At times, this multiple myeloma diagnosis for my husband can be a lot to think about. I just want to encourage him with stories of those who were diagnosed with multiple and are in remission. What is your story? Where did your light chains/numbers start? Where are they now? How long have you been "BETTER"?
Encouraging stories, please! Need some uplifting. If you had kidney involvement, how is that going? Where did your number start, etc.?
Forums
-
LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Encouraging stories of long survival or remission
My husband was diagnosed 2 months after his 40th birthday. He is a plumber by trade and has always had backaches, but this time it felt different. So Aug 2007 he was diagnosed Stage III, no kidney involvement, M-spike was 4.0 g/dL, protein was 8,000. He had a tumor on the L3 which caused a compression fracture and he was in a lot of pain and walked with a cane.
He had 12 rounds of radiation, 5 rounds of thalidomide / dex, kyphoplasty to fix the fracture, and 2 auto stem cell transplants in 2008. He was never sick at all during his treatments, he has an iron stomach I think. His only complaint during the transplants was severe heartburn. The kyphoplasty helped a lot and was back to normal after a few weeks, had that done Nov 2007.
He was out and about about a month after each transplant. He is on Social Security disability and hasn't worked since being diagnosed. He has been in remission 5 years and 4 months with no maintenance and feels really good. He now has an M-spike of 0.40 g/dL but all other numbers are in range as of last week. No chemo yet.
I wish you all the best.
He had 12 rounds of radiation, 5 rounds of thalidomide / dex, kyphoplasty to fix the fracture, and 2 auto stem cell transplants in 2008. He was never sick at all during his treatments, he has an iron stomach I think. His only complaint during the transplants was severe heartburn. The kyphoplasty helped a lot and was back to normal after a few weeks, had that done Nov 2007.
He was out and about about a month after each transplant. He is on Social Security disability and hasn't worked since being diagnosed. He has been in remission 5 years and 4 months with no maintenance and feels really good. He now has an M-spike of 0.40 g/dL but all other numbers are in range as of last week. No chemo yet.
I wish you all the best.
-
Tconklin
Re: Encouraging stories of long survival or remission
Yesterday was the 8-year anniversary of Hurricane Katrina. It was also an anniversary of a different sort for me: it was the day I was diagnosed with multiple myeloma. Sorry to say, I can't give you any details of my lab numbers. I was in such a state of shock I really can't remember them, and I never keep up with them, except to know when something was out of the normal range.
My myeloma was found due to a fractured thigh bone. I then found out I also had lesions in my neck, pelvis, and arm. I was anemic, but I don't believe I had any kidney damage.
Immediately after the diagnosis was made, I had to have a rod inserted into my leg, and then subsequently started radiation. A month or so later, following oral chemo, I had the first of two stem cell transplants (as part of a clinical trial at Vanderbilt). The second stem cell transplant followed about four months later.
Here it is 2013, and I am still in complete remission!! Considering my treatment started 8 years ago, I think with new medicines and protocols, etc, the chance for a positive outcome is even more likely than it was back then.
My myeloma was found due to a fractured thigh bone. I then found out I also had lesions in my neck, pelvis, and arm. I was anemic, but I don't believe I had any kidney damage.
Immediately after the diagnosis was made, I had to have a rod inserted into my leg, and then subsequently started radiation. A month or so later, following oral chemo, I had the first of two stem cell transplants (as part of a clinical trial at Vanderbilt). The second stem cell transplant followed about four months later.
Here it is 2013, and I am still in complete remission!! Considering my treatment started 8 years ago, I think with new medicines and protocols, etc, the chance for a positive outcome is even more likely than it was back then.
-
lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: Encouraging stories of long survival or remission
Good Morning,
I was diagnosed December 24, 2008 with lesions throughout my body, fractured ribs, spine, kidneys were affected. Two days later, I broke my arm due to the lesions. I went thru chemo for six months, twice a week. In June, I was in "complete remission" . Therefore, I have been in "complete remission" for over 4 years. I have not been on a maintenance plan nor have I had a stem cell transplant. I continue to be checked every 3 months for any changes.
I see my local oncologist for treatment, but go to MD Anderson in Houston where they are the ones who call the shots regarding my treatments.
Good luck to your husband, just stay strong, keep the faith and take one day at a time.
Hope this will allow your husband some peace of mind there are a lot of us with success stories and sending payers your husband will be one as well.
