Thursday, December 19, 2013

Running an experiment

Yesterday, we went to DFCI to start "Round 3" of my chemo. This includes lots of blood tests where they make sure that my body can handle the next round and also assess the progress due to the previous round. Fortunately, the results of all the tests so far have been very good and they decided to let me start the next round.

You may recall that one "round" of RVD (ako chemo) is three weeks long. There are two weeks during which I get lots of pills every day plus four infusions on Wednesdays and Saturdays. These are followed by a week of "rest" during which time I take fewer pills - none of them being Chemo drugs.

So, with that out of the way, I would like to talk about a part of this that I find very interesting.

You know that I am a very curious person with particular interest in anything scientific. I love to run experiments. You would think that the doctors would be very specific as to what drugs I take when - and they are for most drugs - especially the chemo drugs. But for some of the others, they are less specific and this is the case with the anti-pain medications.

To be clear, my back has been sore for in several areas since I seemed to strain it back in September. Since then, I have not been able to lift things and even standing and walking around for longish periods can be uncomfortable. Fortunately, I am mostly pain free when sitting and lying down, though the transition from one position can be a problem. Still, I count myself very fortunate because I am really not that uncomfortable. I can't do everything I would like to be able to do, but I can sit in front of the computer in complete comfort. What more could anyone want.

But I am allowed to experiment as much as I want with pain relief. These experiments are made more interesting because I have a vested interest in the results. You would think this would be pretty simple. Change a dosage and see what happens, right? Except that I have 20 different pills sitting around - and a schedule for each day for when I take what. And this schedule changes every day. I keep a 21 column spread sheet to manage all this. Let me give you an example. Here is a photo of the pills for this morning. (I take fewer at lunch and dinner):

About a week ago, I decide that the narcotics were causing more problems than they were worth. (Ok - so  if you must know, we are talking about constipation here). Anyway, I stopped taking them. At first, I noticed no difference (which was what I had expected), but as the days wore on, I felt less and less comfortable every day. Simple, right - except that this was also about the same time the chemo stopped for my "rest". As you can imagine, this was a bit discouraging - like I am supposed to be getting better with all these drugs - not worse.

So, the question is "Why?" Is it because I stopped taking the Narcotics? It is because the disease is still screwing my body up? Is it because I am moving too much and straining myself. It is questions like this that make these "experiments" so interesting.

This decreasing comfort continued until yesterday with one exception. On Monday, I got an infusion of Zometa and I was supposed to take Tylenol to fight fever - except that I accidentally took an Advil or Aleve (I forget which) which is an anti-inflammatory. I felt pretty good that evening, then went back to feeling worse the next day.

Yesterday, when we discussed this with the doctors, they told me that Dexamethazone (one of the chemo drugs) is also an anti-inflammatory drug and maybe the problem was caused by "rest" from chemo. Anyway, today I am back on "dex" and I feel great. I was up walking around most of the day with little difficulty. In fact, I might even be close to my goal of being able to work in the shop (as long as I don't lift more than 5 pounds). So maybe my discomfort has to do with inflammation. We'll see how the next few days go. And maybe I will get my doctors to prescribe a replacement anti-inflammatory drug for the breaks I have coming up from chemo.

Anyway, I think this experimenting stuff is really interesting. I hope that at least you find it "not too boring."

But I wanted to post this while I am still feeling great. Who knows what tomorrow will bring.

By the way, the chemo also causes motor-mouth disease. And since I am sort of a motor mouth even without the chemo, I am sort of running at motor-mouth squared. You can only imagine what poor Barbara is going through. This is a pretty long posting. Maybe my motor-mouth disease extends to blog writing. 

Saturday, December 14, 2013

Pied a Terre

I did not expect to be posting this week because it is a "week off" from chemo - they call it a rest week during which my body is supposed to recover so they can slam me with chemicals again next week. But something has come up that is worth reporting, even though it has little to do with the actual cancer - at least not directly. Plus it is kind of fun.

When I first learned that I had cancer, my first thought was to imagine Barbara living alone in our difficult to maintain house - a mile down the end of the dirt road. Sure we have a lot of great friends, but most are pretty spread out many being 5 - 15 miles away. Fact is that there is not a lot of density of friends here. Then I started to think of what it would be like for ME to be living here alone and that did not sound too great either. Fact is that we have both always assumed that "someday" we would want to establish a "pied-a-terra" closer to Boston and the medical care that is available there. Well, let me tell you that there is nothing quite like a cancer diagnosis to bring focus to this type of issue. This is a particular problem for couples who are childless or for other reasons have nobody they can count on to look after them as their level of senility increases.

So, during our trips to Boston, we have been looking at various options. Our requirements are:
* Comfortable (Luxury) Condo, Co-op or Apartment
* No maintenance responsibilities
* Close to Boston and Boston medical centers - probably west of Boston.
* Large community - lots of people in a relatively small area. Hundreds
* Continuing Care Available. We want a place that we would never need to move from.

Surprisingly, it turns out that there are NOT all that many places that meet these criteria.

But we found one that does. After some searching, we focused on one particular facility that seems to offer what we want. And they even have a unit available that meets our needs. Last week, our offer for one of the units was accepted. Our current plan is to close at the end of February - just in time for us to use it while we are going for the second set of chemo treatments.

Of course, nothing is all that simple. There is the decorating to consider. And it will take quite a bit of decorating. Also, we want to make a few changes to the layout - which we will probably have done over the summer. There will probably be enough here to justify a separate blog. But don't worry. I am not planning that, though I might provide a few updates in this blog.

