Re: Update on NIH Trial

YEAH!!!

so happy to read this update-

Lots of hugs,

Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Update on NIH Trial

I'm not sure if this has been posted elsewhere but I wanted to update that we've recently heard that this trial is on hold. The nurse at NIH we were corresponding with (we'd already had bloodwork done and were preparing to go for our first visit) emailed us with the information. She said the trial was "on hold as we make some updates and actively look for more space for our labs" and that they were uncertain as to when it would reopen.

Has anyone else heard similarly? Any idea what's going on? We were very disappointed to see a potential avenue for treatment closed down.

Re: Update on NIH Trial

Maria....Melinda had mentioned the difficulties with lab space.  Additionally, I was made aware of another problem related to the molecular testing lab, which should resolve soon.  There is a chance that I can address this issue with Dr. Rosenberg, tomorrow.  He will be presenting at the AAADV  meeting (https://www.acceleratingworkshop.org/)  I am participating as well and will keep you posted on the outcome.
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

Update:   I spoke with Dr. Rosenberg.  The hold-up was related to enlarging the old lab.  Their office will re-open in two weeks. 
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

Yes, that is right. Thanks Marion! They are doing everything as fast as they can to get everything and everyone back up and running! I am sure they will contact you Maria as soon as it is a go.

Melinda

Re: Update on NIH Trial

Not sure they will contact me, Melinda.  It might be best for us to reach out to their office in two weeks,  In any case, anyone can get the update.   Whoever knows first, please share with us all. 
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

Oh, ok, great. From the email I was worried it would be postponed for much longer. I'm glad to hear it should be back up and running soon! Thank you for reaching out to find the information.

Re: Update on NIH Trial

You are welcome, dear Maria, please stay in touch.
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

We were informed that as of May 30th the trial is once again open.  Hooray!

Re: Update on NIH Trial

bpbeinlich.....thanks for sharing this good news with us.
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

Dear everyone,

I am long overdue for an update on the clinical trial I have been in at NIH. In the past five years the trial has been amended several times as progress is being made. The last treatment I received was in October of 2013. I received about 126 billion mutation reactive t-cells, and that has been what has fought my cc. I have had a great quality of life, with no side effects after treatment.

The end of August this year, I went for my checkup. My tumors had been looking like they were trending upward for the most part of this year, the growth was minor, but the trend was up. The research team made the decision they wanted to do surgery to remove tumors from my right lung to further study them and see what was going on.

In September, I had a thoracotomy on my right lung. Good news is they were able to remove all remaining tumors in that lung. Bad news is it was one of the toughest procedures I have had to date. They were able to study the tumors, re-sequence them, and decide the next plan of action. I still had the same mutation ERBB2IP, and there was still mutation reactive t-cells present at the tumor site. They also did PD-L1 immunohistochemical staining on my tumors. The tumor cells didn't express PD-L1, but were infiltrated with a lot of macrophages that highly expressed PD-L1. Based on these findings they felt it was plausible that the high expression of PD-L1 in the tumor environment could be actively suppressing the high frequency of PD-1 expressing mutation-reactive T cells that are in my tumors.

Based on these findings, they started treating me with Pembrolizumab on October 13th. After my second dose, I had scans done. The scans showed significant shrinkage to the tumors in my left lung.....which is the only place I have tumors left. I will do two more treatments and repeat the scans at the end of December. I am beyond thrilled with these results.

Just for reference, I wanted to tell you that Pembrolizumab has been added to the trial, but was added after I received my cells, so future patients will be getting it with the initial cell treatment. I am technically on a compassionate use protocol off the original protocol since I am the first to get the Pembrolizumab after cell infusion. (3 years after in my case)

Sorry for the long update and explanation and sorry for the delay in updating this post.

Hugs and prayers,
Melinda