It is very clear that Mark appears somewhat 'bully like' in his pushing his success with allo transplant and 'positivity'. for 'success'. I cannot have any transplant for mutiple reasons including cytogenteics. I live alone get on with life without help, inspite of repeated hospital inpatient episodes, including this last week. New treatment drug led to new problems which will need monitoring as this drug is not so well studied yet on all fronts.
Annamarie has rightly pointed out Mark 11 seems to put people down, quoting and interpreting his research,as almost definitative,
I think people should not be allowed to push their views based on their own treatments,but to be prepared to accept that in myeloma treatment their are no guarantees and their are higher risks with some. They need to listen to others who are also trying to get a handle on their treatment choices- that is what they are- not guaranteed.
I think Mark11 helped start a useful information session, but then pushed 'others' out.
Edna
Forums
Re: Progress toward a multiple myeloma cure?
I should not get into this but this is not the place to get into feelings of how someone presents information for others. We all have our own personal experiences so of course we will feel strongly about something that worked for us in the hope that it will help others.
I am grateful for the information that is presented on this forum regardless if it helped us or not. I thank the people who are very informed & have concrete information & data, Mark and Multibilly.
I am grateful for the information that is presented on this forum regardless if it helped us or not. I thank the people who are very informed & have concrete information & data, Mark and Multibilly.
Re: Progress toward a multiple myeloma cure?
I have mentioned here many times that the target audience for most of my posts are newly diagnosed, younger, transplant eligible, high-risk patients like I was. If you do not happen to fall into that group, you can choose to not read or participate in threads that I start that are geared toward the above group. Note that a few people thanked me for starting this thread.
I do try and give younger patients hope they can have the same type of outcome that I currently have. I realize that some patients that view the therapies as "competitors" do not like it when someone that chose another therapy path has a good outcome. I do not have that outlook and I am happy to hear about any patient that does well. I have never gone in to a thread and made a comment like "you did well but how about all the others who died that chose that therapy path". That comment would be in poor taste just like some of the comments above and that are commonly made about allo transplant.
If all you are going to do in a thread is go in and be negative for the sake of being negative, just avoid commenting in the thread. If you read the last post I made prior to Annamaria's, her next post was clearly out of context with what I had just posted. I just commented on how well the therapies we have can compliment each other and how hopefully that could lead to more long term remissions. As I mentioned above, I love that first study - it was one of 3 that helped me most to make my therapy decision. However, it did not belong in this thread given what had been discussed and given the title of the thread. That study was designed to show if molecular testing for MRD after allo transplant for patients treated in the 1990's could predict what patients would relapse. If you go back to my original post, I was hoping for links to more recent studies that showed some newer therapies showing cure potential.
IvanM had it right in his post. For those that are newer posters, IvanM and I have had a few discussions using papers to discuss the issues related to allo transplant. Go search for them if you are interested in the topic. We had some excellent discussions that I am sure other patients would learn from. You could see how two people could interpret the same information in a different way.
I do have one comment related to allo transplant. For those reading that are not US residents, it will be Thanksgiving this Thursday in the US. I called my donor yesterday. As you could imagine she is at the top of my list of people that I am thankful for!. My donor, the special person that was willing to go through the "inconvenience" of multiple medical tests and agreed to donate marrow instead of peripheral blood stem cells so a total stranger would not only have the gift of living but could live with a better QOL due to marrow recipients having less chance of extensive chronic GVHD as opposed to a peripheral blood donation. That is what allo transplant is about - special people like my donor helping another person for no financial gain, just the knowledge they helped another person. It says a lot about the mindset of the people here that never did one that want to associate allo transplant only with death, dying and poor outcomes.
I do try and give younger patients hope they can have the same type of outcome that I currently have. I realize that some patients that view the therapies as "competitors" do not like it when someone that chose another therapy path has a good outcome. I do not have that outlook and I am happy to hear about any patient that does well. I have never gone in to a thread and made a comment like "you did well but how about all the others who died that chose that therapy path". That comment would be in poor taste just like some of the comments above and that are commonly made about allo transplant.
