I appreciate this thread and the suggestion that there needs to be more discussion about younger patients. I myself was diagnosed with multiple myeloma in February of this year, right around the time of my 31st birthday. I am now ~20 days post auto-transplant. I had talks with my oncologists about both auto and allo transplants, but they both agreed that since I was pretty asymptomatic, the auto route would be the better approach. They told me the auto transplant doesn't rule out an allo transplant later on, if I needed, but both of my oncologists were optimistic that the T-cell therapies being investigated would be available in the coming years and potentially make allo transplantation unnecessary.
I'll admit that I probably didn't do as much research as I should have before agreeing to the auto transplant, but I respect and trust my oncologists.
Forums
-
ddfbjlee - Name: Bryan
- Who do you know with myeloma?: Me!
- When were you/they diagnosed?: February 2015
- Age at diagnosis: 31
Re: Progress toward a multiple myeloma cure?
Hi TerriJ and everyone,
Thanks for the responses. I actually wrote that post with TerriJ in mind. She had mentioned to me previously that allo transplant was never discussed with her early and that was one reason for the post. Like ddfbjlee, I doubt many would do the allo early, but at least all therapy options were discussed with him.
The reason for the post was not to say that allo transplants are great or to brag that I am doing well. It was to just remind younger patients of a few things. When you hear myeloma doctors discussing therapies and progress, know that they are thinking of older patients that make up the majority of their patients. Even when they discuss transplant-eligible patients, they are likely not thinking of someone like me who was diagnosed in their early 40's. Also note that while some patients can be cured (or functionally cured) via their initial therapy, know that it is a rare myeloma patient that enjoys a long drug-free remission after they relapse.
I do have some comments about some of the excellent discussion above. One of TerriJ's I really want to discuss. Before I do that, I am curious what you think my answer to the question of if there was progress toward curing more younger myeloma patients in the last 5 years.
One hint: Those who are regular readers probably realized this already, but the term "myeloma thought leaders" was not used as a compliment to how they treat. Read my initial post and what the studies said and it should be obvious what I think.
Mark
Thanks for the responses. I actually wrote that post with TerriJ in mind. She had mentioned to me previously that allo transplant was never discussed with her early and that was one reason for the post. Like ddfbjlee, I doubt many would do the allo early, but at least all therapy options were discussed with him.
The reason for the post was not to say that allo transplants are great or to brag that I am doing well. It was to just remind younger patients of a few things. When you hear myeloma doctors discussing therapies and progress, know that they are thinking of older patients that make up the majority of their patients. Even when they discuss transplant-eligible patients, they are likely not thinking of someone like me who was diagnosed in their early 40's. Also note that while some patients can be cured (or functionally cured) via their initial therapy, know that it is a rare myeloma patient that enjoys a long drug-free remission after they relapse.
I do have some comments about some of the excellent discussion above. One of TerriJ's I really want to discuss. Before I do that, I am curious what you think my answer to the question of if there was progress toward curing more younger myeloma patients in the last 5 years.
One hint: Those who are regular readers probably realized this already, but the term "myeloma thought leaders" was not used as a compliment to how they treat. Read my initial post and what the studies said and it should be obvious what I think.
Mark
-
Mark11
Re: Progress toward a multiple myeloma cure?
My frustration during this whole process was that the "myeloma thought leaders" each have different opinions on treatment. We were thinking of going to Sloan Kettering before things progressed so rapidly, but were told at Penn that their philosophy on transplant would be different. That would have thrown a third differing opinion into the mix. All the doctors we met sincerely thought their treatment was the best, but such differing opinions put more stress on the patient and caregiver. I spent many a night trying to find a consensus of what was best to do but could not find one.
My feeling in hindsight is that for someone who has especially aggressive disease, many of the new drugs only work for short periods of time ... if at all. That is why though it would have been risky she was ready to pursue an allo with her brother as half match in January until her pulmonary and some other things deemed her not eligible. That is when we switched to hope of T cell therapy but again things progressed so swiftly.
My feeling in hindsight is that for someone who has especially aggressive disease, many of the new drugs only work for short periods of time ... if at all. That is why though it would have been risky she was ready to pursue an allo with her brother as half match in January until her pulmonary and some other things deemed her not eligible. That is when we switched to hope of T cell therapy but again things progressed so swiftly.
