First things first. Thanks for all of the support!
My visit with Dr. Roy at Mayo in Jacksonville went as expected. Because I have the 1q22 duplication gene, the chances of me achieving a total remission with current treatment plans is completely unrealistic. I knew the results of my labs before I went there today and I make a habit of trying to be the most informed that I can be on this. I’m not a doctor…. but I do know myself better than anyone.
One of the things that has bothered me is my M-spike has remained consistent with my IgG levels. Basically speaking….. I’m a IgG Kappa Multiple Myeloma patient. My cancer is in my IgG’s and on the Kappa light chain. Since diagnosis, I’ve tracked both my M-spike and my IgG levels. The results are always the statistically the same. Here are today’s results:
M-spike 0.7 g/dL
IgG 1140 mg/dL
If you convert the M-spike from g/dL to mg/dL you get 700 mg/dL
So…. 700 mg/dL of my 1140 mg/dL are cancerous…. basically. That is roughly 61% and it’s been hovering at or around 61% for the past two years. My numbers are lower across the board because that’s what the high level Melphalan does. It knocks the good and bad cells down and I’ve spent the past 104 days recovering from that.
Here is what else Dr. Roy had to say:
Based on the data so far, he is in partial remission. This was discussed in detail with him. He has very good understanding. He was a little disappointed that he did not get a better response. We discussed maintenance therapy. He has intermediate risk disease because of 1 Q duplication. Typically we would recommend bortezomib based maintenance in this situation but given his neuropathy I do not recommend that. Additionally he has responded very well to Revlimid and I recommend maintenance with Revlimid starting with 10 mg for 21 days followed by 7 days off. Depending on his tolerance and blood counts the dose may be escalated to 15 mg.
What does it all mean? To me….. I WON THIS ROUND! I can’t beat this until CAR-T becomes available to me. That’s just the cold hard fact. I still won, though. The amount of cancer coursing through my veins is about half what it was before the stem cell transplant. I’m playing for a tie and I actually won this round. I’m going back on Revlimid and I have to take that until it stops working and then I’ll go at it again with the same attitude I always have. There’s too much life left for me to live to let Myeloma get in the way!