Alta Bates Nitty Gritty

Day + 192??? Hard to know these days as one day slips into another here at Alta Bates. I have to comment that being here at Alta Bates for John's care is like being home. Grethen his day nurse since John has been here knows John really well. She shared John's first Mylotarg adventure and first bone marrow transplant and induction chemo. She fits with John like an old shoe, comfortable and John trusts her.

Today he is feeling pretty punk. He has a migraine headache. As a precaution, Dr. Wolf put him on extra steroids and morphine just in case it is Mylotarg getting into John's brain. John thinks it is just a really bad headache so we are keeping it dark and quiet in the room. This evening my sister Audrey will come up for the weekend to help. Of course it is hard to leave John to work tomorrow, but my rent is not paid by magic and my clients have been so patient that I feel I must go. Beside, over all John is doing okay.

Yesterdays labs did not have as many blasts as on previous days, but Dr. Wolf came in and said John's bone marrow showed no signs of the donor cells, which means John's cancer is trying to win the bone marrow war. However the blast count was up to 22% again this morning. But not to worry the Mylotarg is a special chemo that targets only cells expressing "CD33" and luckily all John's leukemia cells are expressing this enzyme. This is good news since we now know that the Mylotarg will target these cells. Not sure how much, but I have confidence John will respond amazingly well as always. The plan is to freeze the donor cells if he needs another dose.

His regular blood work was unremarkable except his LDH his up which often goes up when the liver is trying to process bad/dead cells. I read this as leukemia cells are already dying. Once donor cells are in place and no more leukemia cells are present it will give the donor cells a leg up to really establish a place and ultimately win this war.

Thank you for the many messages of support. John will be okay.

Day 191 John officially began chemo at 11:30 this morning. It was decided late last night that Mylotarg (the less invasive) is the right one to give at a much lower dose, about a 1/3 of what he got last time. Dr. Wolf has been pre-treating John with steroids to prevent any meningitis that happen last time, plus if he does have a reaction with the lower dose it should be easier to handle. A week from Tuesday, April 27th Dr. Wolf will do another bone marrow biopsy and if all cancer cells are gone he will infuse donor cells on April 30th. If there are still cancer cells and all has gone well for John with the Mylotarg Dr. Wolf will infuse the rest of the 2/3 dose and hope it will bring remission. In the meantime the donor cells will be frozen for later infusion. We have confidence that the Mylotarg will bring remission since it has before so no reason to believe otherwise.

Today’s blood count was a bit down from yesterday. I do not have any of the details, but no blood products to infuse since John is doing well. If it is interesting I will report it tomorrow as I am trying to see where the blast count is today compared to yesterday (1%) and last week it was up and over 22%. I think giving him the antibiotics and blood has helped his body fight off some of these cells.

John is sleeping today because of the pre medications given just in case he has an allergic reaction so it makes it a quiet day here at Alta Bates.

Day + 190 Second uneventful day here at Alta Bates. It has still not been decided what type of chemo (Mylotarg vs. Ara-C) because Dr. Applebaum of the Hutch in Seattle and the main doctor to test Mylotarg is against using it on John. COH's Dr. Forman thinks it is best and will preserve what is left of the donor cells. John is for taking a chance and going for the Mylotarg which will preserve not only donor cells, but his hair which was just starting to come in thicker.

John had a bone marrow biopsy today to see the percentage of donor cells left in his marrow. If all goes well, and this is our big news...They will infuse donor cells on April 30 here at Alta Bates. All has been approved to have the cells sent. Dr. Jim John's donor has agreed to donate cells again (God bless him with good health...and winning my portion of the lotto).

Today because of the 4 bag infusion of platelets they were at 86 and because of the 2 bags of red cells his hemoglobin is at 10.4 today. John's white cells are still pretty messed up, with a total neutrophil count below 200 and blasts are still circulating in his peripheral blood, however less than yesterday so I think the blood product infusions have helped John.

I will post again tomorrow as I am borrowing an ER doctor's computer since John would not share his. He has new energy with healthy red cells floating around and the toe infection is completely under control with vancomycin.

Day +189 John is settling into his room at Alta Bates. We are watching the mini series "OZ" originally shown on HBO. We have three seasons to get through so it may last us a least this week.

Today it is pretty uneventful, John got 32 units of platelets and the triple lumen is in place. Dr. Wolf is still waiting for word from the Hutch, but I am sure they will decide to use the Mylotarg. Today John should get red cells as his hemoglobin was down to 9.2. If not today than tomorrow.

Day + 188 Well here it is in a nutshell. John will become an inpatient at Alta Bates (hence the blog's name change) tomorrow morning. John's platelets were a mere 18 today so tomorrow they are going to fill him up until his platelets reach around 70 and place a triple lumen line in him. Wednesday they will begin most likely Mylotarg. Dr. Wolf was waiting to hear from him friend and colleague Fred Applebaum who administered the trials for Mylotarg and wants to make sure this is the drug to use that will destroy the leukemia cells, but preserve the donor cells. The only hesitation if anyone remembers from last May is that Mylotarg nearly killed John when they used it last time. Mylotarg crossed John's blood/brain barrier and caused menegitis. But because they know this is a possibility they will pre-treat John with a steroid called Solumedrol (spelled incorrectly) which is what pulled John out of the Mylotarg abyss last time. Once good thing about Mylotarg is it did put John into a 3 month remission so there is no reason to doubt that it will do it again.

If the decision is that John is not a candidate for Mylotarg they will use Ara-C but at a much lower dose than they have used before. John has had Ara-C several times, and the down side is that the leukemia cells may have become resistant to Ara-C. It is all a crap shoot right now.

Today John's CBC was pretty cancerous. His white cells were again down to 1.5 with very few neutrophils (and 22% blasts); his hemoglobin was 10.2. Thanks to the Epogen shots John has taken once a week at least he has warded off red blood transfusions so far. He also had a two hour IV infusion of Vancomycin (an antibiotic) so that pesky toe infection will go away and will probably stay on the drug until he has a little bit of white cell recovery.

The plan is to update the blog most days while John is at Alta Bates.