Anderson and we finally feel we are in good hands. Its amazing that by reading these posts, I can plan for the future with my husband. Many nights, I'd go to bed crying after reading those grim statistics on the internet. Now I know that we have a pretty darn good chance of controlling this beast for a long, long time. Thanks to everyone for sharing your stories.
Katie
Katie
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Kate
Re: Life Expectancy
Hi,
My husband has been diagnosed with multiple myeloma 4 months ago. He has Igd heavy chain and Kappa and lambda light chains. After 4 months of Velcade/dexamethasone he will under go ASCT. What would be his prognosis considering that he has a rare type myeloma.
I would appreciate your comments.
Thanks a lot.
Rama
My husband has been diagnosed with multiple myeloma 4 months ago. He has Igd heavy chain and Kappa and lambda light chains. After 4 months of Velcade/dexamethasone he will under go ASCT. What would be his prognosis considering that he has a rare type myeloma.
I would appreciate your comments.
Thanks a lot.
Rama
Re: Life Expectancy
As you can see the wide variety of posts and the differences in survival that it is difficult to truly prognosticate on overall survival of patients. As suzierose outlined our a priori risk stratifying categories involve a number of factors.
The ISS (international staging system) staging I, II, III (a staging system based on levels of albumin and beta microglobulin) is prognostic and the published median overall survivals are as she attested to. I do believe that we do better that 5 year (62months) median overall survival with novel agents, comtemporary management stratigies, and clinical trials.
The genetic aspects of the tumor (myeloma) cells themselves must also be taken in to account and help define risk (traditionally high risk vs standard risk). High Risk being defined as deletion of chromosome 17p, t(4;14), t(14;16), t(14;20), deletion of 13q (by metaphase cytogenetic), addition of chromosome 1q21.
Standard risk as defined by t(11;14), deletion 13p by FISH, hyperdiploidy (extra copies of chromosomes).
More recently a 70 gene RNA expression array (MyPRS) has become commerically available that also defines risk. There are other features that have been examined as well. Patients with high risk disease generally reach the same long-term control. Some of these risk factors can be overcome with current therapy.
Generally speaking today we state that the median overall survival for most patients (enriched in the standard risk populations) is pushing 6-8 years. This relative to a decade ago when the median overall survival was 2-3 years. But as many Beacon readers know, everyone's disease is a bit different as is everyone's response and overall survival. We as your physicians are to help pick the best management strategy we can to maximized your quantity of life and quality of life. This frequently requires sequential managements strategies.
As you have read in this post there are rare instances of long-term survivors - and continued success to all of those individuals. One must, in my opinioin, be very careful describing myeloma as a curable disease. It is a treatable disease that we strive to make as chronic (and potentially curable) disease everyday. And we do so with the effort and sacrifce of patients and their families and friends through clinical trials and the like.
Best of luck
The ISS (international staging system) staging I, II, III (a staging system based on levels of albumin and beta microglobulin) is prognostic and the published median overall survivals are as she attested to. I do believe that we do better that 5 year (62months) median overall survival with novel agents, comtemporary management stratigies, and clinical trials.
The genetic aspects of the tumor (myeloma) cells themselves must also be taken in to account and help define risk (traditionally high risk vs standard risk). High Risk being defined as deletion of chromosome 17p, t(4;14), t(14;16), t(14;20), deletion of 13q (by metaphase cytogenetic), addition of chromosome 1q21.
Standard risk as defined by t(11;14), deletion 13p by FISH, hyperdiploidy (extra copies of chromosomes).
More recently a 70 gene RNA expression array (MyPRS) has become commerically available that also defines risk. There are other features that have been examined as well. Patients with high risk disease generally reach the same long-term control. Some of these risk factors can be overcome with current therapy.
Generally speaking today we state that the median overall survival for most patients (enriched in the standard risk populations) is pushing 6-8 years. This relative to a decade ago when the median overall survival was 2-3 years. But as many Beacon readers know, everyone's disease is a bit different as is everyone's response and overall survival. We as your physicians are to help pick the best management strategy we can to maximized your quantity of life and quality of life. This frequently requires sequential managements strategies.
As you have read in this post there are rare instances of long-term survivors - and continued success to all of those individuals. One must, in my opinioin, be very careful describing myeloma as a curable disease. It is a treatable disease that we strive to make as chronic (and potentially curable) disease everyday. And we do so with the effort and sacrifce of patients and their families and friends through clinical trials and the like.
Best of luck
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Life Expectancy
Hi I've been reading the replys of those who have answered this and am struck by the relatively young age of some of you folks (40's), makes me wonder what is happening to us that so many younger people are coming down with this disaster of a disease - is it the enviroment we live in ?, I would be interested in seeing a comparison of percentage of people with multiple myeloma compared to the total population by country around the World . In my case it is speculated that my exposure to Herbicides in the 60's may well be the cause , my original Oncologist who originally lived in Bellerous was living down wind from Chernoble when it melted down he came down with multiple myeloma -he is no longer with us after having a failed bone marrow transplant , Concerning my own longivety I was Dia. in 2004 and recieved 10 months of treatment with Thalidomide & Dex -never had a stem cell xplant and my current Oncologist say's according to my tests I may never need one, I've had no further treatments for multiple myeloma to this point , Blood Presure is difficult to control ,My kidneys are some what weakened but still functioning , I do get leg swelling etc. & feet & back are in real poor condition,making walking a real chore but I can do ok for short distances but still looking fwd to every morning just like when I was 20 years old . best of luck to you all and God Bless N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66