Re: Progress toward a multiple myeloma cure?
TerriJ
I wholeheartedly confer with your frustration on lack of real consensus or understanding of what works best and for whom with this disease. I too feel the thought leaders in myeloma,, who rarely 100% agree on the best approach for an individual, play in the dark using 'prescriptive' approaches.
I personally find it unhelpful to have patients over selling their treatment approach because it worked very well for them so could do so for others. That is not how myeloma works in individuals as we repeatedly see.
People mostly trust their clinicians and if they have a particularly good one and easily respond to the treatment given are inclined to think the same would be the case for others. In a disease where each person has an individual genetic 'fingerprint' with ability to benefit from a particular treatment we and the clinicians are guessing a lot of the time.
In my view clinical trials funded by pharma or institutions supported by it mislead by using medians / averages in reporting results which have strict exclusion criteria and very broad spectrum of outcome in terms of overall survival. We never even know in any detail why a patient died or left a trial. I hear from my doctors that Revlimid is well tolerated, but also find that is not the case for all because of the level of myelosuppression toxicity. Why some people's blood counts drop and many others do not have this remains to be better explained by the drug company.What are the clinical features of he patients who experience severe myelosuppression?
I feel that really however much research I do it will not make much difference as both availability of costly treatments will lead to 'tinkering' with drug combinations and the approach taken to treatment cannot predict outcome for an individual. Even hindsight does not help because it is unclear if another treatment had been given the outcome would have been superior. It is too complex. I think the best we can do is understand our disease in terms of risk profile, the options for treatment, side affects of treatment, talk with other patients and then make a decision and accept it. If there was a cure things would be different.
Edna
I wholeheartedly confer with your frustration on lack of real consensus or understanding of what works best and for whom with this disease. I too feel the thought leaders in myeloma,, who rarely 100% agree on the best approach for an individual, play in the dark using 'prescriptive' approaches.
I personally find it unhelpful to have patients over selling their treatment approach because it worked very well for them so could do so for others. That is not how myeloma works in individuals as we repeatedly see.
People mostly trust their clinicians and if they have a particularly good one and easily respond to the treatment given are inclined to think the same would be the case for others. In a disease where each person has an individual genetic 'fingerprint' with ability to benefit from a particular treatment we and the clinicians are guessing a lot of the time.
In my view clinical trials funded by pharma or institutions supported by it mislead by using medians / averages in reporting results which have strict exclusion criteria and very broad spectrum of outcome in terms of overall survival. We never even know in any detail why a patient died or left a trial. I hear from my doctors that Revlimid is well tolerated, but also find that is not the case for all because of the level of myelosuppression toxicity. Why some people's blood counts drop and many others do not have this remains to be better explained by the drug company.What are the clinical features of he patients who experience severe myelosuppression?
I feel that really however much research I do it will not make much difference as both availability of costly treatments will lead to 'tinkering' with drug combinations and the approach taken to treatment cannot predict outcome for an individual. Even hindsight does not help because it is unclear if another treatment had been given the outcome would have been superior. It is too complex. I think the best we can do is understand our disease in terms of risk profile, the options for treatment, side affects of treatment, talk with other patients and then make a decision and accept it. If there was a cure things would be different.
Edna
Re: Progress toward a multiple myeloma cure?
I have been following this discussion with much interest. I really have nothing to contribute other than to agree with Edna's last comment above. It summarizes the difficulty in dealing with this disease. When I explain it to folks who know nothing about myeloma, I say: you could present five myeloma experts with the same set of patient characteristics and history and they may well recommend five different plans of attack.
As Edna says, all that we can do is gather the most information possible and make the best guess that we can based on that information and our own instincts.
As Edna says, all that we can do is gather the most information possible and make the best guess that we can based on that information and our own instincts.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Progress toward a multiple myeloma cure?
Makes you wonder if the myeloma specialists are really experts or just using their best "guess" based on their experience, i.e. highly educated tinkerers.
