My understanding after over three years of intimate involvement with myeloma is that, absent a real cure in the near future, normal life expectancy is possible, but unlikely. I speak only of young patients such as myself. I was diagnosed at 37 with 80% bone involvement. You can somewhat increase your chances by educating yourself and making, at least theoretically, the right choices. Aside from that, the name of the game is luck, theory of probability, or whatever you call it. That little part of life that makes you an outlier, a winner against the odds. I approach my life having this in mind. Hope is great but I’d take realism every day. In fact being realistic about my prospects is what helps me have a more meaningful life, whatever I have left.
Other than that, I have a 5 year-old son. My dream is to see him be his own man, and a good man at that. If I can't hold on that long, I'd be happy to see him grow into his teens. Good luck to you all.
Forums
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
My take on this, given the pace of research into myeloma therapy, is that, if you can make it another ten years in reasonably good shape, then there will likely be therapies that will get you a further ten years. And after that, hopefully, something that for all intents and purposes, is a cure. At least, that's what I am hoping for.
That's not going to help all of us, by any means, and we'll continue to lose good people to this disease. But for those who are younger, responding well to current treatments, and otherwise healthy, I have to think it's not unlikely.
That's not going to help all of us, by any means, and we'll continue to lose good people to this disease. But for those who are younger, responding well to current treatments, and otherwise healthy, I have to think it's not unlikely.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
I was just diagnosed with smoldering myeloma a couple of weeks ago and it's been hard for me to think positively about the future since then. This morning, it just dawned on me: "I'm 44 and I was just diagnosed with cancer. Why should I even bother continuing to save for retirement?"
Obviously, no one can tell me how long I will be in the smoldering phase, but I find it hard to believe that it will be for another 10 years, so I will be starting treatment before I'm 50 most likely.
Are recent advances so promising that I can hope to live past 67 at this point?
Obviously, no one can tell me how long I will be in the smoldering phase, but I find it hard to believe that it will be for another 10 years, so I will be starting treatment before I'm 50 most likely.
Are recent advances so promising that I can hope to live past 67 at this point?
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
FingersCrossed,
You might want to consider registering (anonymously) and logging in so that folks can easily see your other posts on your particular situation as they respond to you.
You might want to consider registering (anonymously) and logging in so that folks can easily see your other posts on your particular situation as they respond to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Multibilly wrote:
Done!
A quick summary of my situation:
I'm 44 years old, diagnosed with smoldering myeloma a few weeks ago (IgG Kappa). Otherwise, in good health. I work out 6 days a week -- strength and cardio -- and I follow a healthy diet.
Plasma cells: 10-15%
M-spike: 1.9 g/dL
IgG: 2411 mg/dL, M and A levels are normal
Beta 2 micro: 1.47 mg/L
K/L ratio: 2.07
Kappa FLC: 18.8 mg/L
Lambda FLC: 9.1 mg/L
I got a hold of my bone marrow biopsy report.
17p deletion: 5% abnormal
t(11;14): 9% abnormal
Multiple copies of some other chromosones. The rest of the FISH tests came back normal.
From what I've read so far, some of these triple copies of other chromosomes can help negate the 17p deletion.
Any hope for me?
FingersCrossed,
You might want to consider registering (anonymously) and logging in so that folks can easily see your other posts on your particular situation as they respond to you.
Done!
A quick summary of my situation:
I'm 44 years old, diagnosed with smoldering myeloma a few weeks ago (IgG Kappa). Otherwise, in good health. I work out 6 days a week -- strength and cardio -- and I follow a healthy diet.
Plasma cells: 10-15%
M-spike: 1.9 g/dL
IgG: 2411 mg/dL, M and A levels are normal
Beta 2 micro: 1.47 mg/L
K/L ratio: 2.07
Kappa FLC: 18.8 mg/L
Lambda FLC: 9.1 mg/L
I got a hold of my bone marrow biopsy report.
17p deletion: 5% abnormal
t(11;14): 9% abnormal
Multiple copies of some other chromosones. The rest of the FISH tests came back normal.
From what I've read so far, some of these triple copies of other chromosomes can help negate the 17p deletion.
Any hope for me?
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
FC,
First, many thanks for registering/loggin-on. This makes it easier for everyone when responding.
Given that you are smoldering, I would be personally planning for retirement (I am 57 and I'm behaving and planning as if I will live well into my 80's).
Why do I say this?
1. You are smoldering and it is not a given that you will progress to symptomatic multiple myeloma, so that is a big advantage for you. There hasn't been a study yet with a reasonably sized group of people that demonstrates that 17p- increases one's risk of progression and there is certainly no study that shows that it is a given that 17p- patients will progress to symptomatic multiple myeloma.
"Chromosomal Abnormalities May Identify Smoldering Myeloma Patients At Higher Risk of Progression," The Myeloma Beacon, Mar 29, 2013.
2. In the short term, there are newer drugs coming out and in trial that show specific promise for being able to deal specifically with 17p- more effectively (Ibrutinib, etc).
3. While there may not be a complete multiple myeloma "cure" in the next 10 years, I personally believe that there is a lot of realistic hope that with all the new drugs and approaches in the pipeline that one will be able to better manage multiple myeloma as a long-term chronic condition for many years and with less side effects. And at some point in time there will be something approaching a cure.
