Arkansas, Day One

Started at the hospital bright and early today for a fine needle aspiration of my large sacral lesion. The doctors apparently love this thing, it's the same one the orthopedic oncologist biopsied back in December. I mean I guess at 4.9 cm it's nothing to shake a stick at. They wanted to start with this before treatment to do the gene expression profiling tests on cells taken from the lesion. Previously they did that on a general bone marrow biopsy, but were interested to see if things were the same in the more focal lesion. Luckily I'm a pro at having needles jammed into my bones. ;p

After this I was supposed to pick up some info and check in with the nurse at the clinic. We figured we would have most of the day to finish getting settled in and check out some alternate lodging options (since the place we rented for the month leaves a little to be desired). The nurse told us I could go ahead and randomize and get started instead of waiting (yay!) so it turned in to a full day at the clinic (boo!).

I guess an overview of the protocol is probably in order now that I used the term randomized out of the blue. Basically there are two "arms", or versions of he protocol they are comparing to each other. The standard arm is a bit longer and contains two additional cycles of chemo, the lite arm is a slightly scaled back version. Here is the breakdown:

Standard Arm:
two 11-day cycles of a 7 drug regimen
transplant 1
transplant 2
two 11-day cycles of a 7 drug regimen
3 drug maintenance for 3 years

Lite Arm:
one 11 day cycle of a 7 drug regimen
transplant 1
transplant 2
one 11-day cycle of a 7 drug regimen
3 drug maintenance for 3 years

The Lite arm requires ~ 1 months less "face time" in Arkansas and can shorten the time it takes to get to maintenance by ~2 months. Because of all the logistical considerations we were really hoping for the Lite arm. I wasn't holding my breath since luck hasn't exactly been smiling down on us these past few months, but I did seriously want to hug the nurse when she came back and told us it would indeed be the Lite arm.

I had to meet with the PA first and talk to another nurse, then it would be off to the clinic for my first dose of one of those 7 drugs in the initial regimen. That all sounds simple but somehow it turned into a 5 hour project! The only unexpected thing that came out of that project was a mention of possible needing a vertebroplasty to prevent compression fracture of one of my vertebra. There seemed to be some confusion as to whether this was really necessary, and then some confusion as to why no one had mentioned doing it before. Then after all the confusion died down there was a consensus to have the radiologist review the old PET scan again and make a recommendation. Fine by me, especially now that I see the worlds leading authority (wikipedia of course!) calls the procedure controversial.

The other eventful thing was getting my list of "other medications". These are not chemotherapy drugs, but rather drugs to help keep me from getting sick while getting chemo. This includes an antibiotic, an antifungal, two antivirals, and heartburn medication.

After all that it was time to hurry up over to the infusion clinic for the first dose of something to kill the cancer cells! They told me it would be a quick "push" and I'd be out of there in no time "once they get you all set up"...and it was that getting me all set up part that was the kicker. We waited for about an hour for the drug to be delivered. At least they gave me a heated blanket while I waited, and we chatted with the nice couple in the next bay over. He's 12 years out from his diagnosis.

Finally the drug came, looking very nondescript in a syringe. Velcade, 3.5 mg. Probably >$1000 for the contents of this vial.


It's a newer generation drug called a proteasome inhibitor. It basically mucks up the garbage cans inside your cells and prevents the trash from getting picked up. Cancer cells generate a lot of trash and the buildup causes them to self destruct. Clever right?

It was an entirely uneventful i.v. injection, but the boxing gloves are out and the fight is officially on!