Conditioning phase is completed

Here’s a photo of Beth, after her final dose of radiation. She’s listening to the Radiation RN talk about what some of the side effects will be. She believes the radiation was worse than the chemo, but the radiation therapists joke with us and say, “that’s just the chemo kicking in”. We still don’t have a straight answer on that one.

Beth now has made it through the entire process, not feeling too well, but medically, she’s responding the same way they expect her to respond. She’s got ongoing nausea and diarrhea, and is very tired an achy. But the good word is that we can start to expect that her numbers will start going up.

We should be close now

I spoke with the Transplant Coordinator at West Penn yesterday, and the testing from all three donors is in now. All three of these match on 10 of 10 HLA (DNA) categories. All are three are female; two are younger, one is older (described as “under 50” still); two are international, one is domestic. Their blood type and age will be considered in the decision. Doctors should decide soon now. And it could be 3-6 weeks till Beth starts her conditioning regimen.

“Vampire Bride”

Beth is in a “pre-conditioning” phase at this point. She had her first round of Vidaza, a low-intensity, genetic-based chemotherapy, from June 25-29 (five days). She gets three weeks off from that, then begins another round July 25. The doctors have told us that she will undergo either “two or three cycles” of Vidaza. At that point, we think, she will be ready for “conditioning” – the really hard stuff, which I’ve seen described as “intensive chemotherapy and full-body radiation”, the intent of which is to kill as much of the disease as possible, followed by the “bone marrow transplant.”

(I keep putting that in “quotes” because it’s not really “bone marrow” that gets transplanted, it’s stem cells from the blood of either an anonymous adult donor or blood from umbilical cords.)

She actually worked last night and has plans to be working each of the next seven nights – she’s keeping an obligation she made several months ago to cover for a friend who was going on vacation. Her nurse said that’s a good way to keep her mind focused on something other than her illness.

Physically, she seems to be tired a good bit, and she tends to get discouraged a lot. That said, she seems to be responding well to the first round of treatment.

The MDS mostly affects pre-blood cells called “blasts”. These “blast” cells are like primordial blood cells – in healthy people, they “grow up” and differentiate into red blood cells, white blood cells, and platelets. The cancer process somehow prevents these “blasts” from growing up. They remain as blasts, and they remain in the bone marrow, where they continue to “gum up the works”.

So as her red and white blood cells die off (and they do in all of us), they are not replaced. Whether the diagnosis is MDS or a more aggressive form of leukemia really depends on the speed at which this process occurs. But my understanding is that it is the same process.

They treat symptoms of tiredness with blood transfusions, and they watch her hemoglobin levels closely. Let me give you an example: she also worked last weekend (Friday, Saturday and Sunday nights). Last Thursday, her blood level was down to 8.2 (normal is 12-15) – this makes her feel crappy, and is low enough for her to require a transfusion (I think if it falls below 8.5 they want to give her blood).

Because it was a holiday weekend, there wasn’t enough time to make arrangements for her to get her transfusion. (Two pints of blood – it takes about 6 or hours for that entire process.) So she worked all weekend, and had her blood tests again on Tuesday. The good news is that her blood level stayed at 8.2. (That is, with all the hard work, and all the dying off of red blood cells, and she still managed to keep her level. That indicates that the Vidaza is enabling her body to produce its own blood cells.)

We did manage to get her to the hospital on Wednesday this week for her two-pint transfusion. I was calling her my “vampire bride”.

But the hard part is yet to come.