Day 279

The regular biweekly clinic visit went well today. My blood counts were good with my WBC being as high as it’s been in months.

WBC – 4.3, up from 3.7
Hgb – 11.6, down from 11.7 and still below normal of 13
Plt – 279, down from 280 and at a good level
AST-SGOT – 38, up from 36 (below 42 is normal)
ALT-SGPT – 44, up from 37 (below 40 is normal)

The doctor said one of the liver enzymes being slightly elevated is not something he is terribly concerned about right now. Also, my magnesium level was good after having been a week without taking any supplemental magnesium. They were happy enough with my levels, that they’ve cut back my Cellcept (which is my remaining anti-rejection med) from 4 a day to 3.

As for my questions I wanted to ask (some I mentioned in my blog entry from Day 270), I got the following:

• The doctor is satisfied with the amount of GvHD I’ve had. However, he believes it is likely I will have more down the road, and while he really can’t predict what or when, he said he’d rather it would be a bit more liver problems than skin problems because the skin problems tend to be tougher to treat.
• I can start to modify my dietary restrictions in that I can start eating fresh fruits and vegetables, but he is still wary of restaurant offerings, because one can’t tell how long the stuff has been sitting out and who’s been breathing on it, etc. I get the sense he’s just generally uncomfortable about it, even for himself. But I can have fruits and vegetables at home if they are cleaned properly. The human contact restrictions I need to keep observing until I am off of the immune suppressants. This is hard partly because it’s just hard for me, but also, since I haven’t been getting sick at all, it’s tempting to relax too much about avoiding crowds and hugging people.
• I do have to be careful about the sun because of both meds and GvHD. I think I can do that.
• As for my odds of cure, he didn’t really get specific about numbers even though he indicated that my odds now are better than they were. When I asked about the likelihood of the leukemia making a comeback, seeing how there has been no evidence of it since August, he is again cautious and says he likes to see 2 years of chimerism studies showing no residual disease in the marrow and blood before he has a lot of confidence about the leukemia being completely gone.
• Finally, I asked him about the new drug called Revlimid that has been in the news lately as being so effective in treating Myelodysplastic Syndromes (the disease I had) that the doctors studying it are somewhat stunned. He said that with the form of the disease that I had (Refractory Anemia with Excess Blasts or RAEB), it is not likely that it would have been effective for me because it seems to be much more effective against the milder forms of MDS than the more severe ones like RAEB.
  

So while I hear the doctor when he says he expects me to have more GvHD and believe him, I really am just enjoying that I currently feel pretty good and that I feel like I’m improving, even if slowly. If I get more GvHD, I deal with that then.

Love,
Justin