Saturday, April 29, 2017

Blog Post 4/29/17

Hello everyone,
Was not able to do a video this time so I am writing this post. It has been a very rough and unexpected few days here in NYC. The trial started as scheduled on Monday. I received 2 chemotherapy agents, fludarabine and cyclophophamide, on Mon, Tues, and Wed.. The purpose of these drugs is two fold. Their main purpose is to prep my body for the T-cell transfusion that will occur Monday 5/1/17. These drugs rid my body of immunosuppressive cells that may inhibit the T-cells actions. Secondly, there is some cytotoxic effects of the chemo on the tumor, meaning it may kill some of the tumor. However this is not the main purpose and is hard to say how much it will effect the tumor load. Chemotherapy went very well until early Wednesday morning. I began to have some nausea and retching. During one of the bouts of retching, I felt something very painful in my right shoulder. This pain soon became excruciating 10/10 pain and no one was sure why. After hours of trying to throw pain medications at it, I was able to get comfortable on a PCA of Fentanyl at a significant dose. The pain was radiating from my right ribs/abdomen to right arm and neck. I was not able to lay flat of on my side without very bad pain. They performed several tests including ultrasounds of my liver and right extremity. Those were negative. But a CT of my chest, abdomen, and pelvis showed I may have a small bleed around the liver. So I likely ruptured something while retching! Ridiculous! This result, along with my dropping hemoglobin led them to transfuse me 2 units of red blood cells as I type now. So thank you to the generous soul who donated blood and is saving my butt today! YOU ROCK! I had another scan tonight to check on the bleed and to get a closer look, a CT Angio of the chest abdomen and pelvis. No results on that yet. My pain is significantly better and I am coming down off of the fentanyl slowly. This crazy "side effect" of what was really a series of unfortunate events, should not delay my t-cell infusion. Worst case scenario they would do a small procedure to stop the bleeding through interventional radiology. They would basically go through a blood vessel and embolize the bleed but that has not been decided yet. It sounds like it wont be needed right now so lets hope for that!

In more positive news, my wife has been here since Wednesday. She showed up at exactly the right time to get me through all of this. Hopefully I will be bouncing back to normal before she leaves and we can have a successful day Monday!

Sorry for the written update, it is difficult to find enough time alone to record sometimes and I have a roommate I need to be respectful of as well. Thanks for all the well wishes, thoughts, and prayers! Will update soon!

Clinical Trial Page : For those of you who wanted more detailed information on my trial.

My Tree



Video Blog 2







Video Blog 1

Video Blog 1