Ok I am trying to get a referral to either Mayo or moffit, have spoken w both, I have to switch back to Medicare and either will take me, however, that will take some time, I talked w the patient navigator and I may be able to switch under ‘life changing event’ that’s what I’m looking into, thanks.

Just because I progressed rapidly, doesn't meant that you will progress rapidly. You seem to be focused on gain of 1q, but that may not be the most important factor. Early on I was focused on my immunoglobulin, specifically IgG, and light chains. However, the most important number is m-spike or paraprotein. Remember, myeloma is an over proliferation of plasma, and plasma gives off this useless protein, called either m-spike or paraprotein. (Different name for same thing.). If it is above 3, you either have MM or you are close to it. But, it is not a bright line, and less than 3 doesn't mean that you are fine. (I was 2.8 when I got to MDA, but she said, don't think that means you are safe.)

You said that I mentioned the "fallacies" of Revlimid. I don't think that is the case. It is an amazing drug. What I found odd is that you would be given this alone without steroids or a proteasome inhibitor, even as a SM patient. Also, the 25 mg dose is given for 21 days with 7 days rest. You didn't mention that you would be given this in that cycle, and I would be concerned if it was an every day medication.

I hope that this is of help. I do believe that there are better resources than MyMyelomaTeam. In addition to Healthree, I recommend the International Myeloma Foundation's smart patients.
https://www.smartpatients.com/conversations?fil.... You will find many high quality conversations from people who are amazingly well educated on the subject and have a great deal of experience.

Marcia

Conversations

https://www.smartpatients.com/conversations?filter=all

Hi Dan, I'm glad you are getting a second opinion. I have read that regular Medicare is better than some of the advantage plans? I'm going to be researching which one is best for me personally.

Dan is your onc a MM specialist? It doesn’t hurt to get a second opinion. You have to do what makes you feel more comfortable with your decision.

Dan, one more thing. I see that your plasma load was 20%. Given that bone marrow is inconsistent, it is possible that another sample might be different. However, assuming that 20% is a good number, and roughly correlates to your m-spike, you are probably pretty healthy. I was at 50% when I had my first biopsy and was diagnosed with HRSM. Don't let the FISH result scare you.