Alright, I have my letter to Genetech all ready to start pleading my case next week if needed! I feel better now that I have at least done something!
My name is Tracy Murray. I have AdenoCarcinoma – Cervical with Mets to the lungs.
Unfortunately my cancer has been resistant to standard chemotherapy. My oncologist suggested we have my cancer tissue analyzed by Foundation One in hopes of finding alternate treatments. So off I went to have tissues taken out of my largest lung tumor. I have three tumors, and after the samples were taken this largest tumor was then ablated. One of the findings from Foundation One was the ERBB2 – Amplification. This led me to Clinical Trial – NCT0209141 sponsored by you.
I was accepted into the trial at the Oncology Hematolgy Care, Inc. Group in Cincinnati, Ohio. On April 23, 2015 I had my first round of Pertuzumab & Trastuzumab. I had a second round three weeks later and then I had a CT Scan.
This CT Scan has changed everything. The Radiologist reported, incorrectly, that my large tumor, the one that was ablated, had grown. I was then removed from the clinical trial. This turned everything into chaos of course, especially since a second technician noted that the other two tumors seemed to be positively affected by the treatments.
As soon as possible my primary oncologist, after consulting with a Doctor at Karmanos Cancer Institute in Detroit scheduled a PET Scan for me. The PET scan results were rather shocking. After two treatments on your drugs the PET scan was unable to locate ANY cancer. It was gone. It also confirmed that the ablated tumor was still as it should be, an ablated tumor.
My oncologists office contacted the Clinical Trial group in Cincinnati and requested that I be put back on the clinical trial since my getting dropped was prompted by an error from a radiologist. I received notification today that I cannot go back on these medicines that are without a doubt saving my life. I don’t know why yet. As seems to always happen when dealing with multiple busy oncology practices they’re having trouble communicating so now I will wait until next week to find out what this explanation is.
So this is my preemptive strike. Assuming that I will not be able to get back on the trial, what can I do to get these medicines from you so I can go on with living my life. I have worked so hard to be strong and healthy and I cannot let the mistake of one technician take that all away from me.
I am sure my primary doctor, Dr Tim Kasunik, or perhaps even Dr. Amy Wiese from Karmanos will be contacting someone somewhere to see if we can get these medicines and if we can find a way to have my insurance company cover the cost.
All I am asking in this letter is your acknowledgment that you have read it, and that someone remembers my name so when you are contacted I am not just someone on a piece of paper. I am the person you started that trial for, I am a success story that you would not otherwise know about.