Tuesday, July 1, 2014

I passed !

You may recall from my last post that my getting into my clinical trial rested on my "neutrophils" numbers not being high enough.. During my first try last week I flunked, but it was sort of a "D+", so they figured that if I did some exercise and got my heart rate up, that maybe I could get that up to a "C-" or so - jut enough to pass. So I ran up and down stairs for 20 minutes and they redrew the blood for the test and I just barely passed.

But I still had to pass on Monday (yesterday). The nurse in charge of the clinical trial said that she was "very concerned".

Being a "belts and suspenders" kind of guy, I started working on this on Sunday. I did a fast mile and a half walk. Then, yesterday morning, I got up early and went to the gym at FHV where I did a workout. When we got to DFCI, they told us the wait for the blood tests could be as much as a half hour. The problem is that I wanted to get the blood drawn immediately after exercising so I got them to give me the best estimate possible. I then ran up and down 15 flights of stairs, timing myself to get back just a couple minutes before the test. During that 4 minute wait, I stood in the waiting room doing deep knee bends and leg raises. Note that there were about 50 people in the waiting room watching me, but nobody paid any attention; they are used to seeing everything in that waiting room.

Anyway, I passed the test with about a 50% margin. HOORAY !!

So they gave me a whole bunch of drugs yesterday - including Dexamethasone which is my favorite It reduces inflammation (and discomfort) and also makes me more lively. It is sort of like a super caffeine high. This is great for me, but a bit tough on Barbara.

The best part of this is that we are now close to a schedule that should go for several months. It is good to be able to plan and schedule things. This chemo runs in 21 day cycles with two weeks of chemo followed by one week of "rest". We will probably come to Fox Hill for a few days during the chemo weeks and then stay in NH on "rest" weeks.

The next challenge is a special EKG. The clinical trial protocol calls for a series of 3 EKGs immediately before taking the Panobinostat followed by a three hour wait and then 3 more EKSs. This is to be done on my first and third ingestions. The problem is that DFCI is closed on Friday when I should take my third Panobinostat. They are talking about having us come in on Saturday which we are not really thrilled about. I have explained to them that I am an engineer and that if they lend us the machine, we will obtain the needed EKGs on Friday. Anyone taking bets as to how this will go over?  We have also offered a couple of other suggestions. Should be interesting. 

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