I was diagnosed December 24, 2008 with lesions throughout my body, fractured ribs, spine, kidneys were affected. Two days later, I broke my arm due to the lesions. I went thru chemo for six months, twice a week. In June, I was in "complete remission" . Therefore, I have been in "complete remission" for over 4 years. I have not been on a maintenance plan nor have I had a stem cell transplant. I continue to be checked every 3 months for any changes.
I see my local oncologist for treatment, but go to MD Anderson in Houston where they are the ones who call the shots regarding my treatments.
Good luck to your husband, just stay strong, keep the faith and take one day at a time.
Hope this will allow your husband some peace of mind there are a lot of us with success stories and sending payers your husband will be one as well.
-
Hippo0040
Re: Encouraging stories of long survival or remission
I was diagnosed 28 months ago. I had kidney involvement and my bones are ok. At its worst (10 months into myeloma), my creatinine was over 8 and protein at 7,000. My kidney doc at the time wanted me to start dialysis. I declined ... to me, my kidneys still worked.
Now at 28 months, my protein is down to low 1,000s with UPEP of 50%. So we've got partial remission and I feel great. I live a pretty normal life. Maintenance chemo once every two weeks is not too bad. Once your husband gets the myeloma under control, the kidneys can bounce back. They'll never be 100%, but they do improve and function pretty well.
Now at 28 months, my protein is down to low 1,000s with UPEP of 50%. So we've got partial remission and I feel great. I live a pretty normal life. Maintenance chemo once every two weeks is not too bad. Once your husband gets the myeloma under control, the kidneys can bounce back. They'll never be 100%, but they do improve and function pretty well.
-
matt g
Re: Encouraging stories of long survival or remission
My husband is 45 and we have 3 kids. He was diagnosed last summer when he was experiencing back pain. Unfortunately by the time they determined multiple myeloma, the tumor in his back grew so fast it damaged his spine and like an accident he will not regain his ability to walk without assistance.
He went thru his 1st chemo / stem cell transplant in December and the tandem in May. Both were very, very hard. We powered thru and he is 2 weeks in remission!! Decided no maintenance as it will not extend life longevity, only remission, and we will determine what to do if myeloma ever returns.
We are very blessed with a fantastic team of doctors and nurses. We certainly now appreciate each and every day gifted more than ever!
He went thru his 1st chemo / stem cell transplant in December and the tandem in May. Both were very, very hard. We powered thru and he is 2 weeks in remission!! Decided no maintenance as it will not extend life longevity, only remission, and we will determine what to do if myeloma ever returns.
We are very blessed with a fantastic team of doctors and nurses. We certainly now appreciate each and every day gifted more than ever!
-
thoresen
Re: Encouraging stories of long survival or remission
In twelve days, it will be seven years that I was told I had multiple myeloma. My first question was,"What's that?" July 26th was my sixth year after my stem cell transplant. Since then, I attended two years of my youngest daughter's swim meets and soccer matches. I've been at the hospital for birth of seven grandchildren. I saw my youngest daughter graduate from high school and college. June first of this year I walked her down the aisle in her wedding dress.
I was the best man for my youngest son at his wedding on the beach at sunrise. We partied until two in the morning, and the wedding was at 6 AM. I don't party like that any more, but I still have a mug of beer or a glass of wine daily.
I still work full time, but plan to retire this year. I could go on and on. I think it was harder on my wife than me.
I was the best man for my youngest son at his wedding on the beach at sunrise. We partied until two in the morning, and the wedding was at 6 AM. I don't party like that any more, but I still have a mug of beer or a glass of wine daily.
I still work full time, but plan to retire this year. I could go on and on. I think it was harder on my wife than me.
-
h2omaker - Name: Tom
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 9/11/2006
- Age at diagnosis: 55
Re: Encouraging stories of long survival or remission
Thank you all so much. We received great news today. My husband's kidney function is slowly but surely improving. His kappa light chain numbers have dropped from 518 to 73 in just 4 weeks of treatment. We are elated and expecting even more great results in the future. We are truly believers and wait with expectation for a testimony also.
-
LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Encouraging stories of long survival or remission
Congrats on your good news! I felt compelled to reply with my own story.
I was diagnosed in August 2007 after several months of illness. I don't remember all the details, but I was dropped into the most advanced stage category - I think that was 3b. I had moderate anemia, spine and rib fractures. My labs were scary. I am a clinical lab technologist, so I was shocked! I had crazy high protein in my urine, but my serum creatinine was still normal.
