Forums
Re: Dr. James Berenson
I find that interesting . Taking arsenic does sound scary but I would probably consider it if I'd run out of other options. It's good to know that there are many combinations available, especially for those of us with aggressive disease. I wonder what year this was made and if he still uses this therapy.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Dr. James Berenson
Hi Joy,
Trisenox (arsenic trioxide) is now an FDA-approved drug, but its approval is for the treatment of acute promyelocytic leukemia. Here is the prescribing information from the FDA website:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2010/021248s008s009lbl.pdf
My recollection is that the clinical trials that investigated Trisenox as a potential myeloma therapy were not successful enough to allow the company to seek approval for the drug to be used as a treatment for myeloma.
That doesn't mean that the drug won't work for some patients, for at least some time. I believe the drug is occasionally used off label in the U.S. as a treatment for myeloma. I don't think, however, that it is very widely used.
Here's a Beacon article that gives a short description of a small study that investigated the drug in combination with Velcade and vitamin C:
https://myelomabeacon.org/news/2013/02/25/beacon-newsflashes-february-25-2013/
Trisenox (arsenic trioxide) is now an FDA-approved drug, but its approval is for the treatment of acute promyelocytic leukemia. Here is the prescribing information from the FDA website:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2010/021248s008s009lbl.pdf
My recollection is that the clinical trials that investigated Trisenox as a potential myeloma therapy were not successful enough to allow the company to seek approval for the drug to be used as a treatment for myeloma.
That doesn't mean that the drug won't work for some patients, for at least some time. I believe the drug is occasionally used off label in the U.S. as a treatment for myeloma. I don't think, however, that it is very widely used.
Here's a Beacon article that gives a short description of a small study that investigated the drug in combination with Velcade and vitamin C:
https://myelomabeacon.org/news/2013/02/25/beacon-newsflashes-february-25-2013/
Re: Dr. James Berenson
Thanks Terry!
Both links are very helpful. I definitely wouldn't choose this as an upfront option given the side effects. but, like I said, it's really good to know there are more options than I previously realized.
One thing that struck me as funny was the line:
"TRISENOX is contraindicated in patients who are hypersensitive to arsenic."
I could imagine a conversation with a new healthcare provider:
"Allergic to any medications?"
"No, but I'm hypersensitive to arsenic".
and I suppose falling off cliffs and getting hit by a bus......
Both links are very helpful. I definitely wouldn't choose this as an upfront option given the side effects. but, like I said, it's really good to know there are more options than I previously realized.
One thing that struck me as funny was the line:
"TRISENOX is contraindicated in patients who are hypersensitive to arsenic."
I could imagine a conversation with a new healthcare provider:
"Allergic to any medications?"
"No, but I'm hypersensitive to arsenic".
and I suppose falling off cliffs and getting hit by a bus......
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Dr. James Berenson
That is funny, Joy. Thanks for sharing.
You have to wonder how many people do NOT have a hypersensitivity to arsenic.
You have to wonder how many people do NOT have a hypersensitivity to arsenic.
Re: Dr. James Berenson
Hi Joy - Thanks for a good laugh. I did LOL when I read that!
Terry H - Thanks for the links.
Terry H - Thanks for the links.
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Mark
Re: Dr. James Berenson
Hi Karen,
My husband is a new patient of Dr. Berenson (as of last Tuesday). I have a friend who works at UCSF in their oncology department specializing in myeloma. We asked her to vet Dr. B. All of the info reported back from other doctors and staff in the field was "He is very well respected."
Best,
JR
My husband is a new patient of Dr. Berenson (as of last Tuesday). I have a friend who works at UCSF in their oncology department specializing in myeloma. We asked her to vet Dr. B. All of the info reported back from other doctors and staff in the field was "He is very well respected."
Best,
JR
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Dr. James Berenson
Dr. Berenson is clearly the champion of self promotion. A simple google search generates hundreds of youtube videos, facebook posts, interviews, but few published studies or studies where his work is cited. Not sure how much time he spends in clinic with patients because his road show is very active.
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DougC
Re: Dr. James Berenson
Diagnosed in 5 / 2012.
I went traditional Stem cell workup and harvested enough cells for FOUR (4) Procedures, after Induction with Velcade and Dex.
I told them to put 'em on ice, .....and I'd be back if I wanted to do a Stem cell.
I have a Low risk multiple myeloma. ( Pos IgG Kappa Light chain-Pos CD 20 /CD 79-- t,11-14 carotype)
Between Mayo's, Berenson, and my Local Oncologist, ...QOL and newer meds (including "pipeline Drugs") won out. It was my decision. Informed Consent Occurred.
I collected, donated / harvested cells in the time frame of April 2013.
MAYO'S SMART Stratification came out shortly thereafter. It made since then, and it makes sense now.
The first phase of Aphoresis / transplant (Cytoxan) really tore me up...so I backed off going thru a transplant. Shi--y experience--literally. (for months)
Velcade had brought down my M spike--but I wished I'd never taken that drug for all the PN I suffer from, today.
I am stable, 0.1 G/DL "M Spike", and great Kappa/ Lambda levels and ratios. On 10 MG Revlimid maintenance.
I know neither Barlogie/ UAMS and Berenson / his affiliates.
Based soley on their literature--Berenson is much closer to a regimen of conservative, rational care and QOL based treatment.
Until they can: --Come up with a treatment giving multiple myeloma an 85 % "Cure" rate; --and develop a reliable test that can confirm a "cure" has indeed taken place--my QOL and use of newer meds is my ship.
