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Do you believe in cure or control?
Do you believe in cure or control? Does anyone go to a doctor who believes in cure besides Arkansas?
Re: Do you believe in cure or control?
The difficulty in answering this question is I have seen that people can have different interpretations of what “cure” and “control” mean.
Do I believe the myeloma can be controlled for a period of time? Yes, lots of evidence of that -- including my own personal experience.
Can myeloma be controlled for an indefinite period of time like what apparently has been achieved for many of those with AIDS? I do not see that today is the case at this time for myeloma.
Can myeloma be cured? I do not see that is the case at this time either. I have seen some people describe what they call a “functional” cure which is usually described as not having any residual disease or relapse for some long period of time such as ten or more years, but I do not set that as being a cure myself, just really good long term control. I have read that experience has shown the disease always eventually comes back.
I have read there are some rare cases where myeloma appears to have been cured, such as with Kathy Giusti, the founder of MMRF, who had a donor transplant from a genetically identical twin sister, making graft vs host disease a non-issue. I also read that there have been a very few cases, like less than a dozen, where myeloma appears to have been cured from auto transplants, but there were few details given. Most of us do not have identical twins for allo transplants and those reported case of cures with auto transplants, if they were cures, are statistically insignificant for us.
I do believe based on the progress in myeloma treatment I have seen it is a realistic possibility that myeloma eventually may controlled much like AIDS is in the mid to long term time frame. I have no reason to believe a cure cannot be found but I have not seen any research or promising leads to that end.
A question I have is how would we know if myeloma has been cured, meaning gone for good never to return, or not? In reading about this disease since I was diagnosed in 2011 I have seen it repeatedly said that even in patients who have no detectable residual disease, experience has shown that myeloma eventually returns all the time, though it could be over a decade later. So if a patient was declared cured and completely rid of the disease today, how could that be proved? How would we be sure the disease would not be comeback in ten years or more as it always has?
It seems we do not have testing sensitive enough to determine if all myeloma cells in the body and any “cancer stem cells” if they exist are gone for good. It cannot be determined if someone is completely rid of the disease or those factors that caused it so if a drug where to be released tomorrow that cures myeloma how would we know it? It seems that time is the only answer.
They only way I see if a cure has been found is when statistically significant numbers of people live the rest of their lives with no detectable disease and start dying of something else besides myeloma. For me that means even if I were given a new treatment today that cured my myeloma, I may not have evidence or indication that has been the case until many years later.
Do I believe the myeloma can be controlled for a period of time? Yes, lots of evidence of that -- including my own personal experience.
Can myeloma be controlled for an indefinite period of time like what apparently has been achieved for many of those with AIDS? I do not see that today is the case at this time for myeloma.
Can myeloma be cured? I do not see that is the case at this time either. I have seen some people describe what they call a “functional” cure which is usually described as not having any residual disease or relapse for some long period of time such as ten or more years, but I do not set that as being a cure myself, just really good long term control. I have read that experience has shown the disease always eventually comes back.
I have read there are some rare cases where myeloma appears to have been cured, such as with Kathy Giusti, the founder of MMRF, who had a donor transplant from a genetically identical twin sister, making graft vs host disease a non-issue. I also read that there have been a very few cases, like less than a dozen, where myeloma appears to have been cured from auto transplants, but there were few details given. Most of us do not have identical twins for allo transplants and those reported case of cures with auto transplants, if they were cures, are statistically insignificant for us.
I do believe based on the progress in myeloma treatment I have seen it is a realistic possibility that myeloma eventually may controlled much like AIDS is in the mid to long term time frame. I have no reason to believe a cure cannot be found but I have not seen any research or promising leads to that end.
A question I have is how would we know if myeloma has been cured, meaning gone for good never to return, or not? In reading about this disease since I was diagnosed in 2011 I have seen it repeatedly said that even in patients who have no detectable residual disease, experience has shown that myeloma eventually returns all the time, though it could be over a decade later. So if a patient was declared cured and completely rid of the disease today, how could that be proved? How would we be sure the disease would not be comeback in ten years or more as it always has?
It seems we do not have testing sensitive enough to determine if all myeloma cells in the body and any “cancer stem cells” if they exist are gone for good. It cannot be determined if someone is completely rid of the disease or those factors that caused it so if a drug where to be released tomorrow that cures myeloma how would we know it? It seems that time is the only answer.
They only way I see if a cure has been found is when statistically significant numbers of people live the rest of their lives with no detectable disease and start dying of something else besides myeloma. For me that means even if I were given a new treatment today that cured my myeloma, I may not have evidence or indication that has been the case until many years later.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Do you believe in cure or control?