It was interesting, I was watching the 2nd episode of the Ken Burns PBS documentary on "Cancer - The Emperor of all Maladies". In that episode they concentrated on how much during the 1970s, despite a declared war on cancer, very little progress was made. The episode's concentration was on the treatment of breast cancer and how most clinicians during the 1950s through the 1970s thought that the radical mastectomy was the gold standard. However, later test showed that it was no more effective than the local lumpectomy in overall survival. Then, during the 1980s, the clinicians were convinced that massive chemo followed by an ASCT was the way to go.(sound familiar). However, once again, the overall survival rates were not impacted. The cancer came back.
Just because most clinicians "believe" that a given treatment works and most follow it, has in almost all cancers been proven to be no more effective than a more minimalist approach.
The current belief is to use very aggressive treatments to get a MRD of -0- or close to it. Thus very aggressive induction followed by double ASCT etc. is this current belief. However, time and again these risky aggressive treatments do not show any overall survival benefit. We are unfortunately still in a period of tinkering and best guessers. Cancer is still elusive.
It was interesting, I was watching the 2nd episode of the Ken Burns PBS documentary on "Cancer - The Emperor of all Maladies". In that episode they concentrated on how much during the 1970s, despite a declared war on cancer, very little progress was made. The episode's concentration was on the treatment of breast cancer and how most clinicians during the 1950s through the 1970s thought that the radical mastectomy was the gold standard. However, later test showed that it was no more effective than the local lumpectomy in overall survival. Then, during the 1980s, the clinicians were convinced that massive chemo followed by an ASCT was the way to go.(sound familiar). However, once again, the overall survival rates were not impacted. The cancer came back.
Just because most clinicians "believe" that a given treatment works and most follow it, has in almost all cancers been proven to be no more effective than a more minimalist approach.
The current belief is to use very aggressive treatments to get a MRD of -0- or close to it. Thus very aggressive induction followed by double ASCT etc. is this current belief. However, time and again these risky aggressive treatments do not show any overall survival benefit. We are unfortunately still in a period of tinkering and best guessers. Cancer is still elusive.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Progress toward a multiple myeloma cure?
Hi Ron,
The topic of this thread is NOT aggressive therapy vs minimalist therapy. The topic is has there been progress toward curing more younger myeloma patients in the last 5 years. Do you have any thoughts on that topic? Since you are a long time poster here I would be curious about that and I am sure others would be as well.
Did you catch episode 1? The main topic was showing how Dr. Farber put the first pediatric leukemia patient (ALL) into remission with a single drug but that patient and almost all his others relapsed. Dr. Emil Frei at the NIH started using aggressive upfront therapy and started curing some patients. Pediatric ALL now has an 80-90% cure rate using aggressive upfront therapy. Sounds like the "good guys" are winning that war thanks to Dr. Frei and his starting to use aggressive upfront therapy.
Really? 12% of patients in the US did an auto as part of their initial therapy in 2010. I could not imagine more than 2-3% of patients do upfront tandem autos in the US. Are there a lot of posters here that did tandem autos as part of their initial therapy? No studies show an overall survival benefit for patients that do autos compared to those that do not do them?
No one wants to take a guess at what my answer to the question is? Second question to see if anyone was observant. I purposely wrote a sentence in my original post that I was hoping someone would point out as contradicting what I always say. Anybody know which sentence it was? It also contradicts something that the allo transplant study discussed.
The comment that TerriJ made that seems to summarize a lot of the discussion and that I find so interesting is:
"Some believe in transplant, some lean more towards new therapies. This makes it extremely difficult for the patient."
Thanks again to everyone that participated in this thread.
Mark.
The topic of this thread is NOT aggressive therapy vs minimalist therapy. The topic is has there been progress toward curing more younger myeloma patients in the last 5 years. Do you have any thoughts on that topic? Since you are a long time poster here I would be curious about that and I am sure others would be as well.
Did you catch episode 1? The main topic was showing how Dr. Farber put the first pediatric leukemia patient (ALL) into remission with a single drug but that patient and almost all his others relapsed. Dr. Emil Frei at the NIH started using aggressive upfront therapy and started curing some patients. Pediatric ALL now has an 80-90% cure rate using aggressive upfront therapy. Sounds like the "good guys" are winning that war thanks to Dr. Frei and his starting to use aggressive upfront therapy.
"The current belief is to use very aggressive treatments to get a MRD of -0- or close to it. Thus very aggressive induction followed by double ASCT etc. is this current belief. However, time and again these risky aggressive treatments do not show any overall survival benefit."
