The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

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

Re: Trial or standard therapy for high-risk smoldering?

by gardengirl on Fri Feb 14, 2014 3:59 pm

Multibilly,
Funny you should post again...I just spent hours reading the 7 page thread from when you first posted!!! Quite entertaining; but seriously it has helped me tremendously! As of today, I feel that if I can get into the NIH trial, I will do that. If not, then I will start induction therapy, harvest the stem cells, and then wait on the SCT. It's difficult enough for me to pick paint colors, let alone make a life-altering decision!!! But I will keep reading and educating myself, which I think is the most important thing for all of us!

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Trial or standard therapy for high-risk smoldering?

by Multibilly on Fri Feb 14, 2014 5:29 pm

So, to be clear, by "waiting on the SCT", do you mean you would treat the SCT as a salvage therapy option if you should relapse after the VRd induction therapy?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Trial or standard therapy for high-risk smoldering?

by gardengirl on Sat Feb 15, 2014 11:46 am

Yes, that's what I'm thinking...delayed SCT...unless there are statistics that show that early intervention with SCT is superior for OS. I will continue to research.

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Trial or standard therapy for high-risk smoldering?

by Multibilly on Sat Feb 15, 2014 11:50 am

Wishing you all the best on getting into the NIH trial Gardengirl.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Trial or standard therapy for high-risk smoldering?

by Alma3000 on Wed Feb 26, 2014 3:46 pm

Forgive me for being quite ignorant. I was just diagnosed with multiple myeloma. My doctor has been tracking me for 4 or 5 years with MGUS. My last bone marrow was over 10% myeloma cells. I am going to the University of Penn next friday for a second opinion. I don't have any other symptoms other than the high bone marrow count. I am in stage 3 kidney failure, but the doctor is pretty sure that it is from my diabetes.

Here is my question? What is the criteria for "high risk" smoldering myeloma?

Thanks for any answers.

Alma3000

Re: Trial or standard therapy for high-risk smoldering?

by gardengirl on Wed Feb 26, 2014 4:36 pm

Hi there! At first I didn't think I was high risk smoldering myeloma because I was under the impression I had to have ALL of the criteria:

1) M protein > 3g/dL,
2) > 10% plasma-cell bone marrow infiltration,
3) elevated level of abnormal plasma cells in the bone marrow,
4) an abnormal free light chain ratio (FLC ratio),
5) chromosomal abnormalities, and
6) lower than normal levels of uninvolved immunoglobulins.

But the myeloma specialist has categorized me as high risk for progression because I have MOST of these criteria (4/6) and my numbers show the myeloma is "evolving".

Hope this helps! Best wishes to you at Penn; I hear they are excellent!

P.S. With regards to my original post about clinical trials, NIH has closed theirs for the time being due to Dr. Landgren's move to NY. :(

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Previous

Return to Treatments & Side Effects