Thursday, July 31, 2008
Hi everyone! Below is the latest on Josh. Please pray that God is leading him to the decisions he's making! Please pray that he will get some relief from the pain and the swelling.
I met with my Tucson doctor yesterday. He really doesn't want me to have surgery. He thinks it's a bad idea. He is, however, going to send a referral to a surgeon in Texas at my request. The doctor in Texas did a surgery on another DSRCT patient, that I've been talking to, that no one else would do. His colleagues called him crazy but he said he'd do the surgery again in a heart beat. We'll see what he says after seeing my records.
Tuscon doc says I look way better than he expected me to look considering everything. So I guess that's encouraging. He says there is really nothing they can do for the swelling.
I told him that I was using Perkoset every 2 hours for the pain, but I've read that it's not good for the liver. The past couple of days I switched back to the Dielodin which last for about 4-5 hours before I have to take it again. The biggest problem with the Dielodin is that it takes about 1.5 hours to kick in, so I'm in pain unless I overlap my dosage. The Dieloding also makes me puke occasionally and makes me itch as I come down. He prescribed me a slow release Oxycontin that should last me 12 hours, so I'll take that twice a day and I should stay above the pain threshold. He also said that this dosage should take care of the pain without making me feel drugged, so maybe I'll be of some use now. I just started it last night and I took it again this morning so we'll see how I feel on it. So far no pain, and just a little druggy feeling. Mostly I think it's making me drowsy. I'm also taking Lyrica, which is also a long lasting pain killer, twice a day. The combo seems to be good so far.
The clinical trial that my Tucson doc wants me to start (in Tucson) is still on hold pending the result of the tests they're running on my tumor samples. The tests should take another week. I told him about the one starting in the next 2 months that's the R1507/Everolimus and he thinks that would be a good trial to get into, however he kinda hinted that I shouldn't wait for it and I should start the other IGF-1R inhibitor that Santa Monica doc wanted me to start. I still feel like the the 2 drug combo would be worth waiting for so in the mean time I'm going to continue my current treatment (ET743).
I did the math and I'm actually spending between $446 and $500 per trip for just the flight, hotel stay, and cab fare. The difference is whether I book my flight early enough to get the "Get away" fare. I called Angel Flights (a volunteer group that arranges flights for medical patients using private pilots/planes) and got setup with them. I pushed my treatments back a week to make sure my counts would be good enough for treatment so we can avoid changes with the flights. Since these are volunteer pilots (using there planes, fuel, and time) it's best to have a firm date/time for travel. Many of these pilots take off from work to be able to fly patients. This will make my treatments every 4 weeks instead of every 3. What they do now is put my travel dates into a system and pilots can pick a flight that they are willing to do. So now I wait until a pilot or several pilots pick my request. If this works out, it will save us $246-$300 dollars each trip. Plus they'll be able to fly me into Santa Monica, so cab fare will be cheaper too.
I think that's it for now.