F. G., like you my numbers ever so slowly keep dropping down and yet I must "wait and watch." Here's why.
Even though I am with VA, I found out that if you're over 65 they (VA) can bill back Medicare for re-imbursement to keep their (VA) budget low and therefore Medicare can then dictate to VA what they can and cannot do and they must follow the Medicare standards. Medicare has no budget and gets new money every month from paychecks. But, as you know, Medicare is in trouble and trying to save money everywhere.
Eventually you and I will probably end up on Vidaza or Dacogen (not Revlimid it is mostly for 5q deletion) and then it gets real expensive real fast, tens of thousands per month. So you see, it's a numbers game and how they can get out this with the least cost to them, not us. Keep a close eye on Medicare and whatever insurance company you have and make sure they don't play games with your health for their own interests, not yours. It's our lives and we have to keep fighting for it.
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.