Day 270

I don’t know how my last entry wound up as Day 244, but I believe it should have been 251. This one is a delayed report of my last clinic visit which was last Thursday which would have been day 265. The news this time is that we’ve made what I consider to be a positive move on decreasing meds. My blood counts have generally improved even without adjusting meds (which may be affecting some of them), including my liver enzymes dropping into the normal zone.

WBC – 3.7, up from 3.5
Hgb – 11.7, up from 11.6 and still below normal of 13
Plt – 280, down from 281 and at a good level
AST-SGOT – 36, down from 37 (below 42 is normal)
ALT-SGPT – 37, down from 45 ( below 40 is normal)

As a result of my blood counts (especially the liver enzymes) being good and other symptoms like stomach cramping improving, the doctor cut me back on my immune suppressants. I was taking one pill a day of Prograf (tacrolimus), a drug I’ve been on since I started chemotherapy just prior to my transplant. He said to stop taking that drug, which leaves me on 4 pills a day of Cellcept, the other immune suppressant which I have been on since liver problems first arose in early February. He said that if I do OK over the next 2 weeks, he will then start weaning me off Cellcept as well. Being off Prograf means that this Thursday, I can also stop taking the magnesium supplement (4 pills a day).

This reduction of immune suppressant drugs is what I’ve been waiting for, and I consider it a very positive step. However, I have learned not to get my expectations too high, because there can be setbacks and new kinds of GvHD even years down the road.

The doctor said I am doing very well and commented that my sister (who donated the stem cells for the transplant) and I must be very close genetically because of how well things seem to be going 9 months after the transplant.

The questions I hope I can remember to ask him at my next appointment include things like the following:

• Is he happy with the amount of GvHD I’ve had (remember that he has said all along that while he doesn’t want to see a lot of GvHD, he wants to see some because it increases the likelihood of a good amount of graft vs. leukemia)?
• When can I start to modify my dietary and human contact restrictions?
• How much do I have to worry about exposure to the sun (we’re planning a beach vacation in early June)?
• Is he ready yet to adjust the odds of a successful cure up from 50 – 60 percent?

Since I’ve wanted to become more physically active, I’ve started doing more things like tennis, bicycling, walking, volleyball, and yard work, and with the weather getting warmer, I am also starting to sweat a lot more when doing these more strenuous activities. This is causing a problem with the dressing covering my Hickman catheter (central line) entry point into my chest in that the dressing starts to come off when I sweat. Since I haven’t used the catheter for putting anything into my blood since I stopped the saline infusions in early February, I asked my PA to ask the doctor if we can have the catheter removed. She just called back a few minutes ago and said that she got the green light for that and would try to set me up to have it removed on Friday. It will be so nice to get it out because not only do the tubes bounce around and get pulled when I sleep or play tennis and volleyball, I have to be careful to keep it dry when I shower, change the dressing 3 times a week, flush the lines with heparin every day, etc. Maybe not having tubes dangle out of a hole in my chest will also be one more thing to help me feel a bit more normal.

Love,
Justin