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!!
Melinda Bachini

Re: Clinical Trial at National Institute of Health

WOW, Melinda, what a story! I am so wishing you the very best outcome, you are one courageous lady and thank you so much for this information. I am hoping you will keep us posted as this is one exciting post to follow. You must be one busy lady with 6 kids so I am sure you are glad to get your energy back! Tons of best wishes coming your way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Clinical Trial at National Institute of Health

Thanks for sharing Melinda. Sounds fascinating! I as so glad you are feeling better. Sending lots of positibe thoughts and well wishes. Keep us posted. Nancy

Loving my husband from afar.

Re: Clinical Trial at National Institute of Health

Melinda...I believe you are referring to this clinical trial:
http://www.ncbi.nlm.nih.gov/pubmed/19304471
Objective response rates were between 49% and 72% in metastatic melanoma patients.  I wish for continued success; someone has to be in the upper equation - why not you?
Thank you for sharing this important information with us.
A tidal wave of good wishes is heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clinical Trial at National Institute of Health

Thank you so much for sharing your story. It is another ray of hope for us. God willing the cancer cells in my body stay quiet, but I will definitely keep this in mind should I need. I don't tolerate chemo for long so this might be an option in the future if needed. I hope I don't but its good to know. Have a great holiday and celebrate!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

6 (edited by PCL1029 Sun, 23 Dec 2012 22:56:02)

Re: Clinical Trial at National Institute of Health

Hi,
This is the clinical trial.

http://www.cancer.gov/clinicaltrials/se … d=11220695

If you are older than or equal to 60 years old, you are not qualify for this clinical trial.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Clinical Trial at National Institute of Health

Hi, everyone,

The link is about adoptive T cells if you are interested.

https://www.landesbioscience.com/journa … =true&

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.