A quick update from my room at the NIH...
Well in the beginning stereotactic radiation got rid of a small brain lesion, IL-2 cleared up my liver. And surgery got the mass off my back. Then with numerous lesions still in my lungs, I was accepted to the NIH last year and in December I participated in the "Adoptive Cell Therapy" protocol. Initially I had a good response, I think as a whole things went down around 20% over the first few months. As time went by, monthly scans showed the shrinkage was slowing down. And in late August, one had appeared to be growing again. But just one, the rest are still stable. So I was told to come back this week, with the Doctors intentions of a small surgery to remove the defiant one, and hope the rest continue to remain stable. But it turns out the tumor is not in an easily accessible spot as they thought so that idea was scratched and about 5 other options were discussed. It came down to the doctors suggesting I go back to San Diego for some systemic therapy. They suggested Ipilimumab. They said my immune system is still strong and smart enough to keep these things at bay, and hope the ipi will give them a little push to make a difference.
So my time here at the NIH is over for now. Officially signing the papers and checking out. A sad day indeed. I fly out tomorrow morning. And even though this one is getting bigger and I wasn't one of the lucky complete responders. I don't regret coming here at all. They did their best and I'm in better condition than I was a year ago today. Deciding to come here has to be one of the best decisions I've ever made and feel very lucky to have a doctor who encouraged and help get me in. I recommend this place to anyone who has the opportunity.
So as of now, I have an appointment to see my oncologist in San Diego next Thursday. I'm sure he'll have some input, so I'm not sure if Ipilimumab will be the final decision. But it seems to be leaning that way right now.
Has anyone on here had a good response to ipi they'd like to share, whether short term or long term? It's a bit scary going into something new, and sometimes internet statistics can be misleading and discouraging. Hearing a success story or two can make a 1% chance feel like a 100% chance so I'm interested to hear.
Thanks, I hope everyone's doing well and I'll talk to you soon.
And now to one last night in my home away from home. I'm gonna miss this place, and all the staff that took care of me like family and not just a patient.