Friday, February 20, 2009

Last notes before the battle...

So today was supposed to be a short day and ended up being long.

Went to the clinic to meet with BB. I figured it would be a 30 minute consult, and then the day would be free. That's what it said on the schedule.

We showed up at 10AM and left at 5PM.

Some notables:

1. I have been randomized into the "lite" protocol. I was advised that there is "nothing lite about it" but it should have lower toxicity and fewer side-effects than the "standard" protocol -- and it means six fewer weeks in Arkansas. This is all good and fine...provided the efficacy is the same. BB assures me he is certain that it is. And if it isn't working, he will take me off protocol and nuke me good.

2. Tomorrow, I get a test dose of Velcade by injection. This will be the first slap to the face of my cancer. On Monday, they will do a bone marrow biopsy and a gene array to determine how the Velcade works on the cancer. If it works very well, or poorly, BB will adjust the therapy accordingly. Also on Monday, they will surgically install a central venous catheter in between my clavicle and sub-clavicle. Which means I will have an IV in place for several weeks, sticking out of my neck. Sounds awesome!! But it does mean they'll do all their blood draws, chemo pushes, etc. through this port. Monday afternoon, I will get a test dose of Melphalan, and then another bone marrow biopsy on Wednesday to see how the cancer responds to the Melphalan. Again, they'll have the ability to tweak the treatment based on that data.

3. On Wednesday afternoon, full induction begins -- velcade by IV push, thalidomide in capsule form, dexamethasone in table form, and then the four chemo elements in induction (Platinum, Adriamycin, Cytoxin/Cyclophosphomide, Etopside). Collectively, VTD-PACE. This phase will last a total of eleven days, during which I'll be given two kinds of shots in the belly twice per day each to boost blood counts and fight clotting. When the blood counts return, they will swap out the venous catheter for an even bigger one, and give me shots to stimulate stem cell mobilization. They'll harvest my stem cells through the big gauge catheter, and then the transplant begins.

4. The "lite" protocol transplant consists of 4 days of high-dose chemo, but lower than the standard regimen. Standard is 200 mg/m2 of Melphalan over 24 hours; lite is 50 mg/m2 per day for four days, while continuing VTD for their believed synergistic effect. After this, I'll be given some of my stem cells back, and they'll shoot me up with meds to help my counts return. When my counts return, they'll remove the central line, and I'll take a break of around 3 weeks -- this will be my chance to go home and see the kids. I'll continue taking thalidomide and dex during this break, daily. I may or may not need daily belly injections for the clotting issue.

5. When I come back, I'll do another transplant, followed by some thalidomide and dex daily for a week or so, followed by one cycle of consolidation therapy which will be the same as the induction therapy.

6. Then I'll return to LA, with quarterly visits back in Arkansas, and I'll spend THREE YEARS on maintenance therapy consisting of oral thalidomide and dex, with weekly visits to a doctor's office for injections of Velcade.

It has been hell fighting the insurance company, and also fighting to make sure I can be sedated for all the painful procedures here. There's no clinical need for me to be alert and feeling everything in a bone marrow pull, a needle aspiration of a tumor, or the central line placement -- ALL OF THESE are done under GENERAL anesthesia at City of Hope, and at other centers from Dana Farber to Mayo Clinic they are done under conscious sedation, which is what I'm demanding. Yet I'm made to feel like I'm weak for doing so. Well, frankly, screw anybody that doesn't think I need it. There's no point in having pain for no reason, least of all because they don't want to be bothered with scheduling an anesthesiologist.'s been a long, strange trip, as a band I'm not fond of once sang. Tomorrow at 11AM Arkansas time, the fight begins in earnest. I'll post on that, as well as the wealth of meds (9 types so far that I'll take in pill form daily, plus another three given through IV, PLUS all the chemo) that I'm on and their side effects -- sobering. But I'm ready.

Thanks again, all, for your support.