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Are you beating the odds? 10 years+ since diagnosis?
If you read everything online, you would think that multiple myeloma is the worst prognosis ever. I know that reading throughout the site, there have been some proud survivors - winners. I think it would be great for you to share your story - from diagnosis to today (briefly) so others can feel encouraged (including us caretakers).
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Are you beating the odds? 10 years+ since diagnosis?
I just celebrated my 13th anniversary of my first stem cell transplant 
I was diagnosed in January 2000, with multiple myeloma and amyloidosis of the kidney. First transplant was Sept. 2000, and I had a second one in 2004, when the amyloidosis acted up.
I have been in remission ever since with no maintenance drugs, and this year the doctors put me on a 6 month checkup schedule (instead of every 3 months that I had been doing for years). I did have to retire from working due to ongoing fatigue issues, but that allows me to keep my own schedule according to how I feel.
Long remissions ARE possible, and all of the newer treatments available should make that a reality for more multiple myeloma patients.
I still think about relapse that could happen at anytime, but for now I am just so thankful for all of these years I have been given.
I was diagnosed in January 2000, with multiple myeloma and amyloidosis of the kidney. First transplant was Sept. 2000, and I had a second one in 2004, when the amyloidosis acted up. I have been in remission ever since with no maintenance drugs, and this year the doctors put me on a 6 month checkup schedule (instead of every 3 months that I had been doing for years). I did have to retire from working due to ongoing fatigue issues, but that allows me to keep my own schedule according to how I feel.
Long remissions ARE possible, and all of the newer treatments available should make that a reality for more multiple myeloma patients.
I still think about relapse that could happen at anytime, but for now I am just so thankful for all of these years I have been given.
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janner - Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2000
- Age at diagnosis: 47
Re: Are you beating the odds? 10 years+ since diagnosis?
Hello, I was diagnosed in June of 2000 with smoldering multiple myeloma. 2001 my numbers went up and I was prepared for a stem cell transplant in September 2001. Although I am NO longer in remission my numbers are still low and I chose NO meds after the transplant. I had and still have no lesions and see my oncologist every 3 to 4 months. I do feel fine and take the best care of myself and husband. We run an multiple myeloma support group in Florida.
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Ronnie
Re: Are you beating the odds? 10 years+ since diagnosis?
I can't recount 10 years, 4+ for me, but I can make a comparison. My sister, 2 years my Junior, was diagnosed in '95. She not only suffered with it, broken hip, she made a steady decline. She didn't have PET scans, Velcade, or SCT to help her fight it.
My point is that today all of us fighting the disease can be thankful for research and and availability of advanced care. Perhaps are progeny will see a vaccine for those at high risk according to their genes?
My point is that today all of us fighting the disease can be thankful for research and and availability of advanced care. Perhaps are progeny will see a vaccine for those at high risk according to their genes?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Are you beating the odds? 10 years+ since diagnosis?
Hello,
I am a long term survivor of myeloma and AL (amyloidosis). I was diagnosed at age 29 in 1987 (please don't do the math ) because my cholesterol went through the roof. I was in nephrotic syndrome. It took 3 months for the diagnosis and I was given only 6 months prognosis. Amyloid was found in every organ they tested including my kidneys, heart, spleen, GI track and skin/fat. Back then there was not treatment that worked and the best we hoped for was to slow it down.
I went to MD Anderson and saw Dr. Barlogie who is now head of the Little Rock group. He was the first person who said he thought "we can beat this thing". We did 4 courses of VAD [vincristine, Adriamycin (doxorubicin), and dexamethasone] treatment, which put me into remission and froze BM cells for a transplant. The old VAD treatments had you wear a chemo pump for 4 days of continuous treatment. Dr. B's thinking was since myeloma is such a slow growing disease you need to expose the cells for a long time but a lower doses which reduced the side-effects.
Back then SCTs were experimental with ~40% dying from the treatments, so I wanted to wait. Then Sloan Kettering published their M2 protocol and I talked him into putting me on that for another 6 months even though I was technically in remission. That protocol included interferon which I stayed on as maintenance for the next 12 years or so. Over time even my amyloid resolved so that my kidneys and heart returned almost to normal and I just got on with my life. This first remission lasted 25 years in total but I relapsed about 18 months ago.
I went on CyBorD (Cytoxan, bortezomib [Velcade], dexamethasone) with Dr. Stewart here in Mayo for about a year which slowly lowered my FLCs to just about normal- a VGPR. Now on a maintenance on bortezomib, lower dex and thalidomide hoping to get my counts completely normal. I have plenty of peripheral stem cells frozen down for a transplant if I need it. My disease may be different than many and we are hoping that these new drugs available today will last a long time.
I have been fortunate to have the very best doctors who I trust and who respect me enough to include me in the treatment decisions. This is probably the best advice I can give other patients. Find the best doctors you can who also allow you to be an active member of your own treatment team.
With the new advances things are much better today then they were for me in 1987 and will only get better in the future. I think we every day we stay alive our chances of beating this things only gets better.
