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Re: Is normal life expectancy possible after multiple myelom
I have just been diagnosed with multiple myeloma. I am in the early stages and have not started treatment. What is the life expectancy for this type of cancer?
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Ronald
Re: Is normal life expectancy possible after multiple myelom
I don't think anyone can predict that, but life expectancies have gone up considerably in the law few years due to novel drugs coming onto the market.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Is normal life expectancy possible after multiple myelom
My son was diagnosed in 2015 at the age of 39. He did several rounds of treatment, and then last year an autologous stem cell transplant. It did not work, and now he is being prepared for an allogeneic transplant..He has a twin brother. His myeloma is nonsecretory, and at 90% percent in his bones. Next week he goes into the hospital for a strong chemo treatment to try to bring it down so he can have the transplant. We are hopeful.
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sis
Re: Is normal life expectancy possible after multiple myelom
Every patient is different. Some are standard risk and some are high risk. Myeloma is not a single form of cancer but is varied and diverse.
Having said all of that, 20 years ago most patients when diagnosed lived 3-5 years on average with the disease. The treatment options were very limited compared to today. Now it is more common to see patients live 7-10 years and as you will note much longer. It is still considered an incurable form of cancer and is not yet a chronic disease that is controlled through medications like diabetes. However, life expectancy is increasing, and new developments in treatment have been amazing during the last 5 years.
Having said all of that, 20 years ago most patients when diagnosed lived 3-5 years on average with the disease. The treatment options were very limited compared to today. Now it is more common to see patients live 7-10 years and as you will note much longer. It is still considered an incurable form of cancer and is not yet a chronic disease that is controlled through medications like diabetes. However, life expectancy is increasing, and new developments in treatment have been amazing during the last 5 years.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Is normal life expectancy possible after multiple myelom
Life expectancy is so dependent upon our specific conditions, prior to the disease being discovered, how we react to the treatments, and how we choose to live afterwards, that no one answer is right. In my case, it's a very positive answer, but we caught my multiple myeloma very early and before it could do much damage to my bones and other organs.
My philosophy is that I will personally fight this condition the same way I was fighting aging before the cancer was discovered. Stay fit, stay active, plan for a long future and prepare for a short one. I was diagnosed within a month of the median age for all multiple myeloma patients, just before I turned 56, and I am now 7 months post stem cell transplant and planning on a century bike ride (100 mile), in September and a half marathon (13.1 miles), in November of 2018.
I was very fit and training for a big race before I was diagnosed, and that fitness helped me get through the initial treatment regimen and the stem cell transplant with a minimum amount of problems. I also recovered faster than expected (per my oncologist); my immune system was declared to be "normal" in March, less than 6 months after my transplant.
My advice is to move. Walk, bike, stroll, run, swim, hike, climb, etc. Moving gets all the systems flowing, growing, and doing what its supposed to do. It tells our body that it still has a function, that it's not time to die, there is more to accomplish. Also, every mile I run and ride is me flipping the bird at multiple myeloma and screaming at it: I am not done with life and YOU aren't the boss of me!
Its not as easy as it was before I was diagnosed, it hurts to run due to peripheral neuropathy in my feet, and my endurance is improving very slowly. The maintenance therapy (Revlimid) is a factor as well as it fogs my thinking and makes it more dangerous to ride my bike with a group.
Those are just hoops to jump through, not walls that cannot be broken through. The pain in my feet abates after a few minutes of running, and I have learned to love riding alone, lost in my own head and not worrying about who is crossing my wheel or not holding their line in a corner. Things are different, but I am learning to love the challenges that this disease has inflicted.
If your going through Hades, you might as well do some damage while your there and fight your way out!
My philosophy is that I will personally fight this condition the same way I was fighting aging before the cancer was discovered. Stay fit, stay active, plan for a long future and prepare for a short one. I was diagnosed within a month of the median age for all multiple myeloma patients, just before I turned 56, and I am now 7 months post stem cell transplant and planning on a century bike ride (100 mile), in September and a half marathon (13.1 miles), in November of 2018.
I was very fit and training for a big race before I was diagnosed, and that fitness helped me get through the initial treatment regimen and the stem cell transplant with a minimum amount of problems. I also recovered faster than expected (per my oncologist); my immune system was declared to be "normal" in March, less than 6 months after my transplant.
My advice is to move. Walk, bike, stroll, run, swim, hike, climb, etc. Moving gets all the systems flowing, growing, and doing what its supposed to do. It tells our body that it still has a function, that it's not time to die, there is more to accomplish. Also, every mile I run and ride is me flipping the bird at multiple myeloma and screaming at it: I am not done with life and YOU aren't the boss of me!
Its not as easy as it was before I was diagnosed, it hurts to run due to peripheral neuropathy in my feet, and my endurance is improving very slowly. The maintenance therapy (Revlimid) is a factor as well as it fogs my thinking and makes it more dangerous to ride my bike with a group.
