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.

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. 

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. 

Panobinistat

The latest news is that my oncologists want to try a clinical trial that includes a new - not yet approved - drug called Panobinistat. With luck - a good bit of luck - this will start on Monday. The plan is to give me RVD therapy, which is the "standard of care" for MM and add the Panobinistat on top of that.

The challenge is that one of my numbers is right on the edge of being high enough to qualify for the trial, They ran me through some tests last week and I was just under the threshold to qualify. They came up with the idea of having me eat and exercise just before taking the blood for the test. So, they arranged for a nurse they knew to draw the blood immediately after I had done some sort of a workout. So, Barbara and I had lunch and then we spent about 20 minutes running up and down stairs. Well - to be honest, I only ran for the first couple of minutes and after that I sort of dragged. Barbara ran with me - to give me moral support, but mostly it drove home how out of shape I am.  I then registered for the test and they brought me into an infusion room where the nurse would do the blood draw. After 5 minutes, I got concerned that I was not fresh enough from my workout, so I started doing keep knee bends and leg raises to keep my heart rate up. I got a lot of funny looks; apparently, it is unusual to see people exercising in infusion rooms. Fortunately, I passed the test, but just barely.

I have got to do this again Monday morning - the blood test - not the EKG. Wish me luck.

The other bit of news is that last week when they checked my "vitals", I asked them to also measure my height. They normally do this only the first visit, because this never changes, right? WRONG. It turns out that I am now only 5'8" tall - which is 2 inches shorter than I was last fall and 4 inches shorter than when I was at my peak. This did not seem to particularly concern anyone besides me. Actually, I don't feel any different in my perspective of the world, but I am thinking of getting elevator shoes.

If this keeps up, I will end up looking like one of those cartoon characters that has been crushed by a giant weight and is now only 8" tall and walks around looking like a hat with feet under it. My next drivers license photo will probably include my belt. I have started telling people that I used to be "tall, dark and handsome", but that now I am only "dark and handsome".  

Stem Cell Transplant Cancelled

I was supposed to be starting "mobilization" for my stem cell transplant this week. Unfortunately, yesterday (Tuesday), they informed me that this could not proceed. Apparently, even though most of my numbers were very good, there were a couple that indicated that my cancer was still too active. This indicates that while the protocol I was on was working, it was not working quite well enough. They did not seem to think that a few more cycles of this protocol would make any difference.

In other words, my cancer is responding to the treatment, but it is not going into remission as hoped. The good news is that there does not seem to have been much if any deterioration of my bones since the last bone scan in January and, as I said above, most of my numbers look very good.

So - it appears that the next thing to try is a "clinical trial". We are currently looking at three different ones and we'll probably select one of these next week.

There is also a good chance that we will also try the kyphoplasty to "buck up" my spine and hopefully get rid of some relatively minor discomfort in my back. We had considered doing this back in March, but did not want to get in the way of the chemo or radiation therapy I was getting. This summer might be a better time for this.

Meanwhile, I continue to feel pretty good. While there are a few days when I am very tired, there are other days when I have a lot of energy and get quite a bit done.

Last weekend, we went to Barbara's 50th high school reunion. Barbara and a real blast and it was fun for me as well. I was amazed at how young and active everyone looked. Then I realized that we are used to the people at Fox Hill Village where the average age is about 15 years older. Of course Barbara's classmates looked young by comparison. 

Ready for SST ?

On Wednesday, we met with the Dana-Farber Oncologists. They went over the lab results - which continue to look very good and they have decided that it is time for my stem cell transplant (SST). The only problem is scheduling. They do not want a gap between the end of chemotherapy and Stem Cell Harvest, because they don't want to give the cancer any more time than necessary to recover prior to harvesting stem cells.

So - on Thursday, I called the scheduling nurse to coordinate. She told me that it could be August before they can fit me into their schedule and that this would not be a problem since they could simply continue the chemo while I am waiting for a slot. You can imagine how thrilled I was with the opportunity for three rounds (9 weeks) of unnecessary chemo. I asked her to please make sure that this was OK with the oncologists.

This morning (Friday), I received an email from a different scheduling nurse setting up a whole bunch of pre-transplant tests in about a week, so I called her. She gave me the impression that the other nurse had had a change of heart as to when I would get the transplant (after checking with the oncologists?). So possibly, I will be starting the transplant process sooner rather than later. Apparently, they want to surprise me.

The scheduling nurse who told me that I might get my transplant in August is apparently not in today, so I will hopefully find out more on Monday. Either way, all the news at this point is good. At least they are highly encouraged by the numbers.

Meanwhile, Barbara and I have been in Westwood for the last few days. When people "leave" Fox Hill Village, they are typically not in a position to take their furniture with them. Some is taken by relatives, but other furniture is donated to FHV and placed in a basement storage area where residents can purchase it - sort of like a continuing yard sale. Barbara watches this area carefully and recently discovered a very nice dining room set - which has now been purchased and moved into our apartment. Our place actually now looks lived in. I am not completely without sin in this regard because I found a very nice marble topped coffee table which is now in front of the couch in my office.

Meanwhile, I continue to feel pretty good and apparently, I look pretty good as well. A friend who just returned from Florida told me that I did not look nearly as bad as he expected me to. So I guess that is more good news. 

Spending time in the Workshop

We are just wrapping up "Chemo Round 5" of this regimen and I am once again on a "break week" which means that we only had to go to Hookset once this week. It also means that we are spending the week in Meredith rather than doing our usual Meredith to Westwood on Monday and Westwood to Meredith on Thursday - both with chemo stops in Hookset. We plan to do that for the next couple of weeks.

We met with the Hookset oncologist yesterday and he says I am doing very well. Side effects of the chemo are minimal and the numbers look good. As of now, the current plan is for me to get three more cycles (3 weeks each) of chemo and then to stop the chemo to see if I have managed to get myself into remission. Alternatively, if the numbers stabilize, they might skip the last cycle or two. Meanwhile, Cycle 6 will start this coming Monday. I can hardly wait.

In the meantime, I am happy to report that I am feeling pretty good - a bit better than at the same point in the last cycle. I still can't lift everything that tempts me, and my back is a bit stiff, but I did spend some time on the tractor a couple of days ago. I can turn around and look behind me and that is a big improvement. I have also been spending a fair amount of time in my workshop. I finished the desk I was building for use at Fox Hill Village and we brought it down to FHV during our last visit. It is great to have a reasonable place to sit and work at the computer. Here is a picture of the desk

I also have a garden plot - OOPS - we are NOT supposed to call them "plots". I meant "garden bed". It is about 4 x 15 feet and I have managed to plant a few rows of lettuce, chard, beets and turnips. Almost everyone else is planting flowers. I hope the veggies don't feel out of place. I understand that rabbits get into the garden area and eat everything anyway. I am also hoping to plant a garden area here in Meredith as well.

We also now have a pet duck. Well - sort of. Last year, a mother duck set up a nest in our bushes and eventually managed to hatch 4 little ducklings. Today we noticed that she is back, having set up her nest under a bush in our front yard. There were 11 eggs in there today.

Meanwhile, Barbara has hired a decorator for FHV. He and his assistant came up to Meredith to "see how we live" and to get ideas of what we might like at Fox Hill Village. Barbara seems to have this well under control and I try to do my part by staying out of the way.

There is one other thing to celebrate: The fact that I can celebrate. Yes - that's right. I can have a glass of wine with dinner this week if I want, since I am not on chemo (after Monday). So, the question is,
How shall I celebrate?" I know - I think I will have a glass of wine!!!