[rar]

A brief recap: In Aug 2013 I had a BMB that was pretty much normal with some small anomalies and was told that I would probably never need treatment for it. In Feb 2014 I had a BMB that said I had very high risk MDSRAEB2. I went on a clinical trial that reduced my blast count from 13 to 3 in 2 weeks. After 2 months blasts were 1%, but my CBC numbers were unchanged at very low to very critical. At this point I was told my only hope was a SCT. All 3 of my brothers were mismatches. All three of my sisters were 100% matches. The transplant team choose my 67 YO baby sister to be donor. I am 73.

The point of no return is when the trifusion port is inserted. This is done under semi anesthetic. The tip of the catheter is in a large vessel near my heart. The other end exits below my collarbone. Then I receive three doses of non myeloblative chemo. While I am doing this my donor is injecting filgrastim to increase her stem cells. Both of us are still feeling pretty good. I get a day of rest. Next day my donor does apheresis which separates stem cells. She produces 9 million, I only need 5 million so they give me all of them. I receive total body irradiation and then receive the transplant. The drugs they give me put me to sleep for the whole procedure and I spiked a fever and hallucinated. Normally I would be released from the hospital on day +1. Because of the fever I am released on day+4.

Some common side effects include nausea, lack of appetite, A baby eats and sleeps all the time because it is building the inside of its body. I am like a newborn, I need 150% of my normal caloric intake because I have to rebuild inside and remove the toxic chemicals I have been given. The thought of food makes me sick so I have problems getting enough to eat. I am now on a soft diet and am managing to force down some ice cream. Fortunately this is improving. I am down over 10 pounds at 153.

Extreme fatigue. This is where it is an effort to get out of bed. Muscles are hardly strong enough to move. This lasted only a couple of days.

Tiredness is different. With naps I am sleeping 10 to 14 hours a day. Slightly improving.

I am taking 21 different medications. With multiple doses of some of them I am taking 37 pills a day.

Transplant day known as rebirth day, or birthday 0. So maybe I will get two cakes every year. In addition to my donor's blood type including an XX chromosome, my donor promised me blond hair, her sense of humor, taste for wine, her winning smile, and her way with people. Transplant team says absolutely no alcohol for at least a year. 4 out of 5 isn't bad.

Engraphment should start in a week or two with production of all three blood cell types. My WBC is less than .1, platelets at 12. I have had 4 units of whole blood which has made me feel better. Today I will received platelets to try to stop some internal bleeding.

Overall it is a struggle. Barring any major reversals (GVSH disease, rejection, or relapse) the worst should be close to being over with gradual improvement over next 3 months. Mile stones include my own production of blood in a week of 2, a BMB at day 30 to see if I am producing my donor's blood, A BMB at day +80 with release to home, and a final BMB at +1 year to see if I am cured. Overall not a pleasant experience but well it if I am cured.

I got roped into clinical trial #5 today. It is phase 3 so it should be pretty safe. Maybe it will help someone


Thanks for all the support,

Ray