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!!!

Staying the Course

It has been a few weeks since the last posting and I thought I would update the blog to let you all know what is happening.

The snow is almost completely gone and the lake is free of ice. Last week, our friend Jerry managed to gather up 23 gallons of maple sap for us and I am boiling it down now. We should get  a couple more quarts of syrup, but that will be the last of it. Then it will be time to clean up the mess all this has made.

Mostly, I am feeling pretty good lately - especially my back and ribs - which probably means that the bones are healing a bit. I am still not allowed to lift heavy things which is frustrating, and I am not yet chainsaw certified, but this is progress. I have many small side-effects from the chemo, but none are too bad and they are too numerous and boring to detail. I do get tired easily and seem to need lots of sleep. My "brain to mouth barrier" (never strong to begin with) continues to weaken. Also, I am VERY sensitive to the sun. I burn easily; it takes a long time to heal and does not turn into a tan. And this is April. July should be interesting.

I am on a "break week" from chemo which means that I only had chemo on Monday this week. We had a meeting with the Dana Farber oncologists on Wednesday. This included another complete set of blood tests - even though I had had a set with my Hookset oncologist on Monday. Fortunately, all the numbers looked pretty good - including the IGg which is the one that has been giving us trouble, so that is good news. The plan is to continue with chemo cycles - which means two weeks of chemo followed by a break week. For us this translates to two weeks where we spend Monday afternoon to Thursday morning at "Fox Hill Village" in Westwood with stops for chemo in Hookset on the way from Meredith and back. On the "rest week" we have chemo only on Monday, so we will most likely return to Meredith and skip Westwood on that week.

Fox Hill Village is interesting. They have a group picture puzzle set up on each floor. I already got chastised for "being too good at puzzle making". Barbara is starting a Mah Jongg group. She has also hired a designer/decorator for the apartment. I don't see the point. We already have a TV, a bed and Internet access. What more do we need? Perhaps men are not meant to understand these things.

One really good bit of news: I asked my oncologist if it would be OK for me to have a glass of wine on days when I am not getting chemo. He did not see any problem as long as I do not drink on chemo days or the day before or the day after. You can imagine how excited I was to hear that. But when I worked out my actual drinking days, it comes to 4 days during every 21 day cycle. Hey - its better than nothing. I prefer to think of the glass (or in this case, the "wine glass") as being "half full" rather than "half empty". . 

Sugaring Continues

Barbara and I are back in Meredith after a few days at "Fox Down Abbey". We had two rounds of chemo in Hookset this week - one on Monday and then again today on the way back. This is what we expect will the pattern for a while. In general we have two "chemo" weeks followed by one "rest" week. During each "chemo week" we will have chemo on Monday and Thursday - and go to Westwood for the days in between. On "rest weeks", we will go to Hookset on Monday and then come back to Meredith. This week and next week are chemo weeks.

So far, the numbers from the blood tests look pretty good, so it seems like the myeloma is responding to the chemo - at least for the time being. At this point, this is all we can ask for. In a couple or few months, they will see what happens if they stop the chemo. If the disease has been driven into "remission", the numbers will stay good for a while even without the chemo. If this happens, they will do an autologous stem cell transplant. That is what the doctors are "keeping their fingers crossed" for. Us too.

Meanwhile, Barbara and I have been talking to designer / decorators for the place in Westwood. We are still pretty much camping there, but yesterday marked a transition when we had a proper bed delivered. The sleeper sofa that we had purchased for the unit was quite comfortable, but the bed is better. So, we now have a couch, a bed and a 65" 3D TV connected to the Internet. What else could we ask for?

Meanwhile, I have been feeling pretty good. I am still a member of Meredith's Zoning Board of Adjustment and attended the monthly meeting tonight. I am spending time in the workshop building a desk for use in Westwood, but I have a long way to go on that. But most important is that it is Sugaring Season here in New Hampshire. Anyone in the area will tell you that this is very high priority.

To understand what home sugaring is all about, I recommend listening to Funny Sugaring Poem. It is 13 minutes long, but really funny.

Fortunately, I am happy to report that my Maple Syrup Evaporator Invention has been working quite well. Barbara says it looks like something that Rube Goldberg would come up with if he were trying to cook soup in a toilet. But I don't care - it works extremely well. I plan to share the design with other Maple Syrup makers and I have posted a detailed description at Maple Syrup Evaporator.  Here is a photo. When the sap level gets low, the copper ball drops down and pulls down on the lever. The lever lifts up on a switch (that you can barely see in the photo) and turns on power to the gray outlet box. To the right of the photo (not shown), there is a sap bucket with a small pump in it. The pump is plugged into the outlet box, so it pumps sap through the light green tube into the sap boiler until the ball floats up and turns the switch and pump off.

