[dee777]

Center curing multiple myeloma???

by dee777 on Fri Mar 01, 2013 8:39 pm

Talked to this guy that told me he went to UMAS in 2007. He had a transplant done there, in remission. He lives in VA like me. Told me he is not in remission but cured. When he came back he hasn't done any blood draws or anything. Said doesn't need to, he is cured. Said they are curing people out there. Any one else cured there?

[Multibilly]

Re: Center curing multiple myeloma???

by Multibilly on Fri Mar 01, 2013 8:45 pm

Do you mean UAMS, which is a well known multiple myeloma treatment center in Arkansas, and has a reputation for very aggressive treatment protocols?

[dee777]

Re: Center curing multiple myeloma???

by dee777 on Fri Mar 01, 2013 9:43 pm

Really? Well, I had trouble believing he was cured with out blood work to even back him up. I asked him how he knew he was cured, and he said they told him. So he came home and never followed up on any thing. I don't understand why they wouldn't have had to do follow up with a doctor when he got back. I am just telling what he told me.

[dee777]

Re: Center curing multiple myeloma???

by dee777 on Fri Mar 01, 2013 9:44 pm

Course now my family want me to go there and get "cured" too.

[Multibilly]

Re: Center curing multiple myeloma???

by Multibilly on Fri Mar 01, 2013 11:04 pm

You can find a lot of info and opinions on this forum and the web about UAMS. I will point you to this thread and leave it to others to comment on being cured and/or their experiences with UAMS. You can also google on "UAMS Myeloma" and "UAMS Total Therapy" (aka TT) and find lots of info.

https://myelomabeacon.org/forum/report-on-myeloma-trials-at-uams-t1350.html?hilit=UAMS

[dee777]

Re: Center curing multiple myeloma???

by dee777 on Sat Mar 02, 2013 8:43 am

Thank you. I would need a lot more proof to say they are curing people or cured this man I talked to. He is young, I will wait to see if he dies of natural causes at age 80.
I have no desire to go there.

[Dr. Peter Voorhees]

Re: Center curing multiple myeloma???

by Dr. Peter Voorhees on Sat Mar 02, 2013 10:11 am

Dear De777,

I would suggest that this individual reach out to the UAMS crew. They would want him to follow-up on his condition, regardless of his current disease status label (cure vs. functional cure vs. long-standing complete remission).

Thanks!

Pete

[JoeyNutz]

Re: Recent Corrections - Center curing multiple myeloma???

by JoeyNutz on Tue Mar 05, 2013 11:15 pm

In Nick's myeloma blog, he has alerted the reader to a dissapointing aspect of long-term data from the total therapy protocols at UAMS. Until very recently, the data suggested that for low-risk patients remaining in CR , the survival curve for the latest protocol (TT3) appeared to be essentially flat at about 4 years. This indicated that if you make it to that point, there is a good probablity of cure -- long lasting remission -- on the order of 86% or so

BUT the recent incorporation of long-term data has changed this view. It now shows that this curve is not flat, that the 3-5 year plateau was an artifact, and low-risk patients continue to relapse many, many years out - at 8, 9, years, with no plateau in sight. Now through statistical mumbo jumbo, the guesstimate was still something like 60% possible cure - but that was unclear to me. And bizarrely, high-risk patients DID apear to plateau.

So as one consequence of this, a conservative UAMS approach will probably demand many, many years of significant maintenace -- even after the brutal induction protocol.

Now on a different note, I just had a consult with a multiple myeloma specialist in LA, who once did many transplants but no more. The current survival statistics, looking BACK from today, are now a median of 15 years. I don't know how selective that data is -- but it is encouraging. And as he put it, for a newly diagnosed patient today looking FORWARD, that median will undoubtedly be much, much, longer.

So we are all moving in the right direction -- but I increasingly feel that you have to view this as a marathon.

[HoratioKay]

Re: Center curing multiple myeloma???

by HoratioKay on Sat Mar 09, 2013 12:46 am

I had tandem autologous stem cell transplants in 2008 at UAMS. I remain in remission five years later and am doing very well. I highly recommend UAMS. Another benefit of UAMS is that patients may return to their hotel or apartment every night instead of sleeping in a hospital for a month.

[terryl1]

Re: Center curing multiple myeloma???

by terryl1 on Sat Mar 09, 2013 7:40 am

Hi JoeyNutz, love your handle! I assume you are talking about Dr. Berenson at the end of your post. Can you fill us in on your consultation and his approach? Thanks.