My chromosome studies did not indicate high risk myeloma. I did not have radiation. I started on Revlimid / dex and had an amazing response in the first month. My oncologist was laughing! After 4 months of Revlimid / dex, I had my first stem cell transplant and 4 months later the second. I am not on maintenance and continue in full remission for 5 years.
I did lose my job due to exceeding 3 months FMLA. I am married and we decided that I would not go back to work. I am fortunate that I have that option. May your reports continue to improve ...
I was diagnosed in August 2007 after several months of illness. I don't remember all the details, but I was dropped into the most advanced stage category - I think that was 3b. I had moderate anemia, spine and rib fractures. My labs were scary. I am a clinical lab technologist, so I was shocked! I had crazy high protein in my urine, but my serum creatinine was still normal.
My chromosome studies did not indicate high risk myeloma. I did not have radiation. I started on Revlimid / dex and had an amazing response in the first month. My oncologist was laughing! After 4 months of Revlimid / dex, I had my first stem cell transplant and 4 months later the second. I am not on maintenance and continue in full remission for 5 years.
I did lose my job due to exceeding 3 months FMLA. I am married and we decided that I would not go back to work. I am fortunate that I have that option. May your reports continue to improve ...
-
Allison - Name: Allison
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2007
- Age at diagnosis: 52
Re: Encouraging stories of long survival or remission
Hi LadyLib,
My story is unusual and I've posted it here before, but I was diagnosed in 1987 with myeloma and systemic amyloidosis at the age of 29. Essentially, my myeloma antibodies are converted to a starch-like substance that infiltrates my organs and causes organ failure. It was found everywhere they biopsied including my heart, kidneys, GI track, spleen and liver. They gave me 6 months to live and there were no treatments that worked back then.
I went to the best expert in the country who was at MD Anderson then - the Director at Little Rock now - and he used three drug combo of VAD (vincrinstine, adriamycin, and dex) for 3 months until remission.
Then a friend sent me a NYT article that said Sloan Kettering had good results with a 4-drug combo that included interferon-alpha (the M2 protocol, I believe). I did that for another 3 months even though my counts were undetectable by the most sensitive tests at the time. Our thinking was it would eventually come back, but a stronger response would keep it away longer. I had bone marrow frozen down for a transplant if it came back - they weren't doing peripheral stem cell collection yet. Transplants were still experimental then and ~30% died from the treatment, so I chose to wait until it came back. Dr. B uses the best cutting edge science for his patients, which is why he gets superior results.
I was in remission for 25 years after 13 years of just interferon maintenance, then about 12 on no drugs. It came back about 18 months ago, but the new drugs are much easier and I'm back in a VGPR heading towards sCR hopefully. I now have two harvests frozen down in Little Rock, enough for 4 transplants if I need them.
My point is everyone if different, but science has advanced so much in 26 years and will only get better. I hope this makes you feel a little better.
All my best to you and everyone who is dealing with myeloma.
Dan
My story is unusual and I've posted it here before, but I was diagnosed in 1987 with myeloma and systemic amyloidosis at the age of 29. Essentially, my myeloma antibodies are converted to a starch-like substance that infiltrates my organs and causes organ failure. It was found everywhere they biopsied including my heart, kidneys, GI track, spleen and liver. They gave me 6 months to live and there were no treatments that worked back then.
I went to the best expert in the country who was at MD Anderson then - the Director at Little Rock now - and he used three drug combo of VAD (vincrinstine, adriamycin, and dex) for 3 months until remission.
Then a friend sent me a NYT article that said Sloan Kettering had good results with a 4-drug combo that included interferon-alpha (the M2 protocol, I believe). I did that for another 3 months even though my counts were undetectable by the most sensitive tests at the time. Our thinking was it would eventually come back, but a stronger response would keep it away longer. I had bone marrow frozen down for a transplant if it came back - they weren't doing peripheral stem cell collection yet. Transplants were still experimental then and ~30% died from the treatment, so I chose to wait until it came back. Dr. B uses the best cutting edge science for his patients, which is why he gets superior results.
I was in remission for 25 years after 13 years of just interferon maintenance, then about 12 on no drugs. It came back about 18 months ago, but the new drugs are much easier and I'm back in a VGPR heading towards sCR hopefully. I now have two harvests frozen down in Little Rock, enough for 4 transplants if I need them.
My point is everyone if different, but science has advanced so much in 26 years and will only get better. I hope this makes you feel a little better.
All my best to you and everyone who is dealing with myeloma.
Dan
-
Dan in Phoenix
26 posts
• Page 1 of 3 • 1, 2, 3