[Wayne O'Shana]

Hi June:

You have done a perfect job as advocate for your dad. I don't think anyone could have done better at searching for information and asking the right questions.

My first (third rate) doc told me I would die after two years of tx due to the build up of antibodies that would cause alloimunization. He also told me "Don't worry, the death is painless." There are zillions of articles in the literature about leukocyte reduction (filteration) and irradiation of blood before storage to prevent alloimunization in chronic tx patients. Bob Carroll was one of our members on the old list who lived for 15-years after dx (57 yo) with treated blood for every tx. Just make sure the doc knows about treated blood for your dad. I'm sure you will be willing to tell him about it if it turns out to be a mystery.

I couldn't stand the attitude of my second (arrogant) doc. Why didn't he start tx before I crashed with a Hgb of 5.0? Anemia does bad stuff to the body, and I hope your dad can get two units of treated PRBC when his Hgb drops below 10.0. Letting the Hgb drop to 6.6 is unacceptable for a middle-aged man and just about as bad for the youngsters.

Epogen and Procrit are trade names for "recombinate human erythropoieten" (EPO for short). Neupogen is the trade name for "granulocyte cell stimulating factor" or G-CSF (NUP for short). These two are synergistic in that EPO can be injected for months with about as much benefit as distilled water, but when NUP is added it can kick-start the EPO into action in very short order. That was my experience.

My EPO was also high, at 800, so I thought getting shots of EPO would be a waste of time but I was willing to give it a try. I was with my third (incompetent) doc now, with a portacath and two bags of treated PRBC monthly. When he started the EPO I mentioned the need for NUP and was like, you know, totaly ignored. It got to be a routine with my bringing up the subject every couple of months and getting excuses like "Medicare won't pay for it. The cost benefit ratio doesn't warrent such an added expense. There is nothing in the literature to support the use of NUP." When he gave that last excuse I was ready to punch his lights out but being a kind hearted guy I decided to print out some ASH conference reports on the subject instead. The next month I shoved three conference reports under his nose and that finally sparked his agreement to start the NUP.

I might have had two more tx before the combination worked. When the good numbers showed up he just beamed "I have never seen such a turn-around and I am so happy for you." I had some very dark thoughts about why he had never seen such a turn-around before. I was still trying to be a kind hearted guy so I kept my mouth shut. My Hgb has stayed in the fourteen range for several years. My counts aren't perfect but, not to worry, the out-of-range numbers are close enough for me.

My fourth doc seems to be OK...finally.

Have you compared the side effects of Vidaza and Dacogen? Dacogen is given at a lower dose over a longer period of time, but it is not as convenient as Vidaza which is given in an outpatient setting. You might ask the doc if there has been any thought of a combination of one of these drugs with low dose Revlimid. Thalidomide, and its analog Revlimid, has antiangiogenic properties. Hagop Kantjerian is one of the authors of a paper from M.D. Anderson about their study "Antiangiogenic Therapy in Myelodyspalstic Syndrome." When you pop up with something like this it lets them know that you are doing your homework. I Google stuff like this for hours, you know, just in case.

My message with this long-winded post: Do your homework. Google everything you can think of. Don't worry about hurting the feelings of some dork who isn't up to the job. Don't ever give up.