I have weighed in my heart if this is an appropriate topic. If it causes you any pain please forgive me. I finished stem cell collection yesterday and the ASCT is Sept.21. I have stage 1 Myeloma and have responded well to treatment at every step. I'm a 58 year old father of two young children and need to understand the future possibilities, both good and bad. This way I will have some knowledge to handle any news I get over the next 3-4 months.
It is hard to get real information about the progression of this disease as treatment becomes less effective. If it is not painful to you or your family does anyone wish to share some of thier story?
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: The progression of this disease.
I am 68 this year and have been diagnosed since 2007, almost four years. I had a BMT in April, 2009 at UCSF. I stayed in remission for about 6 months, at which time the disease starting showing again on the "radar". It grew fairly slowly, though, and I later started a low dose of Revlimid in 2010. I did not do well and the disease continued to progress. I am now on Velcade at a little higher dose and hoping to knock down the numbers somewhat.
That said, in my case I was diagnosed Stage III with kidney damage. I have the bone disease part of this, with pain in several places and have had radiation both for pain and for two fractures in the upper (thoracic) spine, plus a kyphoplasty for one of the fractures.
I understand from my oncologist that the short time in remission has a prognostic effect on the expected results of a second transplant. I do have stem cells for another transplant still frozen at UCSF and could do another one, but now am thinking that it might not be realistic to think it would buy much more time than the first one did. It is still a question for me and I, too, wonder about what is in my future in terms of disease progression and what I might be going through as it does progress. I understand we can never know exactly how each of us will respond, but if people could share some of what they have witnessed it might help some of us.
Thank you for putting this topic out there for discussion.
That said, in my case I was diagnosed Stage III with kidney damage. I have the bone disease part of this, with pain in several places and have had radiation both for pain and for two fractures in the upper (thoracic) spine, plus a kyphoplasty for one of the fractures.
I understand from my oncologist that the short time in remission has a prognostic effect on the expected results of a second transplant. I do have stem cells for another transplant still frozen at UCSF and could do another one, but now am thinking that it might not be realistic to think it would buy much more time than the first one did. It is still a question for me and I, too, wonder about what is in my future in terms of disease progression and what I might be going through as it does progress. I understand we can never know exactly how each of us will respond, but if people could share some of what they have witnessed it might help some of us.
Thank you for putting this topic out there for discussion.
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djparsons - Name: Donna
- Who do you know with myeloma?: myself & my support group
- When were you/they diagnosed?: October 18, 2007
- Age at diagnosis: 64
Re: The progression of this disease?
Bob,
I can't imagine how terrifying all of this is for you - especially with two young children that you are worried about. But this is not the end, and you should try not to think like that. Your post had a lot of positives in it -- you are young, you were diagnosed early, and you have responded well to the treatments that you have received! All of that bodes well for your SCT being a success.
Some things to keep in mind -- many people are living quite a long time with this disease. On this site and on the ACOR list serves I see people who have survived 8 - 16+ years. And those numbers are only expected to go up. Doc's say they are just a few years from finding a cure. Your goal is to get thru the SCT, hopefully get into a CR, maybe go on maintenance, and to stay healthy so that science can catch up! ...and of course, to enjoy the good things you have in your life, including your family.
I know all this seems trite, but I don't believe it is unrealistic. One post I read yesterday on the ACOR site was from an MMer who was going to participate in a triathalon this weekend. Your disease may eventually progress, but there is too much life to be lived in the meantime.
Lyn
I can't imagine how terrifying all of this is for you - especially with two young children that you are worried about. But this is not the end, and you should try not to think like that. Your post had a lot of positives in it -- you are young, you were diagnosed early, and you have responded well to the treatments that you have received! All of that bodes well for your SCT being a success.
Some things to keep in mind -- many people are living quite a long time with this disease. On this site and on the ACOR list serves I see people who have survived 8 - 16+ years. And those numbers are only expected to go up. Doc's say they are just a few years from finding a cure. Your goal is to get thru the SCT, hopefully get into a CR, maybe go on maintenance, and to stay healthy so that science can catch up! ...and of course, to enjoy the good things you have in your life, including your family.
I know all this seems trite, but I don't believe it is unrealistic. One post I read yesterday on the ACOR site was from an MMer who was going to participate in a triathalon this weekend. Your disease may eventually progress, but there is too much life to be lived in the meantime.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: The progression of this disease?
Christa's Mom, thank you for your kind words and message of hope. Your love and tenderness come through in your post.
My motivation here is to understand what I'm faced with. I have tons of positive information and I thank God for the wonderful therapies and our Canadian Health Care system. I am not in any way frightened or in a macabre state of mind. But I know almost nothing about the progression of the disease and that is no way to make decisions.
I spend much time with many people who did not get the responses they expected. The impact of that is as great as the initial diagnosis.
I'll give a perfect example. My transplant center is one of the best in the world. I know so much about the genetics of myeloma, blood and marrow, drugs and linecare, oral care and diet, and a phsychologist helped me prepare for the loss of my hair. Noone can discuss knowingly about the progression of my lesions and the skeletal problems because they are first line blood and marrow specialists. DJ above has helped me a great deal already.
My motivation here is to understand what I'm faced with. I have tons of positive information and I thank God for the wonderful therapies and our Canadian Health Care system. I am not in any way frightened or in a macabre state of mind. But I know almost nothing about the progression of the disease and that is no way to make decisions.
I spend much time with many people who did not get the responses they expected. The impact of that is as great as the initial diagnosis.
I'll give a perfect example. My transplant center is one of the best in the world. I know so much about the genetics of myeloma, blood and marrow, drugs and linecare, oral care and diet, and a phsychologist helped me prepare for the loss of my hair. Noone can discuss knowingly about the progression of my lesions and the skeletal problems because they are first line blood and marrow specialists. DJ above has helped me a great deal already.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
4 posts
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