Tell me again about Immunotherapy clinical trials?

When people ask me about the immunotherapy drug that Mike is on I struggle with how to explain it. Sometimes I get too technical, and I see their eyes glaze over,and sometimes even I can’t explain it.

I think I finally can explain it so that we can all understand it. First of all, Doctors have struggled with the question of why cancer seems to evade the bodies immune system. It’s like the cancer cells develop a “secret handshake” that persuade the bodies T-Cells not to attack.
In 1992,the Japanese discovered a molecule in T-Cells that are a part of this secret handshake they called PD1. PD1 stands for Programmed Death.
For those who are PD1 positive the immunotherapy drug works really well. The drug attaches itself to the T-Cells,blocking the cancers ability to hide. This stimulates the bodies own immune system to fight the cancer.

There are several different types of trials being conducted with immunotherapy drugs.The one Mike is on is Keytruda,MK-3475, or pembrolizumab.There are several others that work in the same way,as well as some that are combined with other drugs.

Clinical Trials are life savers for some, and devastating for others. Mike was in another trial before this one, and it worked for 5 months. The percentage of people that actually participate in clinical trials is really low. I have seen numbers reported to be as low as 3%. I used to not be able to understand why you wouldn’t do a trial if you had any chance that it would save your life. I understand now. Sometimes it is the quality of life that people consider when making these painful decisions. We all have to ask ourselves at what cost do we want to live? It has come up a couple of times this year, and each time I begged Mike to hang on a minute at a time. Thankfully, the moments passed, and he hung on.

If the fear of the potential side effects from the treatment don’t scare you away, the expenses may. Mike has the best health insurance money can buy, and we still have out of pocket expenses in the $10,000 a year range related to his medical care. After we pay the out of pocket insurance max for the year, which we make payments on, we have the expenses related to the travel every two weeks. The hotel rooms, the time off of work, the wear and tear on our vehicles,fuel expenses..It is almost unfathomable that we can still buy groceries!

Would we do it again? Absolutely. The chance of a cure, the hope for a future.. It makes it all worth it to me. You have to be brave, to go through what Mike has gone through to live. When he went to the U of M doctor this week, he was literally amazed at the improvement in Mikes condition in just under 2 weeks. I tell Mike all the time that he is a real man, among men. When he was in the depths of misery from the ulceric bleeding tumor, he told me that he finally understood what I meant. The fight to keep going for me and the kids, the fight through the pain with no end in sight, the struggles to find joy in a life filled with so much misery gets hard. I’ll take my man in this fight any and everyday…all 146 pounds of him.

Anne