I'm full of questions today!
I have been reading a couple of recent stories quoting Dr. James R. Berenson and his statements that he no longer performs transplants and that, with so many different drug therapies available, he believes that patients can achieve the same quality of life / remission with drugs as with transplant.
I'm wondering, though, how he is regarded. His organization is independent and, while this is not necessarily a bad thing, I'm curious as to how his research / opinions are received by the more mainstream myeloma specialists who work together in hospital / clinical research settings.
I also wonder if he has a particular connection with drug companies which may skew his opinions.
This is one link I found:
Multiple Myeloma: ‘Old Rules’ No Longer Apply, Oncology Times, April 2014.
Thanks!
Karen
Forums
Re: Dr. James Berenson
Berenson is one of my docs.
He conducts his own research and participates in trials and conducts many of his own trials of new drug therapies.
He greatly values a patient's QOL and OS, which really shapes his overall philosophy on chemo treatment and transplants.
I am going to paraphrase what he told me regarding his philosophy on transplants. He did used to believe that transplants were the only game in town. But with the advent of the new novel drugs, in concert with some of the older drugs, he truly believes that going down a drug-only approach will in fact provide better QOL and equal, if not better OS than ASCT. He also believes that the entire non-specific "scorch and burn" process of high dose chemo as part of the ASCT process will end up limiting one's therapy choices down the line, while obviously impacting QOL for many months (if not longer). He also believes that in some cases, ASCTs will worsen a patient's multiple myeloma disease.
Regarding drug treatment, he also tailors drug combinations to specific patients and will utilize lower doses or modified dosing schedules to help maintain a high QOL while still addressing the multiple myeloma. He is also not a fan of initiating early treatment unless specific symptoms warrants it.
My local onc (who recommends transplants to some of his patients) also respects him and would be happy to take direction from him regarding a treatment plan ... should I ever require it.
You can love him or call him crazy. We all can choose which doctors we want to go and which type of treatment philosophy we want to embrace. I'm personally delighted and thankful to have these kinds of choices available to me.
He conducts his own research and participates in trials and conducts many of his own trials of new drug therapies.
He greatly values a patient's QOL and OS, which really shapes his overall philosophy on chemo treatment and transplants.
I am going to paraphrase what he told me regarding his philosophy on transplants. He did used to believe that transplants were the only game in town. But with the advent of the new novel drugs, in concert with some of the older drugs, he truly believes that going down a drug-only approach will in fact provide better QOL and equal, if not better OS than ASCT. He also believes that the entire non-specific "scorch and burn" process of high dose chemo as part of the ASCT process will end up limiting one's therapy choices down the line, while obviously impacting QOL for many months (if not longer). He also believes that in some cases, ASCTs will worsen a patient's multiple myeloma disease.
Regarding drug treatment, he also tailors drug combinations to specific patients and will utilize lower doses or modified dosing schedules to help maintain a high QOL while still addressing the multiple myeloma. He is also not a fan of initiating early treatment unless specific symptoms warrants it.
My local onc (who recommends transplants to some of his patients) also respects him and would be happy to take direction from him regarding a treatment plan ... should I ever require it.
You can love him or call him crazy. We all can choose which doctors we want to go and which type of treatment philosophy we want to embrace. I'm personally delighted and thankful to have these kinds of choices available to me.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dr. James Berenson
Hi Multibilly,
When you go to Berenson does he have any statistics/facts to back up his "philosophy" or do you just take his word for it?
For example, any study that shows this to be true:
"He also believes that the entire non-specific "scorch and burn" process of high dose chemo as part of the ASCT process will end up limiting one's therapy choices down the line.."
They have been using high dose chemotherapy for years. Is there a peer reviewed study that shows that to be true? Is it true that someone that uses high dose therapy and gets a long therapy break is less able to get treatment than someone that has been on never ending cycles of myeloma drugs like lenalidomide? Is there a peer reviewed study that shows this or is this just a "philosophy"?
