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!
Forums
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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?
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?
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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?
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.
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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?
Wishing you all the best on getting into the NIH trial Gardengirl.
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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?
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.
Here is my question? What is the criteria for "high risk" smoldering myeloma?
Thanks for any answers.
Re: Trial or standard therapy for high-risk smoldering?
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.
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.
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
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