Saturday, June 28, 2014


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".  

Wednesday, June 18, 2014

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.