Brain Cancer Messages
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Kristy

Dear David,

Once again we are undergoing parallel experience (you'll recall that I took Temodar for a year), despite the differences in our diagnoses (I'm the one with VIPoma/islet cell tumor, the rare neuroendocrine cancer). I too am undergoing testing, tomorrow, to determine whether I am eligible for a clinical trial. This is a Phase III trial for RAD001 in islet cell patients. The difference is that it is placebo-controlled, so there is a 50% chance that I will get a placebo. However, if scans show any disease progression (my cancer is slow-growing) after 3 months, then they will unblind the study and put me on the drug if I have been on the placebo.

Anyway, I will have all of my tests, which are pretty much the same as yours, tomorrow. If everything checks out, I'll start the trial next week. So, it will be interesting to compare notes from our position as research subjects. That's one caveat about trials that I have been advised to keep in mind: while certainly our doctors have our utmost care as their top priority, the bottom line is that we are research subjects in these clinical trials. I have a long list of questions for my trial coordinator, e.g., regarding the extent to which we can intervene to address side effects and other issues. For example, this drug can raise cholesterol, for which I believe I would be able to take Lipitor if necessary. However, I also know someone who repeatedly had low platelets while on the drug and was removed from the trial rather than having the option of transfusions to keep his platelets up. So, that's a big question for me. Then there are issues regarding the timing of each appointment -- they have to be very carefully timed to adhere to the trial protocol -- and the fact that I need to travel from NC to Tampa for every appointment, at minimum monthly for 12 months, and much more frequently (e.g., 4 times in 5 weeks) at the beginning. What happens if there is a hurricane and I have to reschedule my appointment? Will they kick me out of the trial? Etc., etc. There are a lot of logistical issues that I need to address, including arranging child care for my 7-year-old so my husband can come with me.

So, this clinical trial experience is a whole new world. Most importantly, I am just trying to stay as rested and relaxed as I can, as stress exacerbates my symptoms, as I know it does yours.

I look forward to comparing notes on life as a research subject. Good luck!

Kristy

Posted Date: 28 August 2008

J.S.

It's the weirdest thing, in my Firefox browser the last date I get to see is Sunday. But in my Safari browser it's current. I've shut down Firefox and restarted and it still goes back to Sunday's post.

I don't know if it is on my end or not.

By the way, I'm glad for you that it looks like things are going to move ahead and that most likely you will be in the clinical trial.

~julie

Patient Perspective from David Welch
I must respond to this message immediately. We just switched to a dedicated server this past weekend. This will have tremendous benefit in the long run. I will have Blue Water Media immediately look at the issue you raised and get it resolved. Thanks for the heads up...and for the well wishes.

Posted Date: 27 August 2008