In a peer reviewed paper he wrote:
"Most patients with multiple myeloma in both the frontline and relapsed/refractory settings are now treated with a combination of dexamethasone with the proteasome inhibitor bortezomib and/or an immunomodulatory agent thalidomide or lenalidomide. However, alkylating agents including melphalan, cyclophosphamide and most recently bendamustine as well as anthracyclines, especially the pegylated liposomal doxorubicin, have shown high response rates and prolonged remissions when combined with these agents. "
http://www.ncbi.nlm.nih.gov/pubmed/22871979
Do alkylators like melphalan and Cytoxan not have side effects when given in standard doses since it is clear Berenson uses them? Do they magically become "targeted" therapies if given in standard doses since they are "scorch and burn" when given in high doses before transplants? I had "scorch and burn" therapy twice in 2011 but in 2014 all my blood counts are in the normal range and all my immunology panel counts in the normal range. I guess the "scorch and burn" wears off if you stay off the poison and steroids for 3 years.
"...he truly believes that going down a drug-only approach will in fact provide better QOL and equal, if not better OS than ASCT."
I can put up peer reviewed studies that show patients that have done high dose chemotherapy prior to allo transplant (particularly t cell depleted allos) having a health related quality of life on par with the general population over the long term and those patients did use high dose therapy. Those studies seem to counter this particular "treatment philosophy". Any peer reviewed study that show patients that are on never ending cycle of myeloma drugs having HR QOL on par with the general population over the long term? By the way, auto sct is a drug only approach. There is no immunotherapy associated with auto sct. The therapy of an auto sct is a high dose of drugs.
"Philosophy" is great but some of these things he is talking about should have peer reviewed studies to back up their validity. Do you know if any exist? I do agree that it is great to have different treatments to choose from. If I had to take drugs every month with no end in sight that have all the side effects associated with the myeloma therapies and I had no chance of being cured I would not be in as great of a frame of mind as I am now.
Mark
When you go to Berenson does he have any statistics/facts to back up his "philosophy" or do you just take his word for it?
For example, any study that shows this to be true:
"He also believes that the entire non-specific "scorch and burn" process of high dose chemo as part of the ASCT process will end up limiting one's therapy choices down the line.."
They have been using high dose chemotherapy for years. Is there a peer reviewed study that shows that to be true? Is it true that someone that uses high dose therapy and gets a long therapy break is less able to get treatment than someone that has been on never ending cycles of myeloma drugs like lenalidomide? Is there a peer reviewed study that shows this or is this just a "philosophy"?
In a peer reviewed paper he wrote:
"Most patients with multiple myeloma in both the frontline and relapsed/refractory settings are now treated with a combination of dexamethasone with the proteasome inhibitor bortezomib and/or an immunomodulatory agent thalidomide or lenalidomide. However, alkylating agents including melphalan, cyclophosphamide and most recently bendamustine as well as anthracyclines, especially the pegylated liposomal doxorubicin, have shown high response rates and prolonged remissions when combined with these agents. "
http://www.ncbi.nlm.nih.gov/pubmed/22871979
Do alkylators like melphalan and Cytoxan not have side effects when given in standard doses since it is clear Berenson uses them? Do they magically become "targeted" therapies if given in standard doses since they are "scorch and burn" when given in high doses before transplants? I had "scorch and burn" therapy twice in 2011 but in 2014 all my blood counts are in the normal range and all my immunology panel counts in the normal range. I guess the "scorch and burn" wears off if you stay off the poison and steroids for 3 years.
"...he truly believes that going down a drug-only approach will in fact provide better QOL and equal, if not better OS than ASCT."
I can put up peer reviewed studies that show patients that have done high dose chemotherapy prior to allo transplant (particularly t cell depleted allos) having a health related quality of life on par with the general population over the long term and those patients did use high dose therapy. Those studies seem to counter this particular "treatment philosophy". Any peer reviewed study that show patients that are on never ending cycle of myeloma drugs having HR QOL on par with the general population over the long term? By the way, auto sct is a drug only approach. There is no immunotherapy associated with auto sct. The therapy of an auto sct is a high dose of drugs.