I am in the same camp as Eric.
We all hope that there is a cure, but right now it is an elusive goal. However, there are new exciting drugs in development that add more tools to the multiple myeloma tool box.
I have been in a remissive state (low level myeloma) for some 5 years. However, I am not myeloma free and still have treatments. I do believe the multiple myeloma, for many patients, has become a chronic controllable disease (similar to AIDS or diabetes). That may mean that medication at a maintenance level may always be required. The cocktail approach of 3 or more agents (such as RVD and PCD plus a bisphosphonate) has led to longer and longer periods of remission.
The problem with multiple myeloma is that it is not one disease and no single approach works for everyone. That makes cure more difficult. The Total Therapy method used in Arkansas is a very aggressive form of treatment. The concept is to drive the multiple myeloma to the lowest possible level, hit it hard up front, and possibly knock it out. The efficacy of that method vs. the Dr. Berenson minimalist approach without ASCT is hotly debated.
Most of us, in our treatments regimens, fall somewhere between those two approaches. The most aggressive is the allo transplant, which offers the best current potential for cure but also has the highest risk of complications -- including death. The decision to pursue a course of treatment is complicated by age, genetic make-up, other health and personal or quality of life factors.
I chose to not pursue an ASCT or allo and am content and satisfied with my decision. I was standard risk and it appears to have worked for me. Others facing a different set of factors chose different paths and have had great results. This is an individual choice and there are no black and white choices, everything is grey with multiple myeloma.
We all hope that there is a cure, but right now it is an elusive goal. However, there are new exciting drugs in development that add more tools to the multiple myeloma tool box.
I have been in a remissive state (low level myeloma) for some 5 years. However, I am not myeloma free and still have treatments. I do believe the multiple myeloma, for many patients, has become a chronic controllable disease (similar to AIDS or diabetes). That may mean that medication at a maintenance level may always be required. The cocktail approach of 3 or more agents (such as RVD and PCD plus a bisphosphonate) has led to longer and longer periods of remission.
The problem with multiple myeloma is that it is not one disease and no single approach works for everyone. That makes cure more difficult. The Total Therapy method used in Arkansas is a very aggressive form of treatment. The concept is to drive the multiple myeloma to the lowest possible level, hit it hard up front, and possibly knock it out. The efficacy of that method vs. the Dr. Berenson minimalist approach without ASCT is hotly debated.
Most of us, in our treatments regimens, fall somewhere between those two approaches. The most aggressive is the allo transplant, which offers the best current potential for cure but also has the highest risk of complications -- including death. The decision to pursue a course of treatment is complicated by age, genetic make-up, other health and personal or quality of life factors.
I chose to not pursue an ASCT or allo and am content and satisfied with my decision. I was standard risk and it appears to have worked for me. Others facing a different set of factors chose different paths and have had great results. This is an individual choice and there are no black and white choices, everything is grey with multiple myeloma.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Do you believe in cure or control?
My information (and experience) is pretty much "Ditto" as to Eric's and Ron's.
Unless Revlimid and later generation meds stop working completely, I plan to use newer meds to "Control" the multiple myeloma to achieve a quality of life. Hopefully, I will also look for buses, before crossing the street.
Given the increased efficacy of the new meds, immuno-therapies, etc and the significant extension of "control" over this disease, I believe SCT will no longer be a treatment option for Standard or Low risk multiple myeloma. It may well play a role in more aggressive forms of multiple myeloma.
As it stands now, it appears 85 % of multiple myeloma cases "Comes back" , even if you reach a Stringent Complete Remission.
Absent a test that reliably confirms I'm in the 15 % --why bother going for a "Cure" and ruining my body / Health ?
I'm 56. 15 more productive years ( Control) would be a decent deal, for me--given that multiple myeloma is multiple myeloma.
Your mileage may vary.
Unless Revlimid and later generation meds stop working completely, I plan to use newer meds to "Control" the multiple myeloma to achieve a quality of life. Hopefully, I will also look for buses, before crossing the street.
Given the increased efficacy of the new meds, immuno-therapies, etc and the significant extension of "control" over this disease, I believe SCT will no longer be a treatment option for Standard or Low risk multiple myeloma. It may well play a role in more aggressive forms of multiple myeloma.
As it stands now, it appears 85 % of multiple myeloma cases "Comes back" , even if you reach a Stringent Complete Remission.
Absent a test that reliably confirms I'm in the 15 % --why bother going for a "Cure" and ruining my body / Health ?
I'm 56. 15 more productive years ( Control) would be a decent deal, for me--given that multiple myeloma is multiple myeloma.
Your mileage may vary.
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Rneb
4 posts
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