Hi LadyLib,
My multiple myeloma journey has certainly been a roller coaster ride. There have been times when I felt that maybe I wouldn't make it to the next week, but I have. The resilience of the human body is truly amazing. I am now in remission after having an allograft in April 2011.
All the best for you and your husband,
Libby
Forums
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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: Encouraging stories of long survival or remission
To LadyLib:
Great news, but what was his treatment regimen please?
Thanks,
Dennis
Great news, but what was his treatment regimen please?
Thanks,
Dennis
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mmlwwsagman
Re: Encouraging stories of long survival or remission
In June of 2011 at the age of 70 I was hospitalized because my creatinine level was over 5. My kidney doctor was preparing me for an arteriovenous fistula to be used in case dialysis would be needed if my creatinine level continued to increase. Instead, the diagnosis was multiple myeloma, Stage 3. My kappa light chains were over 14,000.
My new doctor was now an oncologist. I started the Velcade cycle the next week and for the next 5 months . My kappa light chains continue of go down along with the creatinine level. Six months after the initial diagnosis, I had an auto stem cell transplant. The procedure didn't go well (that is another story), but the outcome did. I am not on maintenance. My creatinine level is around 1.7, my new norm. My kappa light chains are 10.9 and my kappa / lambda free light chain ratio is 0.36.
My encouraging story of survival is that all of us with multiple myeloma live each day the best we can and try not to think of the outcome. Each day for me is blessed.
My new doctor was now an oncologist. I started the Velcade cycle the next week and for the next 5 months . My kappa light chains continue of go down along with the creatinine level. Six months after the initial diagnosis, I had an auto stem cell transplant. The procedure didn't go well (that is another story), but the outcome did. I am not on maintenance. My creatinine level is around 1.7, my new norm. My kappa light chains are 10.9 and my kappa / lambda free light chain ratio is 0.36.
My encouraging story of survival is that all of us with multiple myeloma live each day the best we can and try not to think of the outcome. Each day for me is blessed.
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jellybean - Name: JoAnn B
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2011
- Age at diagnosis: 70
Re: Encouraging stories of long survival or remission
Hi Dennis,
In the hospital, he was given 5 straight days of plasmapheresis, along with 4 days of a 40 mg dex simultaneous. The next week, he started Velcade, Cytoxan and dex once per week. He has had 5 weeks of that.
In the hospital, he was given 5 straight days of plasmapheresis, along with 4 days of a 40 mg dex simultaneous. The next week, he started Velcade, Cytoxan and dex once per week. He has had 5 weeks of that.
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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: Encouraging stories of long survival or remission
Thanks jellybean for that awesome testimony and to all of the others. I think it helps for everyone to reflect on their journey and how great it is to be here no matter how difficult the struggle or the fears that set in upon diagnosis. You are all still here to tell your story. Stay Strong!
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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: Encouraging stories of long survival or remission
Hi LadyLib.
I was diagnosed May 1, 2009, after months of my ribs hurting. I thought at first I had pulled a muscle, and then I thought I had an autoimmune disease. By the time I got around to getting checked out, I was in stage 3, with several lesions, and the beginnings of kidney trouble. Within two weeks, I was crazy from hypercalcemia, ended up in the hospital, and missed my daughter's college graduation. They got my calcium levels down, my kidney damage reversed, and I started treatment.
I should add that I've been a single mom since my daughter was 1, and I was very determined to be around for her. My daughter and I were determined that I was going to get to remission.
By late fall, I was more than 95% in remission. I had a successful stem cell transplant, and survived what the second round of chemo did to me. I was in 100% remission for two years. Then my M-spike reappeared. It is so low that I'm in the MGUS stage, and we are just watching it now. I've been off of Revlimid since January and feeling really good.
In retrospect, I've probably been living with myeloma at least since 2008, which is when I first tested as anemic and when the first twinges in my ribs started. I have every intention to keep living my life and see my grandchild. Now if my daughter would just find a nice guy!!
I was diagnosed May 1, 2009, after months of my ribs hurting. I thought at first I had pulled a muscle, and then I thought I had an autoimmune disease. By the time I got around to getting checked out, I was in stage 3, with several lesions, and the beginnings of kidney trouble. Within two weeks, I was crazy from hypercalcemia, ended up in the hospital, and missed my daughter's college graduation. They got my calcium levels down, my kidney damage reversed, and I started treatment.
I should add that I've been a single mom since my daughter was 1, and I was very determined to be around for her. My daughter and I were determined that I was going to get to remission.
By late fall, I was more than 95% in remission. I had a successful stem cell transplant, and survived what the second round of chemo did to me. I was in 100% remission for two years. Then my M-spike reappeared. It is so low that I'm in the MGUS stage, and we are just watching it now. I've been off of Revlimid since January and feeling really good.
In retrospect, I've probably been living with myeloma at least since 2008, which is when I first tested as anemic and when the first twinges in my ribs started. I have every intention to keep living my life and see my grandchild. Now if my daughter would just find a nice guy!!
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Encouraging stories of long survival or remission
Hi,
Thanks so very much for the encouraging stories. I am a very positive person and I will find out next Tuesday if this is what I have. I've a very supportive family and friends and am extremely blessed. This week I have been poked and prodded a bunch and in the morning I go for a bone marrow biopsy and a blood transfusion. I have met with a cancer specialist and have a wonderful team working on my behalf.
Blessings to you all and I'm sure that I'll write again and read your incredible stories. Who knows? Our pathways might have been destined to cross.
Thanks so very much for the encouraging stories. I am a very positive person and I will find out next Tuesday if this is what I have. I've a very supportive family and friends and am extremely blessed. This week I have been poked and prodded a bunch and in the morning I go for a bone marrow biopsy and a blood transfusion. I have met with a cancer specialist and have a wonderful team working on my behalf.
Blessings to you all and I'm sure that I'll write again and read your incredible stories. Who knows? Our pathways might have been destined to cross.
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wildflower1321
Re: Encouraging stories of long survival or remission
My story is pretty much the same as jellybeans, except my creatinine was over 6 and my hemoglobin was 7+.
I started Revlimid in March, but I have been off of it the last 2 months because of my blood levels and some other problems. I'm do to restart in a few weeks and I'll see how that goes. My lambda numbers are still very low, but they don't want to let them go if they can avoid it.
I started my journey in 2009.
I started Revlimid in March, but I have been off of it the last 2 months because of my blood levels and some other problems. I'm do to restart in a few weeks and I'll see how that goes. My lambda numbers are still very low, but they don't want to let them go if they can avoid it.
I started my journey in 2009.
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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: Encouraging stories of long survival or remission
Thank you to everyone posting. I am 43 and have just been diagnosed and haven't yet begun treatment. This has been an emotional roller coaster. I am encouraged by all of these stories, so thank you all for posting them!
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nymom - Who do you know with myeloma?: ME
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 43
Re: Encouraging stories of long survival or remission
I was diagnosed in April 2012. I have risk factors of t(4:14) and t(14:16). I chose the path of no stem cell transplant, although I was and am in great health and would be an excellent candidate. I achieved complete stringent remission after 8 months of chemo and have been on maintenance since then. I felt great before diagnosis and continue to feel great and live life to the fullest.
Thank you for posting this request. It is most helpful to all of us.
Thank you for posting this request. It is most helpful to all of us.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
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