I have been given a few options to look into clinical trials for my health. For those who don't know what clinical trials are, there is a great site that explains it all:
http://clinicaltrials.gov/ct2/info/understand
However, I am all for the amount of research that will be gained from my participation this reason is only due to the fact that I am a scientist at heart. I am also a human being and I don't like the idea of being a lab rat the rest of my life. I would like to live a fulfilling life that has nothing to do with hospitals at all. Question to my readers:
1. Should I live my life to the fullest as a young adult should?
2. Should I start to look into clinical trials to save my life?
3. What happens if I spend the rest of my life in and out of hospitals and nothing changes?
4. What would you do in this situation?
5. Am I giving up on life by choosing to be happy first?
6. Normal is a life contained to a drug for the rest of my life?
7. How would you like to see yourself at the end? Describing what you have done around the world or what you have done in the hospital the past 6-9 years?
I don't mean to scare anyone but I have had this on my mind and I would like to know that my shorter life doesn't have to be connect to a lifetime of drug experimentation. I don't know the answers to all these questions myself but the opinion of those would be nice. :-/
Denise,
ReplyDeleteLook at the risks vs. benefits. This always is an individual choice.
What is your specialist recommending?
I know most people look at quality of life vs. quantity of life...
I want you to have quality and quantity. Please don't give up!
as rare as your cancer is, there are 14 trials available to you, Denise. They use lab rats and mice FIRST. Depending on which stage trial you pick, the trial is part of the FDA approval process. You would NOT be in a blind trial where you may get a placebo, and because you are Stage IV, there are many more options for you than for stage o (in situ) through Stage III
ReplyDeleteThere are also many more resources for you (travel expenses, lodging, airfare, disability funds...) than someone older and/or w/ less dismal prognosis. While waiting w/ Krysti at Vanderbilt last week, she met two other IBC (1-3% of all breast cancer) patients, also on trials. Did you know you can call ACS 24-7 to talk? I called them at 2AM after surgery with a problem they helped me through with!
Take care, darlin' and know i'm thinking of you!
Love, Rachel
P.S. still trying to uninstall the cyber patrol #!* on my laptop so I can sign up w/ my name as a member! That software will not even let me go to crazy sexy cancer, which I HOPE you have spent alot of time on! PLEASE order the DVD and read the book! She has EXACTLY the same VERY rare cancer as you!, 1st diagnosed in 2003!
You fight, you fight...when you are down to your last fight, then you can choose to live your life in any way you like. You are young.
ReplyDelete