To date, we've been living with alkylators, IMiDs and proteasome inhibitors. But there are altogether new approaches on the near horizon such as monoclonal antibodies, HDAC inhibitors, CAR T-Cell immunotherapy, meditope-based approaches, vaccines (including vaccine trials for smoldering patients such as the PVX-410 trial), etc that are all showing interesting promise. And, of course there is also the allo transplant approach, which can potentially deliver a cure today.
My specialist is quite good at always reminding me of the promising research and drugs in the pipeline whenever I see him. So, while I try to be realistic about all this (in my case, this means planning for the possibility that I might progress and require treatment ... and also getting my estate plans in order), I am also quite hopeful about my prospects given what treatments are in the pipeline.
Looking forward in time, it's a different ballgame for multiple myeloma patients than it was just 5 years ago.
First, many thanks for registering/loggin-on. This makes it easier for everyone when responding.
Given that you are smoldering, I would be personally planning for retirement (I am 57 and I'm behaving and planning as if I will live well into my 80's).
Why do I say this?
1. You are smoldering and it is not a given that you will progress to symptomatic multiple myeloma, so that is a big advantage for you. There hasn't been a study yet with a reasonably sized group of people that demonstrates that 17p- increases one's risk of progression and there is certainly no study that shows that it is a given that 17p- patients will progress to symptomatic multiple myeloma.
"Chromosomal Abnormalities May Identify Smoldering Myeloma Patients At Higher Risk of Progression," The Myeloma Beacon, Mar 29, 2013.
2. In the short term, there are newer drugs coming out and in trial that show specific promise for being able to deal specifically with 17p- more effectively (Ibrutinib, etc).
3. While there may not be a complete multiple myeloma "cure" in the next 10 years, I personally believe that there is a lot of realistic hope that with all the new drugs and approaches in the pipeline that one will be able to better manage multiple myeloma as a long-term chronic condition for many years and with less side effects. And at some point in time there will be something approaching a cure.
To date, we've been living with alkylators, IMiDs and proteasome inhibitors. But there are altogether new approaches on the near horizon such as monoclonal antibodies, HDAC inhibitors, CAR T-Cell immunotherapy, meditope-based approaches, vaccines (including vaccine trials for smoldering patients such as the PVX-410 trial), etc that are all showing interesting promise. And, of course there is also the allo transplant approach, which can potentially deliver a cure today.
My specialist is quite good at always reminding me of the promising research and drugs in the pipeline whenever I see him. So, while I try to be realistic about all this (in my case, this means planning for the possibility that I might progress and require treatment ... and also getting my estate plans in order), I am also quite hopeful about my prospects given what treatments are in the pipeline.
Looking forward in time, it's a different ballgame for multiple myeloma patients than it was just 5 years ago.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Thanks, Multibilly,
Not meaning to take this thread off-topic at all, but is there any importance attached to the %s given in FISH tests? For example, my 17p result says "5% abnormal" compared to some of the trisomies that say "9% abnormal" or some other number. Does that mean anything?
Not meaning to take this thread off-topic at all, but is there any importance attached to the %s given in FISH tests? For example, my 17p result says "5% abnormal" compared to some of the trisomies that say "9% abnormal" or some other number. Does that mean anything?
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
FC,
I'm not qualified to answer the question on percentages. Suggest you chat that over with your doc...or perhaps somebody else on this forum might chime in here.
I'm not qualified to answer the question on percentages. Suggest you chat that over with your doc...or perhaps somebody else on this forum might chime in here.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
My husband has had quite the ride - severe bone involvement including a pelvic fracture, DVT, and, although he's had an outstanding response to chemo, with his monoclonal protein down to 0.5 g/L, the chemo seems to have caused lung scarring and he's at about 50% lung function. That discovery has him on prednisone and doing pulmonary rehab, and while his cells were collected for transplant, he's not likely to ever have that transplant because of the risk of additional lung damage.
He's starting to walk without support. He's off all the pain meds. He's eating normally. His breathing is better.
And, as far as we're concerned, we're going to damn well enjoy every day in front of us. If we get the all clear from the doctors on Monday, I'm booking us to London for a short trip. We know the city well, it's got great public transit, and we can have a much needed good time. If he does well with that and has fun, he has a little list of places
We'll start booking trips.
Who knows what his life expectancy actually is, but we do know that, if we don't get back to living the life we want, it hardly matters. It would be so easy to stay home and wrap our lives around dealing with the cancer, but then cancer wins. We'll do all the things we need to do to get my husband well, but whether he's got 10 months or 20 years, we intend to enjoy them.
He's starting to walk without support. He's off all the pain meds. He's eating normally. His breathing is better.
And, as far as we're concerned, we're going to damn well enjoy every day in front of us. If we get the all clear from the doctors on Monday, I'm booking us to London for a short trip. We know the city well, it's got great public transit, and we can have a much needed good time. If he does well with that and has fun, he has a little list of places
We'll start booking trips.Who knows what his life expectancy actually is, but we do know that, if we don't get back to living the life we want, it hardly matters. It would be so easy to stay home and wrap our lives around dealing with the cancer, but then cancer wins. We'll do all the things we need to do to get my husband well, but whether he's got 10 months or 20 years, we intend to enjoy them.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Great attitude Lisa! Enjoy London.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012