Those are just hoops to jump through, not walls that cannot be broken through. The pain in my feet abates after a few minutes of running, and I have learned to love riding alone, lost in my own head and not worrying about who is crossing my wheel or not holding their line in a corner. Things are different, but I am learning to love the challenges that this disease has inflicted.
If your going through Hades, you might as well do some damage while your there and fight your way out!
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Is normal life expectancy possible after multiple myelom
I was diagnosed last year at age 79. The projected life span for me with multiple myeloma is 35% of making it five years. With no limiting factors, like cancer, the projection is seven years, but:
- I have emphysema because I smoked for 30 years, even tho' I quit some 35 years ago:
- I have coronary artery disease and a stent, maybe because I love bacon too much;
- I have a bad back due to early years as a warehouse worker in a nuts and bolts workplace;
- Three out of four grandparents died of cancer, the fourth of alcoholism (two of the cancers were alcohol-related);
- I drank alcoholically for over 30 years, sober now almost 30, and both parents were alcoholics;
- I worked at a high stress job for 21 years;
- Did a lot of stupid things when I was younger, because when we are young we are immortal.
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albertlannon - Name: Albert Lannon
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June, 2017
- Age at diagnosis: 79
Re: Is normal life expectancy possible after multiple myelom
Doug,
Thank you for the post. In it I find a kindred spirit.
Thank you for the post. In it I find a kindred spirit.
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: Is normal life expectancy possible after multiple myelom
Doug,
What you said. Every single word.
After 6 months of living with my diagnosis, and headed in for an autologous stem cell transplant on Tuesday, all I can say is that you have to figure out what you can control and take every step possible to do those things.
I would only add how important it is to take every pill, make every appointment, and become informed about and engaged in your treatment. Be a partner not a patient.
I'm 54 and my quick response to my treatment regimen (Velcade, cyclophosphamide, and dexamethasone), and the fact that I have had no kidney damage or bone damage of any significance, give me a great deal of hope to get 10 or 20 years or more. Plus, as others have said, the advances in multiple myeloma treatment are coming fast and furious. It would not surprise me in 5 or 10 years to see multiple myeloma become a chronic disease like diabetes. In the meantime, we all need to do the things we can do to ensure that we get to that day.
Flipping multiple myeloma the bird is my hobby these days.
Steve
What you said. Every single word.
After 6 months of living with my diagnosis, and headed in for an autologous stem cell transplant on Tuesday, all I can say is that you have to figure out what you can control and take every step possible to do those things.
I would only add how important it is to take every pill, make every appointment, and become informed about and engaged in your treatment. Be a partner not a patient.
I'm 54 and my quick response to my treatment regimen (Velcade, cyclophosphamide, and dexamethasone), and the fact that I have had no kidney damage or bone damage of any significance, give me a great deal of hope to get 10 or 20 years or more. Plus, as others have said, the advances in multiple myeloma treatment are coming fast and furious. It would not surprise me in 5 or 10 years to see multiple myeloma become a chronic disease like diabetes. In the meantime, we all need to do the things we can do to ensure that we get to that day.
Flipping multiple myeloma the bird is my hobby these days.
Steve
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: Is normal life expectancy possible after multiple myelom
One of my favorite authors (that most of you have never heard of) had one of her characters, one who was constantly getting into and out of difficult situations, say this:
"If you have to cross thin ice, do it in a dance."
Well, seems to me that multiple myeloma is mighty thin ice. Yes, we have to deal with it, but why not 'do it in a dance?"
We have to deal with it anyway.
"If you have to cross thin ice, do it in a dance."
Well, seems to me that multiple myeloma is mighty thin ice. Yes, we have to deal with it, but why not 'do it in a dance?"
We have to deal with it anyway.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Is normal life expectancy possible after multiple myelom
Doug, you and Dianaiad and I share a similar philosophy. You may find my thread on biking with myeloma of interest.
"Biking with multiple myeloma" (started April 19, 2012)
I have had this disease for 9 1/2 years so far. I also had a heart valve replaced 3 years ago and broke my neck in a biking accident 1 1/2 years ago resulting in vertebrae C-1 through C-4 being fused. Despite all of that, I have logged in just under 2,000 miles so far this year. I had a 5 hour IVIG infusion, Velcade shot, and took 20 mg of dex on Wednesday but plan to do a 50+ plus mile ride tomorrow and a 30 mile ride on Sunday. I have learned to cope – work around treatments and these other issues. We can let it get us down or take it as a challenge and, as Dianaiaid said: dance.
"Biking with multiple myeloma" (started April 19, 2012)
I have had this disease for 9 1/2 years so far. I also had a heart valve replaced 3 years ago and broke my neck in a biking accident 1 1/2 years ago resulting in vertebrae C-1 through C-4 being fused. Despite all of that, I have logged in just under 2,000 miles so far this year. I had a 5 hour IVIG infusion, Velcade shot, and took 20 mg of dex on Wednesday but plan to do a 50+ plus mile ride tomorrow and a 30 mile ride on Sunday. I have learned to cope – work around treatments and these other issues. We can let it get us down or take it as a challenge and, as Dianaiaid said: dance.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56