If all you are going to do in a thread is go in and be negative for the sake of being negative, just avoid commenting in the thread. If you read the last post I made prior to Annamaria's, her next post was clearly out of context with what I had just posted. I just commented on how well the therapies we have can compliment each other and how hopefully that could lead to more long term remissions. As I mentioned above, I love that first study - it was one of 3 that helped me most to make my therapy decision. However, it did not belong in this thread given what had been discussed and given the title of the thread. That study was designed to show if molecular testing for MRD after allo transplant for patients treated in the 1990's could predict what patients would relapse. If you go back to my original post, I was hoping for links to more recent studies that showed some newer therapies showing cure potential.
IvanM had it right in his post. For those that are newer posters, IvanM and I have had a few discussions using papers to discuss the issues related to allo transplant. Go search for them if you are interested in the topic. We had some excellent discussions that I am sure other patients would learn from. You could see how two people could interpret the same information in a different way.
I do have one comment related to allo transplant. For those reading that are not US residents, it will be Thanksgiving this Thursday in the US. I called my donor yesterday. As you could imagine she is at the top of my list of people that I am thankful for!. My donor, the special person that was willing to go through the "inconvenience" of multiple medical tests and agreed to donate marrow instead of peripheral blood stem cells so a total stranger would not only have the gift of living but could live with a better QOL due to marrow recipients having less chance of extensive chronic GVHD as opposed to a peripheral blood donation. That is what allo transplant is about - special people like my donor helping another person for no financial gain, just the knowledge they helped another person. It says a lot about the mindset of the people here that never did one that want to associate allo transplant only with death, dying and poor outcomes.
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Mark11
Re: Progress toward a multiple myeloma cure?
Mark11's contributions to this forum are and have been very useful. However, if I may suggest, perhaps you could take a kinder approach to dealing with your fellow patients and caregivers. You have done your research, you probably know more about this disease than many of us who are here on this forum, and who are down on our luck with this disease, looking for any news, treatment or other pertinent event to help us or our loved ones make the right treatment decisions.
Happy New Year & Kind Regards,
Frank
Happy New Year & Kind Regards,
Frank
Re: Progress toward a multiple myeloma cure?
On another note, unless I am (probably ) in a dex fog, I believe UAMS / Arkansas claims a certain cure percentage for their newly diagnosed, low-risk patients undergoing Total Therapy. Why is it that these claims have never been scientifically challenged (tested, duplicated). I asked one of the top myeloma experts in the country if the UAMS claims and data are erroneous. His answer was NO, however he did mention a lack of data randomization, selective sampling, and other issues related to procedural techniques.
There are (arguably) only two (2) treatments that claim or have shown some cure to date:
1. Total Therapy from Arkansas
2. Allogeneic (donor) stem cell transplants
Again, why is it that relatively very little research or studies have been dedicated to these potential cure treatments, especially the allo transplants. It is understandable that pharmaceutical companies would be reluctant to invest millions to eradicate a disease that would result in billions in lost revenues. Hence the dilemma: no or very little research or investment in some of the most promising cure treatments for multiple myeloma.
Sad and shameful!
Frank
There are (arguably) only two (2) treatments that claim or have shown some cure to date:
1. Total Therapy from Arkansas
2. Allogeneic (donor) stem cell transplants
Again, why is it that relatively very little research or studies have been dedicated to these potential cure treatments, especially the allo transplants. It is understandable that pharmaceutical companies would be reluctant to invest millions to eradicate a disease that would result in billions in lost revenues. Hence the dilemma: no or very little research or investment in some of the most promising cure treatments for multiple myeloma.
Sad and shameful!
Frank
Re: Progress toward a multiple myeloma cure?
Hi Duckjibe,
Thanks for the constructive criticism and thanks for the compliment. I do my best with my posts but it can be difficult to balance posts to my "target audience" with many of the other patients that may be reading. As I have mentioned, I really post for the benefit of newly diagnosed younger patients, particularly high risk patients, to show that they can have a great outcome with respect to drug free remission and quality of life. As regular readers know, I have not had much experience with the drugs most of you are using. I try and contribute to topics that I am familiar with - allogeneic transplant and immunotherapy - and leave the discussion of the drugs to patients that have experience using them. I think that is the best way to contribute in a forum, as opposed to making comments about therapies that I have limited / no knowledge of or have actually used.
Everyone has to realize that I hold some views that are not commonly held here on the forum. The two main ones are that myeloma should be viewed as a curable disease and treated as such for younger patients, and that quality of life is better for patients that do transplants, particularly allogeneic transplant, if they lead to long-term drug free remissions / cure. Since so few patients think / treat that way, it is to be expected that some of my posts can cause some negative reactions, since they are so different than the opinions that most of you hold.
