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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Dr. James Berenson

by coachhoke on Tue Jul 01, 2014 11:21 am

Very we'll said,Rneb. I absolutely agree with you.

Coach Hoke

coachhoke
Name: coachhoke
When were you/they diagnosed?: Apri 2012
Age at diagnosis: 71

Re: Dr. James Berenson

by dnalex on Tue Jul 01, 2014 11:35 am

Rneb,

I happen to be neither pro-transplant nor against it.

I AM very much in favor of proactiveness and making informed decisions based on ALL the available options, of which transplants may or may not be viable options, based on each individual's goals.

I simply pointed out the study as a means to show that transplants are very much still on the table as a means of treatment, and to disregard it is just as reckless as disregarding Dr. Berenson.

Be well!

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

by mikeb on Wed Jul 02, 2014 11:45 pm

Rneb said:

"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...."

Rneb, maybe I am reading what you wrote too literally, but a little clarification might be helpful. In "Revlimid And Secondary Cancers: Melphalan May Be The Culprit", I think there are two important points that your quote above does not take into account.

First, it is the interaction of melphalan and Revlimid that is associated with the increase in secondary primary cancers, not a main effect (in statistical terms) of melphalan alone. You need both chemo agents, not one or the other alone, in order for the increase to occur.

Second, the retrospective study cited by the Beacon article found that the increase only occurred when melphalan and Revilimid were administered simultaneously over a "long" period of time. With autologous stem cell transplants, there is a single large dose of melphalan. If Revlimid is also part of the therapy, it is given either before (induction phase) or after (consolidation phase and/or maintenance phase) the SCT.

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Dr. James Berenson

by Rneb on Thu Jul 03, 2014 8:27 pm

Mike;

Gee, ....the operative phrase in your analysis seems to be --simultaneous "long time" administration.

How does that occur ?

Mephalan maintenance ? Revlimid maintenance ? At the same time ?

Think a bit... So the issue has nothing to do with transplants ? Are you sure ? Your premise(s) sure seem to internally destruct...

If the study you quote is at all accurate and reliable---Why would someone then single out Revlimid as causative of "Secondary cancers' in that scenario...in several prior studies . ( as opposed to Mephalan, or Meph / Rev, or Meph /Rev / DMSO, etc ?)

Then again, I can always find a study to say pretty much what I want it to say / conclude...

Pretty thin science, is still pretty thin science, at the end of the day...is the point.

Berenson is merely carrying out the scientific method and challenging assumptions.
Exactly what we "Clods" hope our scientists are doing.

YES-- I am guilty of, and did actually say the following:

"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."

Good luck and have a happy 4th of july.

Rneb

Re: Dr. James Berenson

by mikeb on Thu Jul 03, 2014 11:12 pm

Rneb,

Here is the key quote from The Beacon article that I mentioned:
"...although treatment with Revlimid before or after high-dose melphalan – which is typically used as part of the stem cell transplant process – also appeared to increase the risk of developing secondary cancers, the increase was not statistically signifi­cant,­ and the increase in risk was not as much as occurred with Revlimid plus oral melphalan (Alkeran)."

Hopefully that clears things up for you.

I don't mean to disparage Dr. Berenson. I don't know enough about his work one way or the other to have an opinion. I do think that as better targeted therapies are developed, the use of SCTs to treat multiple myeloma will diminish and then disappear. That will probably take a decade or more, and some doctors will move in that direction faster than others. And, of course, individual patient situations will also influence treatment protocols, as already happens. Dr. Berenson is probably at the leading edge of the movement away from SCTs.

Whether the alternate approaches are "good enough" now to replace SCTs in all cases is a hotly debated open question, and there are clinical trials underway trying to answer that. In fact, I am a subject in one such trial.

Good luck to you too! And best wishes for a happy and safe 4th of July.

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Dr. James Berenson

by Stann on Fri Jul 04, 2014 4:44 pm

When I was diagnosed, the plan was to knock my numbers down to 10% of my original M-spike, then go with SCT.

After 1 and half years of not getting much improvement from just about everything, they sent me in for my transplant with my elevated numbers. M- spike went down to 25% of where it started after first SCT.

I did a second one which knocked that number by more than half again. I have stayed stable at this low level for 2.5 years.

The high dose melphalan (transplant) was the only thing that worked for me. I tried Revlimid, Velcade, Cytoxan (cyclophosphamide), and 2 rounds of VD-PACE. Probably something else too that I can't remember - ha.

I'd stay away from a doctor who is claiming that he won't recommend a stem cell transplant to anybody. Sounds like he's trying to make a name for himself more than treat patients as individuals.

Stann

Re: Dr. James Berenson

by hope22 on Fri Jul 04, 2014 6:37 pm

Hi Stann,

I was diagnosed in April 2014 and did RVD for two cycles, VD for 1 cycle, for only a modest decrease in M-spike 5 to 4. How much did your M-spike go down on the treatments you did for 1.5 yrs before your transplant? Are you taking any maintenance drugs now?

Thank you

hope22

Re: Dr. James Berenson

by Jeffrey Bradley on Mon Aug 11, 2014 8:14 pm

My wife, Arlene, was diagnosed with multiple myeloma in October 2009. Following surgery to remove the malignant tumor that had fractured two cervical vertebrae and the follow-up radiation treatment, she began treatment with Dr. Berenson in January of 2010.

Since that time, she lives a normal life with bi-weekly "maintenance" chemotherapy sessions. Her M-spike (now stabilized at 0.05) and overall numbers have consistently gotten better. His protocol works. He is doing excellent research and medicine. We have complete faith in him and his methodology.

Jeffrey Bradley

Re: Dr. James Berenson

by Rneb on Mon Aug 11, 2014 9:52 pm

I guess this falls under the Quality of life / Complications of STC--from the Beacon, that Berenson, et al factor into the transplant question. I had not seen this before.

Good luck.
* * * * * * *

In the current retrospective study, investigators from the University of Arkansas for Medical Sciences analyzed data from 278 myeloma patients who received an autologous (own) stem cell transplant on an in-patient basis at their institution between January 2000 and December 2009.

The average patient age was 63 years, and all patients received a mean of two autologous stem cell transplants.

Autologous stem cell transplantation involves collecting a patient’s own stem cells before high-dose chemotherapy. The stem cells are then reinfused into the patients to replace the healthy stem cells destroyed by chemotherapy.

Patients who had atrial fibrillation before their multiple myeloma diagnosis or before their first transplant were not included in the analysis.

Overall, 27 percent of the myeloma patients in the study developed atrial fibrillation following their transplant.

Rneb

Re: Dr. James Berenson

by Debbie W on Fri Sep 12, 2014 6:14 pm

I just was looking into Dr. Berenson and saw all the previous posts. My mom is 71 and very scared of the SCT. Dr Berenson's philosophy seems refreshing and he seems to have a big role in multiple myeloma. Is anyone seeing him currently who is older and high risk?

Thank You,
Debbie

Debbie W
Name: Debbie w
Who do you know with myeloma?: mom
When were you/they diagnosed?: june 2014
Age at diagnosis: 71

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