HER2 Support Group Forums - View Single Post - How do I make a decision about entering trial?

AlaskaAngel · 09-18-2006, 12:01 PM

I am NED. I have been in one clinical trial for 4 years, completed another one 2 years ago, and just started another one last year, plus have donated a blood sample for a blood pool of people who have had cancer that is used by various major institutions across the country.

For he clinical trials I participated in, only one involved taking any kind of drug and I knew it was potentially hazardous to my status of being NED.

So far, all of the clinical trials I have participated in have been NIH trials and not run by lesser-known organizations that might be more likely to cut corners with either the basis or the conduct of the trial.

The clinical trial coordinators were very straightforward and helpful to me as I pursued participating. One nice thing is that you can make the inquiry without obligation to participate, and ask all the questions you like without having to commit to doing the trial.

I continue to watch for more opportunities to contribute to documenting a rational basis for better treatment. Because of that, I am especially disappointed that researchers actively prevented me from having reasonable information about options for treatment with Herceptin for my own diagnosis. (I am part of what I call The Lost Regiment of HER2's, who were not eligible for the clinical trial but considered at high enough risk to endure chemotherapy, radiation, and hormonal therapy...!)

I also hope your oncologist was more helpful than mine. At time of diagnosis I was clueless about how to look into clinical trials and made the assumption that my oncologist could help me when I said that I wanted to participate in a clinical trial. Perhaps he was very tired or burned out when he responded, and limited the discussion by dismissing me with "There are thousands of clinical trials." I did not know of sites like this one at the time, or of anyone who was a participant in a clinical trial. Eventually I stumbled around and found the clinicaltrials.gov website and took it from there on my own...

Best of luck with your decision,

AlaskaAngel

09-18-2006, 12:01 PM	#9
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Learning about and participating in clinical trials I am NED. I have been in one clinical trial for 4 years, completed another one 2 years ago, and just started another one last year, plus have donated a blood sample for a blood pool of people who have had cancer that is used by various major institutions across the country. For he clinical trials I participated in, only one involved taking any kind of drug and I knew it was potentially hazardous to my status of being NED. So far, all of the clinical trials I have participated in have been NIH trials and not run by lesser-known organizations that might be more likely to cut corners with either the basis or the conduct of the trial. The clinical trial coordinators were very straightforward and helpful to me as I pursued participating. One nice thing is that you can make the inquiry without obligation to participate, and ask all the questions you like without having to commit to doing the trial. I continue to watch for more opportunities to contribute to documenting a rational basis for better treatment. Because of that, I am especially disappointed that researchers actively prevented me from having reasonable information about options for treatment with Herceptin for my own diagnosis. (I am part of what I call The Lost Regiment of HER2's, who were not eligible for the clinical trial but considered at high enough risk to endure chemotherapy, radiation, and hormonal therapy...!) I also hope your oncologist was more helpful than mine. At time of diagnosis I was clueless about how to look into clinical trials and made the assumption that my oncologist could help me when I said that I wanted to participate in a clinical trial. Perhaps he was very tired or burned out when he responded, and limited the discussion by dismissing me with "There are thousands of clinical trials." I did not know of sites like this one at the time, or of anyone who was a participant in a clinical trial. Eventually I stumbled around and found the clinicaltrials.gov website and took it from there on my own... Best of luck with your decision, AlaskaAngel