"Philosophy" is great but some of these things he is talking about should have peer reviewed studies to back up their validity. Do you know if any exist? I do agree that it is great to have different treatments to choose from. If I had to take drugs every month with no end in sight that have all the side effects associated with the myeloma therapies and I had no chance of being cured I would not be in as great of a frame of mind as I am now.
Mark
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Mark
Re: Dr. James Berenson
Mark,
Interesting comments. I would like to weigh in on one of your points: whether ASCT will limit future therapy choices.
That was one of my concerns while trying to decide whether to proceed with an ASCT. I went for a second opinion at Johns Hopkins where their current approach is to rarely recommend an ASCT. I asked the myeloma doctor I saw that very question. She said that she seriously doubted whether ASCT would limit future therapy choices.
Interesting comments. I would like to weigh in on one of your points: whether ASCT will limit future therapy choices.
That was one of my concerns while trying to decide whether to proceed with an ASCT. I went for a second opinion at Johns Hopkins where their current approach is to rarely recommend an ASCT. I asked the myeloma doctor I saw that very question. She said that she seriously doubted whether ASCT would limit future therapy choices.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Dr. James Berenson
Hey Mark,
I knew this was likely coming. No, I've not asked him for these stats and if they were peer reviewed. I simply shared what I heard from him during one of my visits and I'm not eager to get into a "this-study-versus-that-study" discussion or yet another transplant-versus- no-transplant thread.
In full disclosure, I just happen to share his philosophy about transplants in general ... which I know you already know
While I will not absolutely say "no" to a transplant since I don't know what the future will hold, I can say with certainty that it would never be my frontline or first R/R choice, regardless of what various studies may show. I am simply unwilling to go through the process and I just don't personally believe in it. But everyone needs to make their own choice and I fully respect the decisions each of us on this forum makes.
I fully realize that you carefully research items and only consider peer-reviewed studies from legit sources...and you've had good success with your allo and are doing quite well now. I also respect that.
Take care Mark ....
I knew this was likely coming. No, I've not asked him for these stats and if they were peer reviewed. I simply shared what I heard from him during one of my visits and I'm not eager to get into a "this-study-versus-that-study" discussion or yet another transplant-versus- no-transplant thread.
In full disclosure, I just happen to share his philosophy about transplants in general ... which I know you already know
While I will not absolutely say "no" to a transplant since I don't know what the future will hold, I can say with certainty that it would never be my frontline or first R/R choice, regardless of what various studies may show. I am simply unwilling to go through the process and I just don't personally believe in it. But everyone needs to make their own choice and I fully respect the decisions each of us on this forum makes.
I fully realize that you carefully research items and only consider peer-reviewed studies from legit sources...and you've had good success with your allo and are doing quite well now. I also respect that.
Take care Mark ....
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dr. James Berenson
Hi Goldmine,
I was not planning on doing an auto prior to my allo. I did it because my insurance co only paid for tandem auto - allo and would not pay for induction directly to allo. There are downsides to doing an auto and I did not want to do one but long term QOL or it interfering with a patients ability to do future therapy do not appear to be reasons I can find in peer reviewed studies. In the short term QOL is clearly lower for patients that do an auto (and obviously an allo) than those that do not. The difference is in the long term and there are QOL studies that show that long term cancer survivors that used high dose chemotherapy have a very good QOL. I have asked multiple advocates of the non-transplant "philosophy" to show me a peer reviewed study that shows QOL on par with the general population of patients that take never ending cycles of lenalidomide, etc and so far no one can show me one.
Good luck with everything moving forward.
Mark
I was not planning on doing an auto prior to my allo. I did it because my insurance co only paid for tandem auto - allo and would not pay for induction directly to allo. There are downsides to doing an auto and I did not want to do one but long term QOL or it interfering with a patients ability to do future therapy do not appear to be reasons I can find in peer reviewed studies. In the short term QOL is clearly lower for patients that do an auto (and obviously an allo) than those that do not. The difference is in the long term and there are QOL studies that show that long term cancer survivors that used high dose chemotherapy have a very good QOL. I have asked multiple advocates of the non-transplant "philosophy" to show me a peer reviewed study that shows QOL on par with the general population of patients that take never ending cycles of lenalidomide, etc and so far no one can show me one.
