Hey there, just wanted to give everybody an update on my situation here. First of all let me say thanks to all of you for the good vibes, flowers, books, cards, candy, poems etc. you’ve sent. I can’t tell you how amazing it is to know you’re all out there and to feel your love.
Shortly after my last email I started taking a drug called interferon. It’s an injection that I give myself. It’s supposed to lower my high white blood cell count and possibly cause a remission (not a cure).
The good news is that it normalized my blood counts as fast as anybody in the clinic has ever seen it work. I went from 62k down to 12k (the high end of normal range) in 3 weeks. They thought they had made a mistake in the lab. The bad news is it made me feel like shit. At first it gave me a bad fever, chills and sore all over, but then it sort of stopped and i felt ok for about a week, but then I just started feeling lethargic all the time, no matter how much sleep i got, i was always sapped. Made it hard to function normally, let alone work. On week 4 my WBC counts dropped to 6k, right in the middle of normal range!…but so did did my RBC which explained my fatigue.
After I explained how lousy I’ve been feeling to the docs, they decided to reduce my dosage, as well as have me take it Monday, Wednesday, Friday instead of daily. I felt better after this, but my WBC counts went back up. So now the dose is the same as it was when i started, but still only 3 days a week. I feel better, i just hope it’s working.
The other big news is that the Bone Marrow Transplant (BMT) center at Duke Unversity has found 51 potential 6 out of 6 donor candidates. (see, I’m not as different as you thought) This is a big relief. Most people with CML never get a donor and it looks like I will. Of course those initial 51 have already been narrowed down by Duke specialists to 4 potentials. DNA testing is the next step, so we’ll see. Keep you fingers crossed for me. Many of you have asked how you can become donors and I would encourage you still to register. Not only because it’s a good thing to do, (and I don’t have a confirmed donor yet) but also because if my donor was someone I knew and was freinds with, well that would be pretty cool. So call your local red cross. A Bone Marrow Transplant is the only cure for CML and Marrow drives are starting up all across the country this month. If you go, make sure to demand a copy of your HLA typing and send a copy of it to me. This is key, otherwise it it takes 2 months for your info to get into the registry databank which won’t tell me who the donor is. So get a copy of your HLA typing.
I have been travelling around touring BMT centers across the country and talking to tons of specialists and finally seem to have reached a consensus on how and what my options for treatment are, the only uncertanties as of right now are if I will get a donor and when to do the transplant if one is found. When I do it, I will probably do it here in NC at Duke. The hardest part of that is being a UNC CHapel Hill alumni. How far will that rivalry go? Anyway, it’s a pretty simple procedure, the recovery is the long, hard part. I’ll send more details about that later.
In the meantime, please continue to send out all those good vibes. It’s been totally unreal having all of you responding so positively.