"Hi Jim,
I ended up going to NIH and going through the TIL trial. Everything worked out well during the trial... no adverse reaction to chemo or IL2. I had 10 doses with no problem. They gave me back 76 billion of my killer CD-8s and I went home 2 1/2 weeks later. The only side effect was lingering low red blood cell count. I received 2 transfusions and am now my marrow seems to be on the mend.
My first trip back to NIH was mixed. The tumors were slightly bigger, but there was a lot of hemoraging and necrosis which could account for the increase due to edema. We would wait another month.
Month two. We just returned and two in my liver were larger, but everything else was static. But, this time they did a brain MRI and found a 7mm met at the top of my cerebellum. Looking back to the brain MRI before the trial our doc thinks it may have been there only too small to be noticed. During late Dec./early Jan. my tumors grew at a rapid pace and we figure this may be when the growth occurred. Anyway, NIH will not be following me anymore due to that met. I feel like the TIL trial is still working... everyone reacts differently and late responses seem more durable than early response.
So, we are looking for the next available trial. I'm trying to get into a MDX CTLA-4 blockade trial at Vanderbilt which specifically requires a brain met. Since mine is small and not causing any symptoms currently I think this might be a good path. It would at least provide a good following of my brain with scans... so bothersome with insurance. If there is any serious growth I can still go for the cyber-knife. I was avoiding cyber-knife since it requires a major dose of steroids and would effectively negate any positive effect of my TIL trial.
I would be greatly interested in what you think of our plan and if you know of anything else out there. Do you know anyone who has been successful with MDX?
Our NIH doc seems to think that TIL patients have a better response with this drug(CTLA-4) "possibly" than the general population."
As you see, my Research seems to hold water.
Jimmy
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