December 4th - Met with Dr. Shah (MDA Orlando)

If you tuned in last week, you would know that I was supposed to receive a phone call today from Dr. Ramirez, who I saw last week in Houston, regarading the MDA Houston recommendation for my case. While I was sitting in Dr. Shah's office today, MDA Houston happens to call them.

Would you believe that MDA Houston was supposed to review my case today in their Tuesday Review Board (they were supposed to have discussed it last Tuesday, but the Radiologist had not read the PET report or seen the films, which I hand delivered that day; they could not review it on Thursday because they had canceled their Thursday meeting; so today, at 1pm, they call my onc in Orlando to request the PET on CD. They claim that they cannot read the PET in the format that was provided to them; what the heck is up with that? what did they do before they were able to copy them on CDs? Why didn't they say something sooner, like last week when I was there and hand delivered the films to them? This is outrageous and pathetic. They had me open a complaint and speak to their Case Manager. He said that they were putting the Radiology reading on a fast track to make sure that the films were read and reported on prior to Tuesday's meeting. Today the nurse calls me to tell me that this now has top priority. Are they in the business of saving lives or what? OK.. I"m just venting because there is nothing I can really do about it. I'm just outraged that they could be so unprofessional. I do not even care what they have to say anymore. I'm proceeding without their advise.

So... about my meeting with Dr. Shah... She seemed to think that my best option would be to get into any VEGF inhibitor trial that I could get into; however, the only one that is even open and possible at this point is the VEGF Trap at SKM in NY. My onc needs to confer with their research nurse to see if they can work around my need to be on blood thinners.

She did not think it was worth going to Tennessee for the Topotecan/Pemetrexed trial. She felt I would be better off taking Topetecan here, by itself, in the weekly format. She said that there is no proof that combining with Pemetrexed would work any better, so it isn't worth going on trial. The only reason she feels that going on a VEGF inhibitor trial is worth it is because the drug is not commercially available for my cancer type (although it is being trialed all over the place).

I talked to her about petitioning the insurance companies and pharmaceutical company. She said that she has tried this for her breast cancer patients and not had any success. The only time she has been able to get it approved is if the treatment was started out side of Florida (because in Florida they apparently don't have to pay for it). Sounds like she is strictly taking about the insurance companies though and didn't get what I was trying to convey about going directly to the pharmaceutical company.

I don't think that they are willing to administer the drug unless they have pre-approval from the insurance company because the drug costs about 10K a month. Some how they have to pay for those clinical trials.

I happened to call Sorono again today about R763 - Aurora Kinase Inhibitor, and the trial is now recruiting again. So, I called my onc and left a voice mail for her to get me in on the evaluation process.

So here are my possible options, in no particular order:

(1) If SK agrees to allow me to be on blood thinners, VEGF Trap in NYC, requiring travel to NYC every two weeks

(2) R763. This is a pill taken for three days in a row, every 21 days. Would require travel to San Antonio TX every 21 days

(3) Topetecan weekly here in MD Orlando