[lynej]

Questions about myeloma treatment centers

by lynej on Fri Jan 25, 2013 4:19 pm

This is my first post.

I need some guidance on the most recent treatments for smoldering myeloma.
I was diagnosed 4 years ago and my plasma cells have slowly increased.

I have several questions and I am quite willing to listen to all information., as I
am searching for the truth. My brother-in-law died 2 years ago with M. Myeloma.

1. Why are people so competitive regarding the treatment centers and why
is Suzie so critical of UAMS? Did she go to UAMS for treatment?

2.. Did the doctor who wrote criticisms/questions regarding UAMS Total Therapy 2/3
reports work at UAMS?

3. Why is Mayo using the same drugs that they used 6 yrs. ago if new novel drugs are
successful?

4. How does a new patient discern truth from marketing ploys?

Thanks for any and all comments. I feel lost.

Best regards,

Lynej

[Arizonan]

Re: Questions about myeloma treatment centers

by Arizonan on Fri Jan 25, 2013 8:05 pm

There are more aggressive approaches, and less aggressive approaches. You should take the time to get recommendations from a couple different treatment centers, and then decide what approach best fits you. It is possible that, for you, the best treatment is no treatment for now.

When I was diagnosed, I was much further along and had to get immediate treatment. I chose UAMS and was very happy with my choice. They are controversial, though, as they advocate an aggressive approach to patients with myeloma. I don't know what they will recommend for smoldering myeloma.

While some patients are critical of aggressive treatments, most patients greatly appreciate a wide variety of treatment approaches. More options is better than less!

Good luck

David

[TerryH]

Re: Questions about myeloma treatment centers

by TerryH on Sat Jan 26, 2013 4:47 pm

Hi Lynej,

Arizonan's reply is a very good one. I'll just try to add a few answers to your specific questions:

1. Why are people so competitive regarding the treatment centers and why
is Suzie so critical of UAMS? Did she go to UAMS for treatment?

Not everyone is "competitive" about their treatment centers. Some are, some aren't. If it seems like a lot of people are, it may be just because the people who are more competitive about the issue are also the most likely to post their thoughts.

As far as I know, suzierose was never treated at UAMS. UAMS typically uses one or two stem cell transplants as part of their treatment for active myeloma, and suzierose (and others) do not believe stem cell transplants should be used routinely to treat myeloma patients.

2.. Did the doctor who wrote criticisms/questions regarding UAMS Total Therapy 2/3
reports work at UAMS?

Yes, he did work at one time at UAMS.

3. Why is Mayo using the same drugs that they used 6 yrs. ago if new novel drugs are
successful?

Why do you believe Mayo is still using the same drugs that they used six years ago, and, even if they are, why do you feel that's a bad thing? The only new myeloma treatment that's been approved by the FDA in the past six years is Kyprolis, and it's in the same class of drugs as Velcade. Also, Kyprolis's approval by the FDA is for the treatment of myeloma in patients who have had at least two prior therapies.

4. How does a new patient discern truth from marketing ploys?

What kind of "marketing ploys" do you mean? I guess the best way patients can figure out what is best from them is to read as much as possible and discuss the options with as many knowledgeable people as possible. You should look for hard data as much as possible, not just "hand waving", and listen and read carefully and critically.

I hope this is helpful. Let us know if you have any further questions.

[Mark]

Re: Questions about myeloma treatment centers

by Mark on Sat Jan 26, 2013 5:22 pm

Hi LyneJ,

Hopefully you will never progress and need any therapy.

TerryH and Arizonian both gave you great answers. The problem we have as myeloma patients is that no "style" of therapy has shown a definitive overall survival advantage or quality of life advantage over another. This short 2 paragraphs including a quote from Dr. Rajkumar of Mayo sums it up perfectly IMO:

"Recent years have witnessed a flood of clinical trials incorporating the novel agents thalidomide, bortezomib, and lenalidomide into myeloma treatment. Yet despite the 20 new combination regimens that have been evaluated in the past 10 years, none has emerged as a clear frontrunner in terms of improving overall survival or quality of life, according to S. Vincent Rajkumar, MD, of Mayo Clinic.

As a result, “Clinicians are forced to make a choice not based on data, but based on opinion—and opinions vary,” said Dr. Rajkumar. The selection of initial therapy heretofore has been guided by whether a patient is eligible for autologous hematopoietic stem cell transplantation (ASCT) based on host factors such as age, organ function, and performance status. Thereafter, therapy selection was refi ned in accord with the aggressiveness of disease based on cytogenetic and gene-expression analysis."

http://chicago2012.asco.org/ASCODailyNews/myelomacontroversies.aspx

With respect to question #4, I would look at the Financial Disclosure Statement of the Doctor that is giving their opinion about the data they are presenting. Never forget that cancer therapy is big business. Many of the Doctors recieve money from "Big Pharma". That could influence their interpretation of data. It is also in an individual treatment centers financial interest to get as many patients to their facility as possible. Just another thing that makes it difficult to be a myeloma patient!

Mark

[Eric Hofacket]

Re: Questions about myeloma treatment centers

by Eric Hofacket on Tue Jan 29, 2013 3:40 am

I went to a MMRF symposium and UCF last year that had representatives from Mayo Clinic, UCSF, City of Hope and another well-known myeloma treatment center that escapes me right now. I learned and the doctors all acknowledged that there is a can be a wide disparity between doctors and cancer centers in the treatment of myeloma. Even from doctor to doctor within a cancer center. The “standard of care” is not as mature and established for myeloma as it is for many other cancers. I first learned of the UAMS Total Therapy 2/3 at this symposium just after I had gone through my own Velcade/Dex induction with Kaiser followed by a SCT at City of Hope, pretty typical for many with myeloma. I have achieved complete remission for over a year now. I was bit stunned to hear how intense the UAMS program was and what kind of commitment it would take to go through that. I know the treatment took its toll on me, I lost 50lbs from diagnosis to when I completed the SCT and had a bad case of peripheral neuropathy that has since nearly resolved itself. My feeling is to get enough treatment as necessary to treat the disease and get into complete remission if possible and no more, it does take a toll on the body. I have read that SCT has more than insignificant risk of heart damage, secondary cancers, pulmonary damage and other potential complications. There was a trial open to me do a tandem SCT like UAMS does and I am glad I did not do it. I do not believe a second SCT may be the best thing to do if a complete remission was achieved after the first. I think the risk versus benefit need to be evaluated on an individual basis before proceeding with a SCT or any treatment continuously. After losing 50lbs I do not know how a second SCT would have gone just a few months after the first and I would have had to use up all my sick leave and gone into an unpaid status at work, I am not retired. What I do not know yet, and what UAMS is collecting data on, and what I understand there are independent trials going on for is to determine if even if a complete remission is achieved after the receiving the kind of treatment I received does continuing on with another SCT and more chemo and radiation lead to longer progression free survival and/or longer survival overall? Unless that answer is clear for me I will think twice about continuing intensive treatment once in complete remission.

[Nancy Shamanna]

Re: Questions about myeloma treatment centers

by Nancy Shamanna on Tue Jan 29, 2013 9:31 am

Hi Eric, I had not known much about myeloma until after my treatments actually. I feel very fortunate that I am under the care of very good physicians! When I read of the very intensive sorts of treatments done for some patients, in my heart i felt that would not have worked for me. The one transplant was enough, I felt. I am not sure how many women in their late fifties would undergo such intensive treatment actually...but it was not presented to me as a choice. I have had some really good QOL so far considering what myeloma can do, and hope to continue on like that too!