[Ken W Dick]

Re: Center curing multiple myeloma???

by Ken W Dick on Tue Jun 25, 2013 1:15 pm

I was diagnosed in August of 2010. I had 8 or 9 lessions in my right hip, that required hip replacement, and one in my shoulder. I did 6 months of Velcade/Revlimid etc. I was in TOTAL remission after 6 weeks of treatment. I did auto SCT in May of 2011. I have been in total remission ever since. I take no maintanence drugs. I get bloodwork every 6 months but that's it. I will never say I am "cured". My SCT doc told me he should never see me again, but stopped short of saying I am cured! I have health issues from the treatment and getting older(56) !! But nothing from multiple myeloma........ I am an exception to the rule here or should I expect this multiple myeloma to come back some day? I am reading so much here and other places about people relapsing. It does worry me some. I am wondering if I am special or just lucky or should I realistically assume I will relapse someday ? Some days I think I also think I am " cured "! Other times I am wondering if I am fooling myself thinking I am done with multiple myeloma.....

[dnalex]

Re: Center curing multiple myeloma???

by dnalex on Tue Jun 25, 2013 2:18 pm

I think cure is the hope, and the goal, but at present, I don't think anyone can claim that they have a cure just yet.

[LarryD]

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

by LarryD on Thu Jun 27, 2013 1:37 am

JoeyNutz wrote:
> 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. ... 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.

JoeyNutz,

I can't find this information after doing a search at Nick's blog (http://nvdmyeloma.blogspot.com/). Can you give the date of his discussion? Better yet, can you or Nick cite a publication where this result is reported?

--Larry

[Mark]

Re: Center curing multiple myeloma???

by Mark on Thu Jun 27, 2013 9:08 am

Hi Larry D,

The post that was referred to was the March 1, 2013 post. It is an excellent post. I do not believe an analysis of the updated Total Therapy 3 data has been presented by UAMS yet. Nick does an excellent job of explaining it. Nick's main point of the post is that there is no flattening of the Progression Free Survival curve at a little over 8 years.

Mark