Good luck with everything moving forward.
Mark
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Mark
Re: Dr. James Berenson
Hi Multibilly,
As I said above, I was not planning on doing an auto because I was trying to use as little drugs as possible before relying on the immunotherapy of my donors immune system to keep me in remission so I would not have done one if I had my way. I do have to wonder why a blood cancer patient would make a comment like this:
"He also believes that the entire non-specific "scorch and burn" process of high dose chemo....."
Last time I checked "scorch and burn" chemotherapy followed up with the immunotherapy of a donor immune system can cure all blood cancers, including myeloma. I never realized curative therapy for blood cancer patients was a bad thing that should be made fun of and it is really surprising to see it on a message board for a cancer that allo transplant is the only accepted cure for.
Mark
As I said above, I was not planning on doing an auto because I was trying to use as little drugs as possible before relying on the immunotherapy of my donors immune system to keep me in remission so I would not have done one if I had my way. I do have to wonder why a blood cancer patient would make a comment like this:
"He also believes that the entire non-specific "scorch and burn" process of high dose chemo....."
Last time I checked "scorch and burn" chemotherapy followed up with the immunotherapy of a donor immune system can cure all blood cancers, including myeloma. I never realized curative therapy for blood cancer patients was a bad thing that should be made fun of and it is really surprising to see it on a message board for a cancer that allo transplant is the only accepted cure for.
Mark
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Mark
Re: Dr. James Berenson
Be clear that I paraphrased Dr. Berenson. "Scorch and Burn" was my choice of words and I didn't choose those words to be mocking, but rather to convey the seriousness and gravity of that process. I simply don't personally believe in the entire process of high dose chemo and radiation to wipe out one's myeloma cells and immune system in prep for a transplant, whether it be an allo or auto.
I'm also not condemning autos or allos for others. I am simply saying I will not consider it as an option for myself....that is why I gravitate to the thinking of specialists like Dr. Berenson and Dr. Landgren.
I'm happy for your success
That's all.
I'm also not condemning autos or allos for others. I am simply saying I will not consider it as an option for myself....that is why I gravitate to the thinking of specialists like Dr. Berenson and Dr. Landgren.
I'm happy for your success
That's all.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dr. James Berenson
Karen,
To my knowledge, Dr. Berenson uses the full range of FDA and clinical trial proven treatments for myeloma based on sound science, he just leaves out stem cell transplant as an option for reasons already stated.
If you do go with Dr. Berenson’s approach, that does not rule out a stem cell transplant indefinitely. If at a later time it appears that a SCT may be the best thing to do based on medical advice, say from a second opinion, you could still pursue that.
I do remember reading on the Beacon about studies comparing early SCT to late SCT and no SCT. I do not remember all results, but they all involved therapy that was meaningfully effective.
My view is as we learn more about myeloma and how the therapies work is to tailor treatment specific to a patient’s case and how they respond to treatment. This may mean early, late or no SCT based on the patient's risk from known chromosome deficiencies and how they respond to initial treatment.
To my knowledge, Dr. Berenson uses the full range of FDA and clinical trial proven treatments for myeloma based on sound science, he just leaves out stem cell transplant as an option for reasons already stated.
If you do go with Dr. Berenson’s approach, that does not rule out a stem cell transplant indefinitely. If at a later time it appears that a SCT may be the best thing to do based on medical advice, say from a second opinion, you could still pursue that.
I do remember reading on the Beacon about studies comparing early SCT to late SCT and no SCT. I do not remember all results, but they all involved therapy that was meaningfully effective.
My view is as we learn more about myeloma and how the therapies work is to tailor treatment specific to a patient’s case and how they respond to treatment. This may mean early, late or no SCT based on the patient's risk from known chromosome deficiencies and how they respond to initial treatment.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Dr. James Berenson
Does anybody know if Dr. Berenson is still using arsenic trioxide? Is that a "targeted" myeloma therapy? I wonder how QOL is while taking arsenic?
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Mark
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