Update on NIH Trial
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Dear Ellen,
That is awesome! You are getting two great trials! Please keep us posted on both. Did you have any markers that indicated the use of Pembrolizumab? Looking forward to hearing more great results, maybe we could meet up at NIH sometime!
MelindaHi,
I thought I would let folks know that I am now in this NIH trial as well. In July I went to Bethesda for final screening and was accepted into the trial. Two weeks later I went back for surgery to remove 3 tumors from my right lung. I’m now waiting for my cells to grow (the protocol is now to grow them for 3-4 months), but I’ve been told they are doing nicely.
In the mean time I’ve started on the Pembrolizumab (Keytruda) plus GM-CSF clinical trail back home at UCSF. I’ll get scans in 2 months to see if it’s doing anything good for me. I’ll stay on this trial as long as it helps, but if/when it doesn’t, I’ll plan on going back to NIH for the cell infusion. They say they can freeze my cells in the mean time.
Ellen
Dear Melinda-
Thank you for the update- you have been in my thoughts and prayers.
Best part is great quality of life- YEAH!!!!!!!!!!
Love and hugs,
CatherineDear all,
I wanted to do a recap of the past year at NIH….I continued with Pembrolizumab for 8 treatments, the last one was in March 2017. It worked to open the window for my mutation reactive t-cells to see the cancer and shrink it again. I still have some spots left in my lungs….which have remained unchanged since March. I have had no other treatments since Pembrolizumab. The plan for now is to just watch. As long as they are not growing there is nothing to worry about. My last check up was last week and all is still good! My quality of life is great.Melinda
This is the link to Melinda’s trial – NIH – Steve Rosenberg, MD
https://clinicaltrials.gov/ct2/show/NCT01174121This is the link to Melinda’s trial – NIH – Steve Rosenberg, MD
https://clinicaltrials.gov/ct2/show/NCT01174121Dear 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,
MelindaOh, 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.
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
MarionYes, 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
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