There is still quite a bit of snow in the woods and I have needed a bit of help in hauling the sap out of there. My friend Jerry has been great about going up there and bringing the sap out. Barbara has also gone in there with me and hauled sap out. When I go up to the "Sugarbush", I have to wear snow shoes to keep from punching through the deep snow and I have to limit what I carry to a few gallons at a time. I think sugaring season might be almost done and it looks like we will end up with about a gallon and a half of syrup - which means we will have had to haul and boil off about 60+ gallons of sap.

So that is the summary of how things are going here. We are tired from all the driving, but we are holding up well enough and we are certainly ready for Spring.

Spring Arrives!

Spring arrived today. You can tell by looking out our kitchen window and noting that there is only about a foot and a half of snow on our back deck.

I have to apologize for not updating the blog sooner, but it is the fault of my brother and his family. Well - anyway - that is my excuse and I am sticking to it. They came up for a visit for a few days last week and I was enjoying their visit so much that I could not tear myself away from their company long enough to work on the blog. So, it wasn't my fault.

Of course, they left five days ago, but I was tired from their visit and the radiation treatment. Anyway, I am working on it now - better late than never.

My radiation therapy finished up last Friday. That was 10 workdays in a row of Barbara driving me to Concord (1 hr each way) for about 10 seconds of radiation each trip. For the most part the radiation itself was quite painless, but I  got very tired after some of the treatments - and not at all after others. I have no idea why. The say the tiredness continues for two to six weeks after the end of the treatment. I was very tired yesterday, but OK today.

The other side effect was a sore esophagus. Really. The radiation apparently causes something like a sunburn there, so swallowing has been a bit of an issue. I have had to take really small bites totally chewed and eaten very slowly. Hot or cold was also a problem. One morning it took me a full half hour to eat a bowl of cereal. This seems to be pretty much over with now, but for a few days, I would also hiccup after each swallow. It really wasn't that bad in the grand scheme of things.  Try to think of it as a comedy skit where the guy does a hiccup after each bite.

They did not do the khphoplasty as planned during the radiation cycle. (The procedure where the inject cement into my back.)  During the radiation, I got a very bad cold along with some small infections on my hand, so they decided to delay the kyphoplasty. There is some chance that the radiation will help enough that the kyphoplasty will not be needed - at least not soon - and there does not seem to be any hurry on this.

Which brings us to the status of my chemotherapy. You may recall that the first regime that they tried on me last fall did not bring the cancer into remission, so they are trying an alternate approach. After the first cycle on the alternate approach one of the key indicators was way down indicating that the new approach was working very well. This was great and very welcome news. I then completed another cycle and then took a short break for the radiation therapy. After this second cycle (last Monday), the key indicator (Igg) was up slightly - while they were hoping that it would go down more. This is not good. However, the lead oncologist is still hopeful that the current regime will work if given a few more cycles. He noted that all my other numbers are still very good and that they had reduced some of the dosages during the second cycle due to my white blood cell count. Going forward, they will use a different technique to manage white blood cell levels. So we will keep our fingers crossed that the current regime will work if given a chance.

Barbara continues to be my "Rock of Gibraltar" through all this - insisting on going with me to all treatments and doctor visits and generally helping me with all the things that I have trouble doing since the onset of my disease. It used to be that I was the one to lift anything heavy and now that I am not allowed to do so, I have to ask her to lift anything over about 20 pounds. It is very easy in all this to forget that the disease victim is not the only one who suffers from the disease; it totally changes the life of the spouse as well.

Meanwhile - on the non-Cancer front, we spent the last few days in Westwood (at "Foxdown Abbey"). We are far from moved in there, since we have very little in the way of actual furniture. On Wednesday, we met with to a designer. We are still trying to learn our way around, but so far, we really like it there. Everyone is really nice and the food is good - which is important to me - even if it did make me hiccup.

And here in New Hampshire, my friend Jerry helped me tap some maple trees on my land last week and my brother and his family helped me tap some more when they were here. We now have about 15 gallons of sap which I am hoping to start boiling down tomorrow, I have invented a special maple sap evaporator system which I need to finish building. I have not tested it, but I am certain that it will all work flawlessly the first time I try it. I will tell you more about this in a later posting if it does not burn down my workshop.