As we look forward to this new year, we have so much more to be happy and hopeful for than we did last year at this time. Last year at this time we were at the end of the Trametinib clinical trial, and we were dealing with the realization that it wasn’t working anymore. In fact, Mike hasn’t had any chemotherapy since February 4th, 2015. I remember Dr. Z asking for a couple weeks to find something else for Mike to try, and the drive home in stunned silence as we realized that there may not be anything else to try. Thankfully, Dr Z found this Keytruda clinical trial for us, and Mike started on it mid March and we have been lucky enough for it to work!
This brings me to treatment 18, and his latest visit at Ohio State. He has gained another 5 pounds in two weeks, and weighed in at 164.7 pounds. He is feeling better and better each day, and aside from the icky side effects like night sweats, chills, pain at the tumor site, and fatigue he is doing better. My mom bought him a professional heating pad for Christmas, and he lays on it when he feels the weakness and chills. In fact, he has been laying on it in the evenings a lot to keep the chills away. What a great gift! If you know anyone that needs one, I am happy to get you the name and information on how to purchase. They are not inexpensive, but Mike was sitting with the heating pad on his hands in the evening before, or on his feet to combat the permanent neuropathy and this heating pad is helping to make him more comfortable!
Cholangiocarcenoma is a brutal cancer. The symptoms mask themselves as digestive issues, and usually by the time of diagnosis people have very little time left to live. I have read statistics that are all over the board, but when I was researching this disease when Mike was diagnosed there was no 5 year survival rate tracked, because no one lived that long! It makes you wish you were dead long before it kills you, and gives the added bonus of your loved ones watching you waste away to nothing. It has been so gratifying to be able to share Mikes treatment with people in groups, support groups, blogs,etc To be able to share hope has galvanized me. It has given me a new purpose, and helped me to deal with my own grief at dealing with Mikes disease and it’s progression.
So many people have asked me what they can do to help us. All we ask is that you share this blog, and the information on immunotherapy with people who may gain comfort, support, or information from it. Share the hope!