The results of my blood test today were that the white count components were still going up, but some of the red cell components were going down. Unfortunately even though I had my blood test four hours before we met, most of the numbers weren't in the system so Dr Sharman had to call the lab for them and I don't really have them. Unfortunately someone higher up than Dr Sharman rescheduled a meeting he needed to be at right on top of our time, so he told Susie the plan and she gave me his notes. He left me a message tonight, and repeated what Susie had said - even though some red counts were lower, he saw encouraging signs so he's "moderately optimistic" my counts will start to come back soon.
The plan is that I'll get another transfusion (3 units) and another Procrit shot on Sunday in the Cancer Center at Stanford, and another blood test, and if the counts are good enough I can go back on the drug. If not, we'll continue to try and get my red count up and I'll stay off the drug longer. But it appears both Dr Advani and Dr Levy agreed with this plan - hopefully the drug was at least slowing down the progression, if not fully stopping it - given me longer to find a matched, unrelated donor.
Dr Sharman had asked me if I was "up" for all the tranfusions, etc. - as I've mentioned I find that better than the hospital ('cause you sleep at home even if it's a long day), so I'd have no problems. I think under any circumstances until my red counts get higher, I won't have a lot of energy, so I'd like to see it happen even if they decide to take me off the drug for some other reason (like they're convinced it's not working - I don't check all my lymph nodes as it would drive me mad, but some nodes in my neck that were pretty consistent during the 4 weeks on the trial have seemed to grow noticeably in the last week I've been off of them. Hopefully I've got some red-cell generating stem cells left in my bone marrow, so some of the numbers will be helped by the Procrit by late next week hopefully (as it takes a couple of weeks from the first shot to take effect).
I tried to get the transfusion on Saturday, so I might feel better on Sunday, but they were already booked up at the Infusion Center for Saturday. They said I need to come in at 8:30 so they could finish, but I don't think it'll really take that long as it usually faster than 2 hours per unit. I had asked for after 9, but realized this is the morning we "fall back", so it's more like 9:30 to me anyway.
After my appt, we went to Cathy's last appointment with her Thyroid doctor who treated her 18 years ago when the thyroid cancer was discovered just after we found out she was pregnant with Alison. The first endocrinologist we saw worried the hell out of us, but realizing he hadn't treated many cases in his career, we asked for a referral to Stanford and he recommend Dr McDougall. Dr McDougall is everyone's favorite doctor - he takes his time with patients, talks with a Scottish accent (as he's from Scotland) and runs on time. He made us feel a lot better, saying he treated hundreds of cases like Cathy's every year, and they're be no trouble having her baby, and a few months later doing a "radio-active" cocktail to get anything that might've been flowing around. Now she just takes pills to keep the thyroid hormones at a good level, which seems to do the trick. She's been fine in 17 years of follow up, and since Dr McDougall is retiring next June, he suggested she just have her regular doctor run this bloodtest yearly and not still go to a Thyroid doctor. I certainly was envious of her cancer; wish I'd had that one. Mine turned out to be a lot worse.
Sorry for the late update; we were home by 4:30 from all the appointments, but I was kind of tired and just was resting for a while.
I hope everyone has a good weekend, and hopefully the 3 units will be quick and I'll get to enjoy Sunday afternoon too.
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