Topic: Update on NIH trial

Hi everyone!

I am so sorry it has been so long since I have posted.....no good excuse. I will do my best to catch you all up on what has been happening.

I believe the last I posted was that my tumors were just starting to grow after a great year on this trial.....last August when I went in for my checkup the team of doctors deemed progression and became urgent to repeat the TIL protocol for me. They explained that my DNA mutates somewhere around 20 times before it turns to cancer and that they had identified a specific T cell of mine that recognized a specific mutation.  I am sure that I am probably not explaining this exactly as they did, but this is how my simple mind understood it. This was discovered after my first treatment. They wanted to retreat me as soon as possible and I was all for it!!!

In September 2013, they removed 3 of the larger tumors from my right lung this time....now I have matching scars on each side:) They harvested the lymphocytes and grew them in the lab again for 3 weeks, specifically growing the cell that is reactive to my tumor.

In October my husband and I returned to NIH for treatment. I felt stronger going into this treatment than the first but I have to admit it was harder this time around.....the week of chemo to suppress my immune system sucked as usual but was tolerable. This time I received 127 BILLION cells back into me with about 90-95% of them being that "special T cell".....compared to the 42 Billion the first time with only about 25% of them being that " special cell". I again only made it through 4 doses of IL2, which hit me harder this time around. IL2 helps to facilitate the cells to be active or something like that, all I know is it gave me some pretty comical hallucinations and sent my creatinine through the roof. It also was harder this time just because of the number of cells infused. It was a huge immune response...which is what makes you feel yucky when you are sick. I made it, and my counts came back enough to go home on November 8th. Recovery was a bit harder this time but within 2 weeks I was up and at it and each day got a little better.

My first checkup was December 5th, 2013....with GREAT results. My liver tumors had shrunk and most of my lung tumors as well....they estimated about a 15% overall shrinkage in the first month. I am due to head back to NIH in the morning and I will have results of my second checkup on Thursday. I am expecting great results again. I have felt awesome, even skied on Christmas day and kept up with the kids!

I invite you all to look at my caring bridge site www.caringbridge.org/visit/melindabachini ....I tried to document this treatment as best I could this time around.

I will update with results this week....you are all always in my thoughts and prayers .....hugs, Melinda

Re: Update on NIH trial

Melinda...thanks for posting it twice.  I have responded to you on the other thread.
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: Update on NIH trial

Melinda,

Thanks for the update.  Sounds like you are doing well.  Looking forward to hearing more good news after your check up on Thursday.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on NIH trial

Melinda, do you have the name/number of your clinical trial? Was it just for the lungs or were you treated for CC? I am very interested to learn more. Who was your doctor? Thanks, Judym

Re: Update on NIH trial

Judy....I believe this is the clinical trial:
http://www.clinicaltrials.gov/ct2/show/NCT01174121

You might want to reach out to Melinda via her personal e-mail:
click on her name in the signature box
scroll down to her e-mail.
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: Update on NIH trial

Thanks Marion.

Re: Update on NIH trial

You are welcome, dear Judy.

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: Update on NIH trial

Well done Ms Bachini!! I saw the manuscript in the new issue of Science today and thought- "yes I know that case.  She's been sharing her updates all along." What a major wonderful contribution you have made to science and a more effective Tx option for this disease in the future.  You're a rock star!!!!

Re: Update on NIH trial

You are famous!

The article is behind a paywall, but here is a nice write-up of the results.

http://medicalxpress.com/news/2014-05-w … tment.html

Jason

Re: Update on NIH trial

Oh, and she is in the New York Times as well.  I posted it under a different thread.  Famous is right and for all the good reasons.
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: Update on NIH trial

Thanks you guys for posting these...I am so glad they showed the CT of the tumor reduction! Every time I see it...I get goose bumps! Thanks for all the support!
Melinda

Re: Update on NIH trial

NBC too!

http://www.nbcnews.com/health/cancer/ne … er-n100811

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on NIH trial

All this coverage.  It's totally AWESOME!!!!!!  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.