Really? 12% of patients in the US did an auto as part of their initial therapy in 2010. I could not imagine more than 2-3% of patients do upfront tandem autos in the US. Are there a lot of posters here that did tandem autos as part of their initial therapy? No studies show an overall survival benefit for patients that do autos compared to those that do not do them?
No one wants to take a guess at what my answer to the question is? Second question to see if anyone was observant. I purposely wrote a sentence in my original post that I was hoping someone would point out as contradicting what I always say. Anybody know which sentence it was? It also contradicts something that the allo transplant study discussed.
The comment that TerriJ made that seems to summarize a lot of the discussion and that I find so interesting is:
"Some believe in transplant, some lean more towards new therapies. This makes it extremely difficult for the patient."
Thanks again to everyone that participated in this thread.
Mark.
-
Mark11
Re: Progress toward a multiple myeloma cure?
Mark11
I think your original post and this entire thread is very useful, and if I were a younger patient I would most certainly want to seriously explore an allo as an option. It does seem that, between auto and allo, allo would have the best chance of cure, since one is not only not reinfusing myeloma cells when your own stem cells are returned to you during an auto, but also because you are getting someone else's immune system, which is more likely to go after your myeloma cells as invaders, which your own immune system was unable to do.
I do agree with Edna and Terrij about the confusion caused by the lack of consensus about the best treatment approach among myeloma experts. It is a situation that makes it extremely difficult for myeloma victims and their caregivers to arrive at an informed decision.
Ron had stated in his post that there is no evidence that auto stem cell transplants confer better OS numbers than drug/chemo therapy alone, and I believe from your reply that you dispute that. Do you have any studies that you can cite? I ask because all I have been able to find are studies that show longer remissions for those having an auto versus doing just drugs/chemo. I am currently struggling with the decision on whether to do an auto myself.
But I think that if I were young, I absolutely would want to consider an allo transplant. Perhaps it is riskier, but it does seem to be the only way to get to cure, versus remission.
I think your original post and this entire thread is very useful, and if I were a younger patient I would most certainly want to seriously explore an allo as an option. It does seem that, between auto and allo, allo would have the best chance of cure, since one is not only not reinfusing myeloma cells when your own stem cells are returned to you during an auto, but also because you are getting someone else's immune system, which is more likely to go after your myeloma cells as invaders, which your own immune system was unable to do.
I do agree with Edna and Terrij about the confusion caused by the lack of consensus about the best treatment approach among myeloma experts. It is a situation that makes it extremely difficult for myeloma victims and their caregivers to arrive at an informed decision.
Ron had stated in his post that there is no evidence that auto stem cell transplants confer better OS numbers than drug/chemo therapy alone, and I believe from your reply that you dispute that. Do you have any studies that you can cite? I ask because all I have been able to find are studies that show longer remissions for those having an auto versus doing just drugs/chemo. I am currently struggling with the decision on whether to do an auto myself.
But I think that if I were young, I absolutely would want to consider an allo transplant. Perhaps it is riskier, but it does seem to be the only way to get to cure, versus remission.
-
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?
Very interesting discussion and thanks to Mark for starting it off.
I wanted to comment on the issue regarding the differences of opinion among myeloma experts. It seems to me that this is due to the state of flux that characterizes myeloma therapy right now. Mark correctly notes that, in some ways, things move slowly in this realm. From the clinician's standpoint, though, this scene is evolving remarkably quickly. There are a plethora of treatment options to choose from and new studies are constantly being published, adding more data to what's already out there. Each myeloma expert must choose an approach without any of them being clearly and objectively superior.
Two years ago, when I was deciding whether or not to go with an auto stem cell transplant, I spoke with Jeff Wolf, who's considered one of the top myeloma experts in northern California. He told me that at that time, the therapies recommended by the top myeloma doctors ranged from the Arkansas approach, with tandem auto transplants and intense drug therapy, to a guy in southern California who did not believe that upfront auto transplants were necessary, to the rest who more or less fell somewhere in between the two. All of those experts have reason to believe that their approach is the best available.
Sometime in the future, a treatment approach that is clearly superior will emerge. With any luck, it will provide a cure. Until then, myeloma patients will continue to have a range of treatments to choose from and difficult choices to make.
