Update on Dad's clinical trial experience

unclaw2002

Hi all,

My dad asked me to share his clinical trial experience with everyone on the Board who has been so supportive through his ordeal. And before you read any further please understand this is not for everyone and some folks here have chosen to stop treatments, or not go for clinical trials because they are in a different part of their journey. My dad was ready to stop chemo because it wasn't helping and was killing him --- but he wanted to see if there was a Phase III trial he could qualify for because he said he really didn't have anything left to lose and is okay with the prospect that he is only getting the sugar water and not the drug.

The information below is for information only, if someone is interested in more information let me know and I can get you the direct contact information and potentially help cut through some of the red tape. But remember that this is a trial, no promises and there is a 30% chance you won't even get the experimental drug. But for those looking for more options this might be of interest.

We had a wonderful Christmas together here in New Orleans with the entire family, including the grandchildren and even had my niece in China join the family via Skype, and last year we weren't even sure we would have today, much less tomorrow with my dad. We are so lucky and blessed.

Below is his post from his caring bridge site . . . http://www.caringbridge.org/visit/harrycollins2


"Here is my medical update --- also for anyone who is Stage IV EC with mets the folks at MD Anderson are looking for other participants in this trial. You can go to their web site and check out the information --- basically you cant have mets to the brain and have not received chemo in the last two weeks. If you are looking for an option when all else has failed then this might be a trial for you and the plus is that it incorporates the best pallative care for Stage IV EC --- and the agent has limited side effects. So it might be worth a shot. Dr. Ajani would love to have more participants, although there are over 600 worldwide there are only 2 at MD Anderson.

Speaking of VIP treatment - I can't say enough about the staff at MD Anderson. They have made me feel so special and looked after. Every Monday I look forward to my call with Patsy the research nurse on this clinical trial. She checks in with me to see how I am feeling, any side effects, arranges for my lab work and even tells me a joke or two while we are chatting. When I get to Houston I report in for lab work, yes they are vampires and I even give them extra blood for a special PD study (being conducted by Imclone) to measure the serum levels in my blood.

After my lab work I check in with Tony, Dr. Ajani's clinical nurse. Dr. Ajani is patient and takes all the time with me that I need to answer questions and talk about what is happening with my cancer and the treatment. It is like being back in college with a professor. He even draws pictures. This really is a post-graduate education I never wanted but if I had to do this I am glad that I found Dr. Ajani. And then there is Jackie who makes sure everything is taken care of and keeps all the reports, my journal and everything else straight.

So my platelets held up and I was able to have another treatment last week. This was my second treatment, on Thursday I have another blood test to determine if I can have the third treatment on January 4th. Then two weeks later I will have a CAT scan on the 18th of January to determine the progression of the cancer . . . if the tumors haven't grown and the cancer is stable then I can continue in the program. I guess that would mean I am getting the drug. If I am no longer able to do this trial and if I am willing the doctor has spoken to me that there might be a possibility of being treated with a special drug developed in Japan - more on that later we will see.

Thank you to everyone for all the prayers,

Harry"

Happy holidays and much love,

Cindy

Boston67

Thank you so much
Hi,

Thank you so much. God bless you.

Keith Rodney
Boston age 67
Stage IV

GerryS

my thoughts and prayers are with you today....
I just finished reading your story. So well written and from the heart. I am sorry you have to go through this. I hope that more can be learned to conquer this disease.

I was diagnosed in Feb. 2010. Stage 2,N1,M0. Surgery followed by chemo. I am full of gratitude this Christmas season as I realize it could have been so different. I have just a few lingering effects from chemo and surgery but for the most part am doing very well. I am 58 and this really throws your life for a loop.

Thanks for sharing...

Gerry

sal314

Thank You for Your Update
It was good to hear from you. And to hear that your dad is doing well.

Will continue to pray for you, your dad and family.

Blessings,
Sally