Hi Dorothy
You've done amazingly well! As I asked Dan, do you mind telling us what myeloma type you have?
Alice
Forums
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Myeloma Beacon is an amazing resource!
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Hi Alice,
I have IgG kappa type myeloma, but being diagnosed such a long time ago (2005), I don't have any additional information about my genetic profile. I would say, however, that I seem to be susceptible to rare cancers, having also had a very rare form of skin cancer which was successfully treated back in 1994.
Hopefully my long period of remission will help others to stay positive.
I have IgG kappa type myeloma, but being diagnosed such a long time ago (2005), I don't have any additional information about my genetic profile. I would say, however, that I seem to be susceptible to rare cancers, having also had a very rare form of skin cancer which was successfully treated back in 1994.
Hopefully my long period of remission will help others to stay positive.
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Dorothy
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Thanks for your kind words about The Beacon, Cathy (antelope1225). We appreciate the feedback!
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Dorothy, there is evidence in non transplant patients for very long survivors. While less common, it certainly occurs.
I wish you the best,
Jlk
I wish you the best,
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Thank you, doctor. That's heartening.
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Dorothy
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
This is ALL very heartening, thank you. It seems easier to hope for something that has been attained without a full-blown miracle. i know, I need more faith!
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
It is a little early for me to formulate a truly intelligent opinion but, I am getting an attitude. I figured out that life is kind of like a horse race. You don't know for sure which one will cross the line first until it is over. Sometimes medical science just keeps us going long enough for something else to get us instead of the thing we are worrying about the most. Statistically, how many cancer patients have died in car accidents on the way to or from treatment?? There is always something to worry about if you allow it.
I have just started treatment and the doc is upbeat so far. I am not yet afraid to buy green bananas. For a day or two after chemo, I have to get through a rough patch, but then things get near normal again. If I were to achieve a near normal life afterward, it would be the lack of unpleasant side effects that mattered more than the extra time I would get.
I used to look at all the life expectancy figures from different people and try to work out an average without thinking about what else might be out there. That kind of thinking can make your head explode. Just learn how to deal with what you have instead of worrying about what is normal. Normal for one person may be a living hell for another.
I am not a strongly religious person, but I do believe there is a higher power. As I said in another post, I think God hears all prayers, but he has a huge "IN" box.
I see a lot of folks on these pages are much younger than I. I feel truly sorry for them and can see why a long, normal life expectancy is important to them. They would surely have a different outlook than someone like me. God must like me, He has already let me live twice as long as Jesus but, I may not get to come back again. I am not brave. I am just hard headed.
I have been through a lot of medical problems in the last decade, some of which could have taken me out but did not, I was in pretty bad shape several times and through luck, divine intervention, or something like it., I beat the odds. So, now I am now more concerned about the quality of the days I have left instead of their total count. That is my definition of a normal life.
Death is inevitable but the dying itself might be real hard part. If things get too bad I would like to be able to reach up and flip a switch. When the time comes, and it will come, we all want to go easy.
It is all too easy to get cynical. The bad days should make us appreciate the good ones even more. So they serve a purpose too. An incurable condition just assures you that if nothing else gets you first, it will. Kind of like the family dog waiting for the leftovers.
As for what happens after this life is over, I kind of figure I won't go to hell, but I may be that last guy out of purgatory. Hey Charlie, don't forget to feed Cerberus and turn out the lights.
In closing, hope for the best but don't count on it. Just learn how to deal with each day as it comes and try to do what you want whenever you can and take whatever pleasure you can.
Charlie, (grouchy German)
I have just started treatment and the doc is upbeat so far. I am not yet afraid to buy green bananas. For a day or two after chemo, I have to get through a rough patch, but then things get near normal again. If I were to achieve a near normal life afterward, it would be the lack of unpleasant side effects that mattered more than the extra time I would get.
I used to look at all the life expectancy figures from different people and try to work out an average without thinking about what else might be out there. That kind of thinking can make your head explode. Just learn how to deal with what you have instead of worrying about what is normal. Normal for one person may be a living hell for another.
I am not a strongly religious person, but I do believe there is a higher power. As I said in another post, I think God hears all prayers, but he has a huge "IN" box.
I see a lot of folks on these pages are much younger than I. I feel truly sorry for them and can see why a long, normal life expectancy is important to them. They would surely have a different outlook than someone like me. God must like me, He has already let me live twice as long as Jesus but, I may not get to come back again. I am not brave. I am just hard headed.
I have been through a lot of medical problems in the last decade, some of which could have taken me out but did not, I was in pretty bad shape several times and through luck, divine intervention, or something like it., I beat the odds. So, now I am now more concerned about the quality of the days I have left instead of their total count. That is my definition of a normal life.
Death is inevitable but the dying itself might be real hard part. If things get too bad I would like to be able to reach up and flip a switch. When the time comes, and it will come, we all want to go easy.
It is all too easy to get cynical. The bad days should make us appreciate the good ones even more. So they serve a purpose too. An incurable condition just assures you that if nothing else gets you first, it will. Kind of like the family dog waiting for the leftovers.
As for what happens after this life is over, I kind of figure I won't go to hell, but I may be that last guy out of purgatory. Hey Charlie, don't forget to feed Cerberus and turn out the lights.
In closing, hope for the best but don't count on it. Just learn how to deal with each day as it comes and try to do what you want whenever you can and take whatever pleasure you can.
Charlie, (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
Nice post Grizlump.
I'd also add that, like it or not, some of our peers who do not have multiple myeloma will die sooner than many of us. That does sound morbid, but it also tells me to not worry too much about life expectancy ... or worry less about it.
When I was first diagnosed, a women friend of mine was too freaked out to even say hi to me anymore. 2 years later, she got ovarian cancer and died. The neighbors' son died in a car crash. Not sure where I'm going with this other than, don't be so sure multiple myeloma is going to be the thing that gets you. Don't forget to take care of other parts of your body while dealing with multiple myeloma.
I'd also add that, like it or not, some of our peers who do not have multiple myeloma will die sooner than many of us. That does sound morbid, but it also tells me to not worry too much about life expectancy ... or worry less about it.
When I was first diagnosed, a women friend of mine was too freaked out to even say hi to me anymore. 2 years later, she got ovarian cancer and died. The neighbors' son died in a car crash. Not sure where I'm going with this other than, don't be so sure multiple myeloma is going to be the thing that gets you. Don't forget to take care of other parts of your body while dealing with multiple myeloma.
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stann
Re: Is normal life expectancy possible after multiple myeloma diagnosis?
It's great to be upbeat, and I am, but for those of us in our 30's, living with young people with this disease, time is everything. Every freaking extra minute I get with my husband – and my 2 year old and 1 year old get with their Daddy – is important to me.
I love LOVE love hearing of people surviving more than 5 or 10 years. 10 years makes my husband 47. I'm not ready to call it quits with him at 47. So, I'll keep hoping for more time.
I love LOVE love hearing of people surviving more than 5 or 10 years. 10 years makes my husband 47. I'm not ready to call it quits with him at 47. So, I'll keep hoping for more time.
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ilovemc - Name: ilovemc
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 2014
- Age at diagnosis: 38