Tuesday, July 29, 2014

First Cycle of Clinical Trial

Last week, we completed the first cycle of the "Clinical Trial". Mostly, this is the same chemo we tried during the first regimen, but with the addition of a new drug called Panopinostat. Apparently, this has shown good results, but is not yet clinically approved. The goal is still to get me to Stem Cell Transplant.

The results after the first cycle were reasonable - about like when the results from the first regimen, though this time we are starting from lower marker levels. What matters most here is not how fast we drive the numbers down, but rather that they stay down at the end long enough to make the Transplant happen. We won't know this until the end of the regimen.

Meanwhile, I continue to feel pretty good. It is interesting that everyone seems to think that the chemo will wipe me out, but the reality is that I usually feel better during the actual chemo and I can get more tired during the "rest periods". I think it is because the chemo includes a drug called Dexamethasone (Dex) which is a corticosteroid. I think this is the drug that induces "motor mouth syndrome" and cuts down the brain to mouth barrier. For me, it feels like a sort of caffeine high. I am not sure how Barbara feels about it.

My side effects during the first cycle were minimal. I did get some rather unpleasant lower leg and foot cramps which affected my sleeping for a few nights, but they did not last too long. The funniest side effect was hiccups which occurred during the first cycle. These lasted for hours after dinner on both chemo days of the first week. Fortunately they were fairly gentle hiccups and went away as soon as I rolled over to go to sleep.

Last Friday, we had friends visiting, so we went to Battleship Cove for the day. Unfortunately, it was "Free Friday" which meant that 75 or 80% of all the children in eastern Mass were there running around, screaming, and blocking passageways. Maybe this is like the confusion of combat.

I was totally wiped out on Saturday - whether it was from all the activity the day before or because of the chemo or because of it not being a "Dex Day". Who knows? I ended up taking a total of four naps during the day Saturday. In contrast, Sunday, I was quite lively  and felt great all day.

I was all set to publish this last night, but ran into a slight problem. Lightening struck very close to our house and took the power out. My first thought was "Glad we have that generator".  But apparently, it took the generator out too. Also, the phone and internet. And my large computer monitor. And also Barbara's computer. And probably a lot of other stuff too that we have not found yet. We just drove down to Fox Hill Village and are getting ready for another week of chemo, but this will give us projects to look forward to when we get back to New Hampshire.

Friday, July 4, 2014

Happy Independence Day

Happy Rainy 4th of July.

We did not plan to be here at Fox Hill Village today. We had an appointment at Dana Farber yesterday (late) and our plan was to come back to FHV for dinner and get an early start back to NH in the morning. This was not to be.

The Clinical Study people decided that since DFCI was closed on Friday, we have to go in on Saturday. Fortunately, we have a very early appointment (7:30 UGHhhh). They will give me a series of 3 EKGs over 10 minutes, then feed me my Panobinostat, wait 3 hours and then give me another 3 EKGs. Then we get to drive to NH. Fortunately, traffic should not be too bad.

Then we will return for more appointments on Monday.

New Hampshire is really beautiful at this time of year. At least that's what they tell us. Hopefully, we will be able to spend more time there after next week.

I should not complain. The doctor we had in Hookset was very good, but we really like the Dana Farber doctors a LOT better - mostly because they tell us that I can have wine with dinner even with the chemo. This is clearly a superior protocol.

I think this is our longest single stay at Fox Hill Village so far. My little garden area is doing well. This morning (before the rain started), I went out, did some weeding and harvested some arugula, lettuce and three giant turnips.

The good part about being here is that FHV put on a great July 4 lobster feast which Barbara and I enjoyed greatly. And we did not have to step foot outside in the rain to enjoy it. 

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.