Latest update

Last Friday my doctor participated in a videoconference with members consisting of faculty and fellows from UW, physicians from the Hutch, and research folks from surrounding research facilities to discuss my case. From what I understand, these folks meet daily to discuss the cases of a few patients, typically 3 or 4. The discussion about my case mainly involved technical details around the transplant itself and how they wanted to proceed with it. My doctor is known to treat aggressively and was hoping to talk more about a treatment plan in the interim, so he didn't really get the answers he wanted. He'll be talking to the MDS specialist at SCCA today to get more info.

My blood counts are still low (I've been going in for blood work every few days) and continuing to drop slightly, so my doctor wants to start treament soon regardless of whether my sister (or parents) are a match for donor typing. We may start as early as Thursday on the drugs AMG531 and Azacytidine. The first drug (AMG531) is in clinical trial but has been in the works for about 7 years. Its purpose is to increase platelet production and apparently has very little side effects and good chance of success. The other drug, Azacytidine, is a chemotherapy drug, meaning it should kill off abnormal blood cells while helping to increase the production of normal blood cells across the board (white cells, red cells, and platelets). It also has few side effects, but can cause severe nausea and vomiting.

Since my white blood counts are also low, my doctor has repeatedly warned me to stay away from crowds (e.g. rock concerts, festivals) since I run the risk of getting an infection. Since the chemotherapy drug may cause my counts to go down before they go up, the risk of infection may be even higher after Thursday. He's recommended working from home if I can. Obviously I prefer working in the office for the social benefits and to help keep a semblance of normalcy, but I may need to work from home for a little bit next week.

The good news is that I'm in great spirits, mainly because Johanna has been so supportive and because I had my friends and family in town over the last week and we all had a great time doing lots of fun stuff. The weather is nice (it really does help lift one's spirits) and I finally seem to be over this cold I've had for the last 4 weeks which was causing my ear to be plugged up this whole time. Having a plugged ear is really annoying, and being able to fully hear again is such a nice thing :)

So the summary is: we may start treatment as soon as Thursday and I should be able to function normally while on the treatment, but I may want to work from home to avoid infections. I have another meeting with the MDS specialist at SCCA next Tuesday so I'm hoping to find out about whether my sister or parents are a match by then.

More info on the treatments:

AMG531:
http://www.medicalnewstoday.com/articles/34884.php

Azacytidine:
http://www.webmd.com/drugs/drug-90380-Azacitidine+SubQ.aspx?drugid=90380&drugname=Azacitidine+SubQ