Topic: Clinical Trial at National Institute of Health
It has been a very long time since I have posted to this site. I was diagnosed with Intrahepatic CC on 12-1-99. I had a 2/3rds liver resection only to find mets to my lungs 3 months post surgery. I have done chemo for past 2 yrs. Started with Gem/Cis combo which was very toxic to me, tried Gem alone with no success and then did Avastin until the toxicity build up again. I have numerous mets to my lungs and about 6 or so 3-6cm tumors on my liver again.
I have always kept my eyes open for clinical trials but found it very hard to get excited over more chemo. I believe that my discovering this trial at National Institue of Health was meant to be. It is called the GI-TIL trial. It is a tumor infiltrating lymphocyte immunotherapy trial. They have been using it successfully for melanoma for quite some time and have just recently opened it up for GI cancers. I am the 9th person to try it, but the first with CC. The first 8 people were unsuccessful.
I met with the research team in March and was accepted into this trial. There is certain criteria and I can't remember all of it, but you had to have been off chemo for a month and are showing signs of progression. The information is online and you can call a nurse specialist to get all the details.
My husband and I returned to Bethesda, MD about 2 weeks later and I had 4 tumors from my left lung removed. The docs then take the lymphocytes from these tumors and grow them in a lab for about 30 days. We then returned again for a 3 week hospital stay. The first week they give you 2 chemo drugs, not to treat the cancer but to suppress your immune system. The first drug was rough and the second was not as bad. The second week they infused 42.6 billion of my lymphocytes they had grown back into me!! They also give you a drug called IL2 at the same time for up to 15 doses or as many as you can handle. I only made it to 4 doses. The 3rd week was recovering my blood counts enough to go home.
I just had my 3rd monthly checkup and I have had a total of 23% overall shrinkage since this treatment. They consider 30% successful, so I am hoping to hit that mark next month! This is a one time treatment, and all I know is everyday that I don't have to do chemo is a GREAT day!
I have been leary to share with you all in case it didn't work, but then I thought it was worth sharing and let you all check into it as you seem fit.
I am almost 44 yrs old, married and have 6 children. It was worth it for me to try this treatment. The 3 weeks in the hospital was hard, but about a week or so after I got home, I started to feel better than I had in years. A chronic cough I had disappeared, my energy level increased drastically and overall just better.
We live in Montana and the good thing about this trial is that it is a Federally funded trial so they paid for all the medical costs plus my travel airfare and give you $50/day towards expenses, which doesn't cover much in that area, but was better than nothing. I also have a brother that lives 30 miles from the hospital so it all worked out well for us.
I just thought you should all know about it.....God Bless!!