Starting Clinical Trial at MD Anderson

THURSDAY, AUGUST 07, 2008 04:27 PM

Houston (over by Minute Maid Park)

Best thing about Jen's place is she lives walking distance from Ikea

Jen and I went to the Aquarium the day of the big tropical Storm (Eduard). It took me a few minutes, but I got up the nerve to pet the sharks too. That's Jen's daring arm.

Clinical Trial Update
Hello everyone. Well, so far things have been a little interesting. I missed my initial flight on Monday because it took 2 hours for me to check in on USAir. Nice huh? I checked in two minutes to late. So, I went standby for both flights. I made sure I was the first standby person they talked to and made sure they understood I HAD to get to Texas that night and then I didn’t let myself out of their site until they called my name for the flight. I literally got the last seat on both of my flights to Houston. As soon as I arrived, I turned my phone on to get a message from the trial coordinator to tell me that MD Anderson would be closed Tuesday (my appointment day) because of the possible hurricane named Eduard. What?!?!? After all that trouble? The news was basically telling everyone to get ready to evacuate Houston because of this possible hurricane which only ended up being a tropical storm. It rained a lot but other than that, there was no reason MD Anderson should have been closed and all the grocery stores should be out of bottled water. Either way, Jen and I went to the Aquarium and saw a ton of really cool fish and sharks, petted stingrays and baby sharks (I was totally freaked out but did it anyway).

After I stayed at Jens I went to Paul’s house. He dropped me off at the Galleria which is the biggest mall I have ever seen. I was there for 5 hours and didn’t make it everywhere. Of course I bought some clothes (what else could I do)? We worked out at Lifetime Fitness because he had a guest pass. Man, I miss that place. At night we chilled and watched a movie.

Today I am at MD Anderson. I have been here since 10am and I signed my trial paperwork, had a physical exam, got 10 viles of blood drawn, got a chest x-ray and I got injected with nuclear fluid for my bone scan which I get in a couple hours. It will be a VERY LONG day here. I am trying to get my CT scan in today instead of tomorrow evening. Everything was scheduled for Tues, but now my schedule is all messed up. I want to drive to Austin today with Jen and not tomorrow. My main reasons are: 1. I don’t want to go to MD Anderson an extra day 2. I’m excited to go to Austin 3. My Fantasy Football draft is Friday evening and I want to be there live for it.

What is this clinical trial I’m doing????
Well it is a trail for a new drug called a Parp inhibitor. This is a targeted therapy so it is supposed to attack only the cancer cells that have the BRCA genetic mutation. It is like a chemotherapy where it can cause decreased blood counts nausea and vomiting, but I don’t expect it will be bad at all. NO, my hair WILL NOT fall out. Yeah!! This drug is given orally in a pill. I do not get any chemotherapy with it. I have to stop getting Avastin but I will continue to get Zomeda for my bones. I cannot do any kind of hormone therapy while on the trial.

How does this trail work?
Well today I signed paperwork and got blood work and scans. Next Tuesday I start the study and get blood work and the pills. I’ll probably go home after this until the following Thursday when I have to be at MD Anderson for blood work. The Thursday after that I need to be here as well for blood work. Then, the last Thursday I have to spend the whole day getting blood drawn every hour on the hour for the trial. Fun huh? Can’t wait to see what my arm will look like after that. I can go home after the long day of blood drawing and continue to take the pills. I can get my blood work weekly at Beaumont in Michigan. I will have to come out to MD Anderson monthly after that. They are going to help me pay for flights and hopefully a rental car to drive back and forth from Austin.

What is a phase I, II and III trial.
Phase I is where they are trying to figure out the appropriate dosage of a drug. One group starts the study on the lowest dose and then they keep opening up the trail to groups on higher dosages until they get so high that the participants have bad enough reactions where they have to back off the dosage. A Phase II trial they are trying to figure out what dose level is more effective. My trial is a phase II. There are two groups. The first group gets 400mg 2x a day and the second group gets 100mg 2x a day. If I progress (meaning my cancer progresses) they can move me up to the higher dose if I need to. If it gets too bad or side effects get bad I can drop the trial whenever I want. A phase III trial is testing the drug further, but now there are usually double and triple blind studies. One group will actually get the drug, one group gets a placebo, and the other group is the control group. There is no way I would do a phase III trial at MD Anderson and fly all the way out here for a sugar pill. See, now you have just been educated on clinical trials (well, as much as I know, which is limited) I do know more but don’t want to bore you so if you have other questions, please email me.

Well, I feel like this is a boring entry. If it is it’s because I am at the most boring place possible. Well, there are some puzzles I might try to put together here on the tables. I’ll try to write something more exciting next time.
Okay everyone
Bye

Oh, Kevin gave the enormous monster zucchini to our awesome neighbors who always give me great gardening tips and they made him some zucchini bread. How nice!
Also, Austin’s 7 day forecast was something like 99, 100, 101, 102, 102, 101, and 100. Glad Angela and Kasey have a pool and I brought my bathing suit.
I’m working on a lesson on stress, but I haven’t had much time to write while I have been traveling. I don’t want to stress out about getting it done on time, so it might be a little bit.
Lastly, I have gotten a TON of phone calls lately and I am in extreme danger of going over my minutes. I just had a $200 phone bill two months ago because I went over. Try to email me more than call me if you can just until this month is over. Thanks
Okay now I am really done

Peace and lots of needles
Shannon