All my best to everyone on this forum, whether patients or caregivers. Dan
I am a long term survivor of myeloma and AL (amyloidosis). I was diagnosed at age 29 in 1987 (please don't do the math
) because my cholesterol went through the roof. I was in nephrotic syndrome. It took 3 months for the diagnosis and I was given only 6 months prognosis. Amyloid was found in every organ they tested including my kidneys, heart, spleen, GI track and skin/fat. Back then there was not treatment that worked and the best we hoped for was to slow it down. I went to MD Anderson and saw Dr. Barlogie who is now head of the Little Rock group. He was the first person who said he thought "we can beat this thing". We did 4 courses of VAD [vincristine, Adriamycin (doxorubicin), and dexamethasone] treatment, which put me into remission and froze BM cells for a transplant. The old VAD treatments had you wear a chemo pump for 4 days of continuous treatment. Dr. B's thinking was since myeloma is such a slow growing disease you need to expose the cells for a long time but a lower doses which reduced the side-effects.
Back then SCTs were experimental with ~40% dying from the treatments, so I wanted to wait. Then Sloan Kettering published their M2 protocol and I talked him into putting me on that for another 6 months even though I was technically in remission. That protocol included interferon which I stayed on as maintenance for the next 12 years or so. Over time even my amyloid resolved so that my kidneys and heart returned almost to normal and I just got on with my life. This first remission lasted 25 years in total but I relapsed about 18 months ago.
I went on CyBorD (Cytoxan, bortezomib [Velcade], dexamethasone) with Dr. Stewart here in Mayo for about a year which slowly lowered my FLCs to just about normal- a VGPR. Now on a maintenance on bortezomib, lower dex and thalidomide hoping to get my counts completely normal. I have plenty of peripheral stem cells frozen down for a transplant if I need it. My disease may be different than many and we are hoping that these new drugs available today will last a long time.
I have been fortunate to have the very best doctors who I trust and who respect me enough to include me in the treatment decisions. This is probably the best advice I can give other patients. Find the best doctors you can who also allow you to be an active member of your own treatment team.
With the new advances things are much better today then they were for me in 1987 and will only get better in the future. I think we every day we stay alive our chances of beating this things only gets better.
All my best to everyone on this forum, whether patients or caregivers. Dan
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Dan in Phoenix
Re: Are you beating the odds? 10 years+ since diagnosis?
Dan - That is great to hear.
I have both multiple myeloma and amyloidosis too. I was diagnosed at age 38, so it's only 2 years for me now, but I can't wait til I reach your mark! That is by far the longest I've heard of for having both. Very encouraging!!!
I have both multiple myeloma and amyloidosis too. I was diagnosed at age 38, so it's only 2 years for me now, but I can't wait til I reach your mark! That is by far the longest I've heard of for having both. Very encouraging!!!
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Are you beating the odds? 10 years+ since diagnosis?
Thanks Ray,
I wish you all the very best in the future. With all the new treatments and the very best doctors there is a really good chance that you will.
My true wish is that everyone will do as well as I have and soon we will have a cure for myeloma.
Have a wonderful day,
Dan in Phoenix
I wish you all the very best in the future. With all the new treatments and the very best doctors there is a really good chance that you will.
My true wish is that everyone will do as well as I have and soon we will have a cure for myeloma.
Have a wonderful day,
Dan in Phoenix
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Dan in Phoenix
Re: Are you beating the odds? 10 years+ since diagnosis?
Recently, I have spoken with or read posts from long term survivors. I think it is helpful to continue to hear from you all, if nothing more but to provide encouragement. Our long term survivors sometimes leave this group as their life has moved on, but I think it is helpful to always check back time to time to answer questions for the newly diagnosed.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Are you beating the odds? 10 years+ since diagnosis?
Hi LadyLib,
I am not a 10 + years survivor but I am certainly beating the odds. Its been 4+ years since diagnosis. Against the odds my chemorefractory (possibly high risk) myeloma is now in remission after having an allograft in April 2011. I plan on staying around for a long while.
All the best,
Libby
I am not a 10 + years survivor but I am certainly beating the odds. Its been 4+ years since diagnosis. Against the odds my chemorefractory (possibly high risk) myeloma is now in remission after having an allograft in April 2011. I plan on staying around for a long while.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Are you beating the odds? 10 years+ since diagnosis?
My mom is a myleoma SURVIVOR for 5 years so far and her 6 daughters are so thankful for her current state of health!
She was diagnosed in 2007 by a broken arm. She is on maintenance with 5mg Revlimid. did her 2nd stem cell transplant in 2013.
I really think it's about the positive attitude that has allowed her to hang around for a longer period.
So keep on keeping on all of you! HE WHO HAS HOPE HAS EVERYTHING
She did manage to become type 2 diabetic however and her bones hurt with the cold since we live in Canada.
If you have any questions let me know
She was diagnosed in 2007 by a broken arm. She is on maintenance with 5mg Revlimid. did her 2nd stem cell transplant in 2013.
I really think it's about the positive attitude that has allowed her to hang around for a longer period.
So keep on keeping on all of you! HE WHO HAS HOPE HAS EVERYTHING
She did manage to become type 2 diabetic however and her bones hurt with the cold since we live in Canada.
If you have any questions let me know
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