Mark
Thanks for the constructive criticism and thanks for the compliment. I do my best with my posts but it can be difficult to balance posts to my "target audience" with many of the other patients that may be reading. As I have mentioned, I really post for the benefit of newly diagnosed younger patients, particularly high risk patients, to show that they can have a great outcome with respect to drug free remission and quality of life. As regular readers know, I have not had much experience with the drugs most of you are using. I try and contribute to topics that I am familiar with - allogeneic transplant and immunotherapy - and leave the discussion of the drugs to patients that have experience using them. I think that is the best way to contribute in a forum, as opposed to making comments about therapies that I have limited / no knowledge of or have actually used.
Everyone has to realize that I hold some views that are not commonly held here on the forum. The two main ones are that myeloma should be viewed as a curable disease and treated as such for younger patients, and that quality of life is better for patients that do transplants, particularly allogeneic transplant, if they lead to long-term drug free remissions / cure. Since so few patients think / treat that way, it is to be expected that some of my posts can cause some negative reactions, since they are so different than the opinions that most of you hold.
Mark
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Mark11
Re: Progress toward a multiple myeloma cure?
Excellent second post, Duckjibe. Does not sound like you are in a dex fog to me!
I was hoping this thread would have some discussion of topics like this. You make a couple of excellent points. Both Total Therapy and allogeneic transplants do not rely on / are not considered targeted therapies. Allogeneic transplant is sometimes referred to as "non-specific immunotherapy". In all blood cancers, I do not believe there is an example of a so called targeted therapy that is considered a cure. If someone knows of one, please post a link.
They can greatly benefit patients to try and turn the disease into something chronic and help chemotherapy or immunotherapy like allo transplant cure patients. The classic example of a targeted therapy helping cure patients is Rituxan - CD20 antibody for non-Hodgkins lymphoma. Adding it to CHOP increased the cure rate, but by itself it is not considered curative. For those not familiar, the "C" in CHOP is Cytoxan (an alkylator). I bring that up because it seems like a lot of patients talk about so called "targeted therapies" as being a key to finding another cure for myeloma while they have not proven to have the curative potential of combination chemotherapy or immunotherapy in the form of allo transplant yet. It seems like many doctors and patients do not view the drugs (standard or high dose) available to myeloma patients currently as being curative, it is not likely an antibody would increase the cure rate substantially. Hopefully it will, but if I was newly diagnosed in 2016 I would not rely on it personally.
With respect to why there are not randomized trials with Total Therapy or more research on allo transplant specifically for myeloma patients, the problem in my opinion is that there are not enough patients to do those trials. I did an allo as part of my upfront and I was not in a clinical trial. I would not go into a randomized trial for allo transplant since it would be possible to be randomized to the non allo group. I could not imagine too many patients that wanted to do Total Therapy would be willing to go into a randomized trial where they could get randomized into a less aggressive therapy.
Also note in the US that only 12% of newly diagnosed patients do an auto transplant during the first year of diagnosis in 2010. I also know in 2011, the year I did my allo in first complete response, only 18 myeloma patients in the US did an unrelated allogeneic transplant in remission. You are not going to cure many patients if so few are willing to use aggressive therapy as part of their initial treatment. The reality is that you cure blood cancer patients with upfront, aggressive therapy. Without patients willing to be treated with more aggressive therapies early in disease course, the cure rate for myeloma will likely remain very low.
I was hoping this thread would have some discussion of topics like this. You make a couple of excellent points. Both Total Therapy and allogeneic transplants do not rely on / are not considered targeted therapies. Allogeneic transplant is sometimes referred to as "non-specific immunotherapy". In all blood cancers, I do not believe there is an example of a so called targeted therapy that is considered a cure. If someone knows of one, please post a link.