I wanted to comment on the issue regarding the differences of opinion among myeloma experts. It seems to me that this is due to the state of flux that characterizes myeloma therapy right now. Mark correctly notes that, in some ways, things move slowly in this realm. From the clinician's standpoint, though, this scene is evolving remarkably quickly. There are a plethora of treatment options to choose from and new studies are constantly being published, adding more data to what's already out there. Each myeloma expert must choose an approach without any of them being clearly and objectively superior.
Two years ago, when I was deciding whether or not to go with an auto stem cell transplant, I spoke with Jeff Wolf, who's considered one of the top myeloma experts in northern California. He told me that at that time, the therapies recommended by the top myeloma doctors ranged from the Arkansas approach, with tandem auto transplants and intense drug therapy, to a guy in southern California who did not believe that upfront auto transplants were necessary, to the rest who more or less fell somewhere in between the two. All of those experts have reason to believe that their approach is the best available.
Sometime in the future, a treatment approach that is clearly superior will emerge. With any luck, it will provide a cure. Until then, myeloma patients will continue to have a range of treatments to choose from and difficult choices to make.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Progress toward a multiple myeloma cure?
Hi Mike F
A good post on the position of treatment options at this time- from the perspective of the medical experts.
An area I think that would give us as patients a more realistic idea of the experience of different treatments is from the patients and their families who have been involved since diagnosis in the last 5 years.
Aside from the Opinions section of the Beacon most posters in the Forum seek answers to questions / issues affecting them. Many you never hear from again as to what actually happened when a particular treatment path was taken or not. Posts like Terrij's really well inform us of the difficulties. KSash has given much detail on his treatment over a long period and issues that made things worse or improved his performance. But we do not have others doing this in detail to show how common or not side affects are and for whom. Continuity helps give a stronger picture. Mark 11 has stood his researched ground on allos for young patients.
I agree with Mark that definitive cures in myeloma have not emerged regardless of the new drug regimes. Longer survival- for some possibly. But cures in cancer are rare.
Until a cure, for me baseline information from patients regarding the myeloma, age, health/ physical performance status prior to treatment, the treatment regimes / doseages, problems encountered and how dealt with tell me more than the clinical trials.
I do not know how many people with myeloma work and if these are only transplant recipients or others whose immune systems objectively remain good. We do no know how many cope with the 'incurable' disease alone and whether this affects morbidity and mortality.
When people start to decline we have no idea often of how many prior treatments, what treatments, for how long before the decline set in. When I am at clinic I try to discuss people's actual experiences, if the opportunity arises, to compare with mine.
All we have for now is the thought leaders offering widely varying treatment options and extolling these at a time of great flux in information on what works and for whom.
A good post on the position of treatment options at this time- from the perspective of the medical experts.
An area I think that would give us as patients a more realistic idea of the experience of different treatments is from the patients and their families who have been involved since diagnosis in the last 5 years.
Aside from the Opinions section of the Beacon most posters in the Forum seek answers to questions / issues affecting them. Many you never hear from again as to what actually happened when a particular treatment path was taken or not. Posts like Terrij's really well inform us of the difficulties. KSash has given much detail on his treatment over a long period and issues that made things worse or improved his performance. But we do not have others doing this in detail to show how common or not side affects are and for whom. Continuity helps give a stronger picture. Mark 11 has stood his researched ground on allos for young patients.
I agree with Mark that definitive cures in myeloma have not emerged regardless of the new drug regimes. Longer survival- for some possibly. But cures in cancer are rare.
Until a cure, for me baseline information from patients regarding the myeloma, age, health/ physical performance status prior to treatment, the treatment regimes / doseages, problems encountered and how dealt with tell me more than the clinical trials.
I do not know how many people with myeloma work and if these are only transplant recipients or others whose immune systems objectively remain good. We do no know how many cope with the 'incurable' disease alone and whether this affects morbidity and mortality.
When people start to decline we have no idea often of how many prior treatments, what treatments, for how long before the decline set in. When I am at clinic I try to discuss people's actual experiences, if the opportunity arises, to compare with mine.
All we have for now is the thought leaders offering widely varying treatment options and extolling these at a time of great flux in information on what works and for whom.