Wednesday, December 4, 2013

NIH Take 2

Monday we went to NIH to discuss my potential enrollment in this new trial. It really sounds like a no brainer as it consists of the standard treatment of Cisplatin and Etoposide, plus the experimental addition of Belinostat. 

It's a Stage 1 trial so there's no control group. My doctor had instructed me to ask what number I am in the study as apparently Stage 1 trials are all about establishing to correct amount to give. Those early in the study get a small dose while those later in the study get a higher dose. The trial includes 39 subjects. I was told that I'm next to last and that they've already determined the right dosage so it sounds like my participation is largely about providing additional data points.

They went over all of the possible side effects, etc, the worst of which seem to accompany the standard drugs. The Belinostat didn't sound like it added too much in the way of severe possibilities. I think that the biggest concern for me is the possibility of additional bleeding, especially a return of the hemopsis that had me hospitalized a few weeks ago. Despite all of the warnings, there really isn't any other option, with the alternative being to do nothing and let this thing win, but I'm going to do whatever it takes to extend the time that I have with my wife and kids. If side effects occur as a results fall this, it will be worth it to endure them if it gives me more time.

The date was set for me to start treatment on Monday, December 9. Because of the nature of this trial, it is an inpatient process. I will have to check into the hospital there Monday evening and stay through Thursday. In thee meantime, they wanted me to get a transfusion to build things up a little before the chemo starts tearing things down. I've been slightly anemic since all do this started but have not been low enough to merit any adjustment until now. Since they know that the chemo will affect. My blood counts, a transfusion is in order to raise them up to start.

On Tuesday I followed up with my oncologist. This was actually my regular monthly checkup and Xgeva injection, but we discussed my plan to start the trial and their request that I get a transfusion before we start on Monday. He ordered the transfusion, wished me luck, and asked me to come back to see him the week after the chemo.

They weren't able to get the transfusion scheduled until the next day, so once again, I had to stay home from work to go to a medical appointment. It was my first opportunity to wear my nre Ronwear jacket that I bought when we scheduled the port install. The jacket worked great with its slit at the top to allow access to the port. It kept me warm and comfortable throughout the 2 hour procedure for which I nearly nodded off in the last half hour.

I was finally able to go in to the office Thursday and Friday. It was good to be out of the house in a non-medical setting and to see my team in person. They're planing to move my team to another office sometime before the end of December so I went ahead and packed things up in case it takes place on a day I am out. Most of what I dug out of that desk went to either the trash or the shredder. It's amazing how much can pileup over the years unnecessarily. Much of it consisted of various documents or notes that I had kept "just in case" I would need it at some future date that never came.

As the day wound down Friday, several people stopped by to wish me luck which meant a lot to me. You spend all this time with those that you work with but never get to close to them out of concern that some HR issue may arise from getting too personal, but it's times like this when those bonds that have built over the years are really exposed. Different people on the team have stepped up of late and taken over some things that I would normally do. It's easy in that situation to both appreciate the help but also feel a little territorial and defensive at the same time. Friday I saw the genuine concern that my team has for my well being and I realized that my concerns were without merit.

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