They can greatly benefit patients to try and turn the disease into something chronic and help chemotherapy or immunotherapy like allo transplant cure patients. The classic example of a targeted therapy helping cure patients is Rituxan - CD20 antibody for non-Hodgkins lymphoma. Adding it to CHOP increased the cure rate, but by itself it is not considered curative. For those not familiar, the "C" in CHOP is Cytoxan (an alkylator). I bring that up because it seems like a lot of patients talk about so called "targeted therapies" as being a key to finding another cure for myeloma while they have not proven to have the curative potential of combination chemotherapy or immunotherapy in the form of allo transplant yet. It seems like many doctors and patients do not view the drugs (standard or high dose) available to myeloma patients currently as being curative, it is not likely an antibody would increase the cure rate substantially. Hopefully it will, but if I was newly diagnosed in 2016 I would not rely on it personally.
With respect to why there are not randomized trials with Total Therapy or more research on allo transplant specifically for myeloma patients, the problem in my opinion is that there are not enough patients to do those trials. I did an allo as part of my upfront and I was not in a clinical trial. I would not go into a randomized trial for allo transplant since it would be possible to be randomized to the non allo group. I could not imagine too many patients that wanted to do Total Therapy would be willing to go into a randomized trial where they could get randomized into a less aggressive therapy.
Also note in the US that only 12% of newly diagnosed patients do an auto transplant during the first year of diagnosis in 2010. I also know in 2011, the year I did my allo in first complete response, only 18 myeloma patients in the US did an unrelated allogeneic transplant in remission. You are not going to cure many patients if so few are willing to use aggressive therapy as part of their initial treatment. The reality is that you cure blood cancer patients with upfront, aggressive therapy. Without patients willing to be treated with more aggressive therapies early in disease course, the cure rate for myeloma will likely remain very low.
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Mark11
Re: Progress toward a multiple myeloma cure?
Mark, I think the higher risk of death which comes with allo versus auto transplants scares people off.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Progress toward a multiple myeloma cure?
Hi DUCKJIBE
Pharmaceutical companies do support research into the efficacy of the varous Total Therapy protocols developed by Dr. Bart Barlogie and his colleagues at UAMS.
For example, in "Curing myeloma at last: defining criteria and providing the evidence" (Blood. 2014 Nov 13;124(20):3043-5), Dr. Barlogie discloses research funding from both Celgene and Millenium (although funding for this particular study came in part from a grant from the NIH).
Moreover, just last March, UAMS announced a $10 million contribution from Celgene in support of myeloma research and therapy.
Total Therapy, in its various incarnations, is entirely based on combinations of various chemotherapy agents and the newer novel agents. Drug companies have every reason to support it. Moreover, these companies are, by and large, immensely profitable, and that profitability does not depend on favoring drugs for maintenance over those that are part of a potentially curative regimen for a relatively rare disease like multiple myeloma.
The situation with respect to allogeneic transplants seems to be partially due to a reluctance to embark on aggressive treatment plans on the part of patients and some clinicians, when less aggressive alternatives are available. There is also the much higher morbidity and mortality risks associated with allogeneic transplants. Somehow, for many people, that just swamps the fact that they can be curative. After reading Mark's posts on the subject, I would, if I were young, absolutely pursue an allogeneic transplant in order to regain my health permanently. The risks might be worth it, and so Mark is definitely helping younger patients make an informed decision about an option that seems to be dismissed out of hand by many.
I do think that pharmaceutical companies are part of the solution, rather than part of the problem. At least in this case.
Pharmaceutical companies do support research into the efficacy of the varous Total Therapy protocols developed by Dr. Bart Barlogie and his colleagues at UAMS.
For example, in "Curing myeloma at last: defining criteria and providing the evidence" (Blood. 2014 Nov 13;124(20):3043-5), Dr. Barlogie discloses research funding from both Celgene and Millenium (although funding for this particular study came in part from a grant from the NIH).
Moreover, just last March, UAMS announced a $10 million contribution from Celgene in support of myeloma research and therapy.
Total Therapy, in its various incarnations, is entirely based on combinations of various chemotherapy agents and the newer novel agents. Drug companies have every reason to support it. Moreover, these companies are, by and large, immensely profitable, and that profitability does not depend on favoring drugs for maintenance over those that are part of a potentially curative regimen for a relatively rare disease like multiple myeloma.
The situation with respect to allogeneic transplants seems to be partially due to a reluctance to embark on aggressive treatment plans on the part of patients and some clinicians, when less aggressive alternatives are available. There is also the much higher morbidity and mortality risks associated with allogeneic transplants. Somehow, for many people, that just swamps the fact that they can be curative. After reading Mark's posts on the subject, I would, if I were young, absolutely pursue an allogeneic transplant in order to regain my health permanently. The risks might be worth it, and so Mark is definitely helping younger patients make an informed decision about an option that seems to be dismissed out of hand by many.
