Monday, September 21, 2009

Big C Update

I was accepted into the Clinical Trial and will begin tomorrow. Day 1 includes 12 hours in the hospital, mostly just to monitor my reaction; I will have a blood draw every 2 hours. I will also have a bone marrow biopsy and have requested IV sedation for that. It may mean dealing with my dear friends from Intervention Radiology (aka the IR Pricks) but I really do not care to be awake for that procedure, so it's worth a risk to me. I return to the hospital Wednesday morning for one more blood draw, and then I'm on my own. The drug is in pill form, so I'll just take one a day for 28 days, then return to the hospital for a repeat of Day 1.

I'm hopeful for good results from this drug but if it doesn't work out, I can always go back to Velcade, or Revlimid, or another agent. The good thing about the clinical trial is that it does not include a steroid. I know the steroids mitigate a lot of side effects, and help with stamina and pain management, but I really value my sanity so it seems like a fair trade-off.


John said...

Hi Nancy;

Glad you were accepted into the trial. I hope it goes well.

tim's wife said...

Great news. Good luck tomorrow.
Hope it all goes smoothly.

Karen said...

Hi, Nancy. I'm 100 percent with you on the IV sedation for the biopsy! The first time I had one (at an evil doctor's office in Kansas City), I was NOT sedated. I asked if I could be sedated, and I was told, "Oh, you've been through childbirth, so you should be able to tolerate the pain." Yeah, any medical procedure that's compared to CHILDBIRTH clearly requires sedation! They always sedate me at the Mayo Clinic. Whew.

Also, what is the clinical trial drug that doesn't require steriods? Awesome!

I realize this comment has gone on way too long. Best of luck with everything!

La Cootina said...

Thanks for everyone's good wishes.

Karen, the drug is called Entremid, although in the study it's referred to as ENMD2076.

Re the IV sedation...that makes me SO angry!!! They've created a monster. Any time someone in a white coat challenges me: "Are you telling me that I cannot (insert request here)? Who do I speak to about appealing that decision?" It's STILL hard for me to stand up to them, but we have to take back the power to make our own informed decisions. We HAVE to.

(Maybe that's my raison d'etre: whenever a white coat bullies me, I'm going to bully right back. I'm going to disarm them and let them know how it feels.)

Karen said...

Thanks, Nancy! I am off to Google Entremid!

Yeah, I quit going to Evil Doctor's Office after the whole biopsy thing. He sucked!