Part of the reason they decided to change my treatment plan was because we are only treating one tumor with this therapy. This tumor is larger (about 7cm) and is in my mediastinum, or the cavity around my heart. The problem is that I still have several other tumors in my right lung cavity. These tumors seem to be stable right now, but doing proton therapy for 6-8 weeks would limit our ability to also do other systemic treatments to help treat those tumors as well. The hope is that we get a good response from proton therapy on this larger tumor and then move on to some other systemic treatment. This may be some chemotherapy that I would be able to receive back home. We have also discussed the possibility of entering another clinical trial down at MSK that would involve using two monoclonal antibody drugs. We have not decided which course to take yet. A lot will depend on how well I respond to the proton therapy and what my surveillance CT scans look like going forward. I will have another CT scan tomorrow to see what the rest of my disease status looks like. This scan will be about 90 days from my T-cell infusion.
So far, treatment has been uneventful, which is good! I finished day 2 of 5 today. I am having a little fatigue and a raspy voice tonight, but otherwise don't notice a thing. Treatment is painless while it is happening. The picture above describes how the proton beam works. It is quite amazing knowing that all of this equipment and technology is behind this little nozzle that I see in the treatment room. This is the third time I have had radiation treatment of any kind. Once on my left foot and previously in about the same spot they are hitting now. I had some complications with radiation on my chest the last time, developing fluid around my lung that I needed to have drained several times. I am obviously hoping that the specificity of the proton therapy helps us avoid some of these complications. My esophagus is probably my biggest concern. Any damage to my esophagus can cause a lot of problems including bleeding, strictures, or tears. I was luck to avoid those issues last time and hope that continues! Not having my wife here with me to tell me I need to go to the hospital, I need to tell myself to be extra vigilant! So far the hardest part of this has been being away from home and my family. I miss them very much. Facetime with my daughter just is not the same as being there. Thankfully, 8 days will be better than 6-8 weeks!
I want to say thank you again to every single person that donated to us over the past week. I was so moved by the outpouring of support. We received support from people we do not even know. I don't know what I have done in my life to deserve the support I have. I hope you all know how grateful we are to have your support. We raised more than double our goal of $6000, which was based on the cost of this treatment and to pay for some of the anticipated 6 week stay. Since treatment was shortened to one week, I was able to pay for this treatment and all travel expenses. All of the money left over will be saved for future treatments and travel to NYC. I am also incredibly grateful to those at Roswell Park Cancer Institute where I work. Your support during my absences has been incredible. Whether you have donated time off to me, sent me an email of encouragement, or covered my clinics while I was away from treatment,I can't thank you enough!
I will try to update in a couple days depending on how things go. Hopefully it can be a short uneventful update if all goes well. Thanks again for following along and for all of your support.