I do think that pharmaceutical companies are part of the solution, rather than part of the problem. At least in this case.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Progress toward a multiple myeloma cure?
Hi Folks,
I've been following this thread with interest. Now I'm finally ready to jump into the fray.
Mostly I want to comment on the recent (2016) posts in this thread. Like Duckjibe, I agree that Mark11's posts have been important contributions to the Forum. Mark is coming from a very different perspective on things than I am. I'm "middle aged" for multiple myeloma, and my treatment so far has been more like what one would consider "standard of care" treatment, including induction, auto SCT, consolidation, and maintenance. So I appreciate hearing Mark's views.
In my opinion, one of the things that would really contribute toward finding a multiple myeloma cure is agreeing what "cure" means. For example, in one of Mark11's posts early in this thread, "cure" seems to be operationally defined as >10 years progression-free survival (PFS). In another paper Mark11 referenced later in the thread, "cure" is defined as "durable PCR-negativity." But I don't think "durable" was defined there. In the Barlogie et al paper that MrPotatoHead referenced just above this post, well, I've read that paper twice, once in 2014 when it came out and again just now, and I still do not know how they actually define "cure." In addition to these various definitions, we have the Black Swan effort, which is yet another approach toward defining "cure."
I'm no doctor or medical researcher, but as a retired scientist and engineer, it seems to me that it would be helpful if multiple myeloma researchers and clinicians could agree on a single operational definition of "multiple myeloma cure," at least for the next 5 years or so. That would at least get people talking the same language.
I don't know what the "right" definition is. But as a patient, I think MRD negativity for some standard period of time (5 years? 10 years?) has to be part of the definition. If any test reveals some myeloma cells in me, I certainly won't think I am cured. (Of course, when you talk about MRD negativity, you need an agreed-upon test and standard procedures, which we don't have yet.) And if some product of myeloma cells, such as a non-zero M-spike, is found, then I wouldn't be able to rest easy and think of myself as cured either.
That said, perhaps the only way to know you're cured of multiple myeloma is what my myeloma specialist said – he wants me to die of something other than multiple myeloma. The only problem with that is you're not around very long to celebrate being cured.
Mike
I've been following this thread with interest. Now I'm finally ready to jump into the fray.
Mostly I want to comment on the recent (2016) posts in this thread. Like Duckjibe, I agree that Mark11's posts have been important contributions to the Forum. Mark is coming from a very different perspective on things than I am. I'm "middle aged" for multiple myeloma, and my treatment so far has been more like what one would consider "standard of care" treatment, including induction, auto SCT, consolidation, and maintenance. So I appreciate hearing Mark's views.
In my opinion, one of the things that would really contribute toward finding a multiple myeloma cure is agreeing what "cure" means. For example, in one of Mark11's posts early in this thread, "cure" seems to be operationally defined as >10 years progression-free survival (PFS). In another paper Mark11 referenced later in the thread, "cure" is defined as "durable PCR-negativity." But I don't think "durable" was defined there. In the Barlogie et al paper that MrPotatoHead referenced just above this post, well, I've read that paper twice, once in 2014 when it came out and again just now, and I still do not know how they actually define "cure." In addition to these various definitions, we have the Black Swan effort, which is yet another approach toward defining "cure."
I'm no doctor or medical researcher, but as a retired scientist and engineer, it seems to me that it would be helpful if multiple myeloma researchers and clinicians could agree on a single operational definition of "multiple myeloma cure," at least for the next 5 years or so. That would at least get people talking the same language.
I don't know what the "right" definition is. But as a patient, I think MRD negativity for some standard period of time (5 years? 10 years?) has to be part of the definition. If any test reveals some myeloma cells in me, I certainly won't think I am cured. (Of course, when you talk about MRD negativity, you need an agreed-upon test and standard procedures, which we don't have yet.) And if some product of myeloma cells, such as a non-zero M-spike, is found, then I wouldn't be able to rest easy and think of myself as cured either.
That said, perhaps the only way to know you're cured of multiple myeloma is what my myeloma specialist said – he wants me to die of something other than multiple myeloma. The only problem with that is you're not around very long to celebrate being cured.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55