Th’argghhhs a Mutiny on The Ship

The past five Tuesdays have been infusion days for the immunotherapy trial that I am on. Ann Saucier Brown and I headed up to UNC on Monday for a couple of tests prior to my Tuesday infusion. One of those tests was an eye exam, as one of the side effects of the trial drug is eye damage.

The result is my body is attacking my eyes - mutiny!!

The goal for immunotherapy is to teach your body to use its own immune system, specifically white blood cells and T-cells, to search for and kill cancer. Sometimes the body gets confused, and sends white blood cells to other areas of the body. For me, it was my eyes. The reaction was severe enough that I am being pulled from the trial to save my vision, if I kept getting the trial drug I could have possibly gone blind. A couple weeks of prescription eye drops, and no more infusions of the trial drug, should remedy the situation.

So where does this leave me now? I have been pulled from the trial. The only thing that is changing in my treatment plan from the trial plan is not receiving the trial drug yesterday. The next step of the trial was body scans and tumor review on 3/16/20. That is still the plan; I'm just missing a dose of the trial drug. I have received four doses of the trial drug and two doses of Keytruda. My doctor believes this is plenty enough to "start the fire" for an immune reaction, or not....and now we wait to see if the body wants to fight cancer. On 3/16 if we believe the immune system is fighting I will get another infusion of Keytruda, and we will ride it out until week 9. This is where most medical research shows there is a definitive response or not to immunotherapy. If the 3/16 scans show bad news, we regroup, make a new plan, and fight like hell.

The white blood cells in my eyes could be good sign. It could mean my body is sending out these fighters to look for cancer all over my body, including my eyes. Or it could mean my body can't figure out how to use the drugs and is sending white blood cells all over because it doesn't know what to do.

We are going to use the next two weeks to relax and live a little. More time at home, more time to rest, more time to pay attention to the people and things I love, and more time to spoil the boys a little bit.

The past four weeks of treatment I have really learned what it means to fight cancer - a lot of naps and a lot of relying on my support team. So thank you to all my immediate family that has literally carried me through the first four weeks of treatment and pushed me to keep fighting on the days where I felt horrible from the drugs; specifically Ann. I could not fight without her. Thank you to all of you who have become part of "WE." The messages, texts, calls, and visits give me a reason to keep chugging along.

I'll keep you up-to-date on what the next steps are after my scans and meeting with my Dr. on 3/16. Until then, we are going to work on beating cancer by living the best life we can.

Thank you!

-Ben