[bailie]

Today (August 15th) it has been one year since my stem cell transplant. It has been an interesting and quality year. I have been very fortunate.

To recap, I was diagnosed by low platelets (48), low RBCs (3,75) and dropping WBCs (4.7) in November of 2013. I had two BMBs within two weeks which confirmed MDS (RAEB-2) and blasts between 10 and 19 percent. I was immediately prescribed Vidaza (7 days on with a 21 day break). I reacted very well to the Vidaza and blood counts all moved in a positive direction after the second round. Revlimid was added to the Vidaza for months 6, 7 and 8.

I went to the hospital on August 8th to get my 3-lumen Neostar put in place. On August 10th I started the Chemo Fludarabine. I felt fine the first two days and walking 5 miles a day at the hospital. The third day the chemo hit me hard and I could not walk a half mile. Fourth day was worse. Then I got the stem cells the night of August 14 at about !0:30 and into the morning of August 15th. As predicted by everyone, the first two weeks were difficult. I had no mouth sores ever. I did lose my taste for about a month and my sensitivity of smell increased dramatically.

My first year after transplant has been relatively uneventful. I gradually regained strength with only about two weeks of very mild skin GVHD. At about Day +100 I developed a dry cough which turned out to be one of the worst of fungal infections in my lungs. The infection was in an enclosed capsule that was removed by surgery. Doctors thought it was a complete success and it hasn't bothered me since. There was about an eight week recoup after surgery of just taking it easy. Since that time I have gained strength and endurance weekly. At about Day +230 I was diagnosed with a relapse which was a very rare Philadelphia+ AML with 33 percent blasts. That was a real "attention getter". I was immediately put on Vidaza and Sprycel (which would combat the Philadelphia chromosome). I reacted well almost immediately and after two cycles there was almost no sign of any problems. The doctors are "winging it" now because this is so rare and very little research. I am feeling almost normal with no GVHD and golfing 18 holes weekly. Last month I built a 135 foot long cedar fence along with several other small projects. I do get tired in the evenings and often go to bed before 8:00 p.m. and get up about 6:30 a.m. An interesting side note is that I relapsed with a different disease. The previous genetic markers/mutations (KRAS,SF3B1 and IKZF1) are gone and new ones (the Philadelphia, 9;22) appeared.



Next Monday I will have my 14th BMB. We check very closely to my situation. I will most likely continue on Vidaza and Sprycel for a while. The questions we have at this time are, "do we keep on Vidaza and Sprycel the rest of my life" or "do we back off to see what happens with the remission"? It is a tough decision because of almost zero research for my diagnosis. My doctors have been talking to others around the country for more information.

I would be happy to live several years with how I feel, but the odds are very slim. We know the Vidaza doesn't work forever, so we'll see. All in all it has been a very good year and I have no regrets about having had the stem cell transplant.