I also note that in the Interim 2 years since Induction, that a number of Oncologists have "cooled" to Transplants / Up -front transplants. I suspect that the results seen just don't support the "Transplant first--figure out later" approach to Oncology practiced in 2005.
Note: They did not have these drugs in 2005--so I am critical of no one.
It is far less profitable to Rx drugs and monitor out-patient Serums, than it is to clinically treat in-patient transplant patients.
Why would MD's walk away from $$$, .....unless their conscience bothered them...?
Primum Non Nocere..
Thus, I'm with Multi-Billy / Eric on this one.
Of Course, Your mileage my vary...
I went traditional Stem cell workup and harvested enough cells for FOUR (4) Procedures, after Induction with Velcade and Dex.
I told them to put 'em on ice, .....and I'd be back if I wanted to do a Stem cell.
I have a Low risk multiple myeloma. ( Pos IgG Kappa Light chain-Pos CD 20 /CD 79-- t,11-14 carotype)
Between Mayo's, Berenson, and my Local Oncologist, ...QOL and newer meds (including "pipeline Drugs") won out. It was my decision. Informed Consent Occurred.
I collected, donated / harvested cells in the time frame of April 2013.
MAYO'S SMART Stratification came out shortly thereafter. It made since then, and it makes sense now.
The first phase of Aphoresis / transplant (Cytoxan) really tore me up...so I backed off going thru a transplant. Shi--y experience--literally. (for months)
Velcade had brought down my M spike--but I wished I'd never taken that drug for all the PN I suffer from, today.
I am stable, 0.1 G/DL "M Spike", and great Kappa/ Lambda levels and ratios. On 10 MG Revlimid maintenance.
I know neither Barlogie/ UAMS and Berenson / his affiliates.
Based soley on their literature--Berenson is much closer to a regimen of conservative, rational care and QOL based treatment.
Until they can: --Come up with a treatment giving multiple myeloma an 85 % "Cure" rate; --and develop a reliable test that can confirm a "cure" has indeed taken place--my QOL and use of newer meds is my ship.
I also note that in the Interim 2 years since Induction, that a number of Oncologists have "cooled" to Transplants / Up -front transplants. I suspect that the results seen just don't support the "Transplant first--figure out later" approach to Oncology practiced in 2005.
Note: They did not have these drugs in 2005--so I am critical of no one.
It is far less profitable to Rx drugs and monitor out-patient Serums, than it is to clinically treat in-patient transplant patients.
Why would MD's walk away from $$$, .....unless their conscience bothered them...?
Primum Non Nocere..
Thus, I'm with Multi-Billy / Eric on this one.
Of Course, Your mileage my vary...
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Rneb
Re: Dr. James Berenson
Rneb,
Take a look at this
https://myelomabeacon.org/forum/early-transplantation-better-than-late-t3506.html
Take a look at this
https://myelomabeacon.org/forum/early-transplantation-better-than-late-t3506.html
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Dr. James Berenson
dnalex:
...and I could point to a number of stories / articles / anecdotes / studies that differ in the other direction.
Just as Mayo's, Kumar, Berenson, Jakubowicz, et al have done.
I think that is precisely MultiBilly & Eric's point, in defending Berenson, et al in their suggestions that Upfront Transplants may not be the Std of Care anymore.
Two years ago, the Forums were all a twitter, with .."Does Revlimid cause secondary cancer(s)" ?
Study after study, was bandied about, until some wise Wag said--"gee, d'ya s'pose it's the Mephalan from the transplants that is responsible for the increase in secondary cancers--rather than the Revlimid " ? Basic Science stuff....
Haven't heard much since.
Sometimes studies are just not real helpful. Sometimes we have to think out of the box, and analyze what the studies (and the conclusions) DID NOT take into consideration.
When you read or quote Survivorship data--please remember : SEER data is atleast 3-5 years behind; The distinction between Absolute v Relative survival ; Age & Co-morbidity; . ...and when were many of these drugs approved and used in earnest ? ( Last 5 years--ie. see SEER data)
If you are Pro Transplant (Early & Often) .....then God bless you. Knock yourself out. Place that Port and suck in that Poison !
I will however, reserve my right to go steady & Slow,.... thank you.
Your mileage may vary.
Good luck.
...and I could point to a number of stories / articles / anecdotes / studies that differ in the other direction.
Just as Mayo's, Kumar, Berenson, Jakubowicz, et al have done.
I think that is precisely MultiBilly & Eric's point, in defending Berenson, et al in their suggestions that Upfront Transplants may not be the Std of Care anymore.
Two years ago, the Forums were all a twitter, with .."Does Revlimid cause secondary cancer(s)" ?
Study after study, was bandied about, until some wise Wag said--"gee, d'ya s'pose it's the Mephalan from the transplants that is responsible for the increase in secondary cancers--rather than the Revlimid " ? Basic Science stuff....
Haven't heard much since.
Sometimes studies are just not real helpful. Sometimes we have to think out of the box, and analyze what the studies (and the conclusions) DID NOT take into consideration.
When you read or quote Survivorship data--please remember : SEER data is atleast 3-5 years behind; The distinction between Absolute v Relative survival ; Age & Co-morbidity; . ...and when were many of these drugs approved and used in earnest ? ( Last 5 years--ie. see SEER data)
If you are Pro Transplant (Early & Often) .....then God bless you. Knock yourself out. Place that Port and suck in that Poison !
I will however, reserve my right to go steady & Slow,.... thank you.
Your mileage may vary.
Good luck.
-
Rneb
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