So, if you want to check the place out, feel free to browse to The floor plan for our unit is similar to the "Hastings" which is shown under "Our Residences" -> "Floor plans". Actually, a "Hastings" unit is what we would have preferred, but our "Ingalls" unit is very similar, except that the second bedroom is 3 feet smaller in our unit.

Just to be clear, we are NOT contemplating a move from New Hampshire at this time. We plan to continue to enjoy our New Hampshire house - except maybe in the winter. It is just that we want to establish ourselves at Fox Hill Village as well.

Sunday, December 8, 2013

My Schedule

Barbara and I made yet another trip to DFCI for infusion #4 of Cycle 2 of my RVD treatment. Cycle 2 ends on Tuesday followed by a rest week. Again, thankfully, side effects so far have been minimal.

The worst part is having to make so many trips to Dana Farber (DFCI) in Boston. Each RVD cycle requires 4 trips into "town".

Not much more to say about this, so I thought I would go over the schedule which has now been pretty much laid out for the next six months.

  • Dec 16 Zometa - short infusion trip to Hookset NH
  • Dec 18 - Dec 31 - RVD Cycle 3
  • Jan 13 - Zometa - short infusion trip to Hookset NH
  • Jan 31 - Feb 10 - Chemo / Prep for Stem Cell Extraction Prep - 2 trips to DFCI plus special pills plus 9 injections that I do myself.
  • Feb 11 - Feb 12 - Actual extraction of stem cells
  • Feb 26 - May 31 - Five more RVD cycles
After that, I go onto some sort of maintenance program which I think is something once a month or so.

All the unscheduled times are rest/recovery periods. 

The stem cell extraction is apparently no picnic, but it is not nearly so bad actual stem cell transfusion which I am avoiding - at least for now. 

My understanding is that even the extraction is likely to cause me to loose my hair. I guess I should be glad that I don't have that much hair to loose. The challenge now is to time my haircuts so that I don't waste one.  I will probably try to do something before Christmas and then let it ride until the extraction. I know that this is important to everyone so I will be sure to keep you informed as to the details. 

Monday, December 2, 2013

More on Clinical Trial

One of our faithful readers commented on the "Clinical Trial" posting with a series of really good questions and comments. So good in fact that I decided to post what he wrote followed by my responses to them. My responses are in italic.


I assume that you do know that lenalidomide is the generic name of Relimid, and that likewise bortezomib is Velcade..

Yup - I did know that.

Is there a reason why your oncologist can’t arrange for the Velcade injection and blood test to be done locally?  I realize that you’re in a clinical trial, but you’d think that they could accept blood shipments from NH and allow for injections by somebody local.  That’s not tricky stuff.

We certainly did ask about getting the Velcade in Laconia or Hookset, but it turns out that it is a requirement of the clinical trial that it all be done at DFCI. And we really think that being in on the clinical trial is a good thing. We figure that we have really top notch doctors trying to prove that our Arm of the clinical trial is the one that keeps people alive the longest.

Regarding the "blood shipments" though, this could be the reason for requiring that it all be done at DFCI. Understand that they draw blood and 20 minutes later the results are available - not only to our doctors, but also to us via something called "Patient Gateway". They want the results before they give me the Velcade. This was especially important back when I was having trouble with my sodium. They actually ran the blood test three times over 2 1/2 hours - thus enabling me to actually get the treatment. Pretty impressive if you ask me. 

The jury is still out on whether stem cell treatment is a good thing or not.  It is extremely dangerous.  Wiping out the immune system is insane (but necessary).  Scientists are unsure whether the stem cells that they are transplanting are 100% good or whether some of them are in fact mutated and spawning cancerous cells.  There is a school of thought that cancers actually originates in stem cells, not just downstream.  Of course, if there were a proven method for cleaning the extracted stem cells, this could lead to a perfect cure.

Yes, the jury is still out on this issue and I am sort of on the jury. This is the whole point of my clinical trial. It is only because the jury is still out that I agreed to be on the trial. That plus the fact that I get the stem cell transplant anyway at the end. I just hope it works as well then as it would after cycle 3. 

It’s curious that in Arm A of the clinical trial, they are harvesting stem cells after 3 cycles, but then continuing to do 5 more.  If each cycle helps clean up the bad stuff, then more cycles should yield cleaner stem cells.  On the other hand, if 3 cycles leads to a minimum, and the next 5 are merely delaying relapse, then maybe that is the best time to harvest.

I had exactly the same question. It turns out that three cycles is when most people have gotten solidly into remission. Apparently, one of the RVD drugs (I have forgotten which) makes the stem cell extraction more difficult and less effective. So it is a balancing act between greater remission and getting a good harvest of stem cells. The reason for the 5 follow-on RVD cycles is to see if 5 RVD cycles is as effective as the stem cell transplant. Apparently, there is some sort of 8 cycle limit due to toxicity of one of the drugs. 

By the way, I incorrectly stated in yesterday's blog that Arm B does stem cell harvest after 2 cycles. That was in error. Arm B does harvest after 3 cycles - same as Arm A. 

Sunday, December 1, 2013

Clinical Trial

At least one reader has asked me for more details regarding the "Clinical Trial" in which I am participating. It is not really all that complicated, so I will try to explain what is going on - first by describing the current "Standard of Care" and then noting how the clinical trial differs from it - not much as you will see.

The "Standard of Care" is what pretty much everyone with MM get for treatment - or at least it is the target of what people should get. My understanding is that it is the role of the oncologist to monitor progress and possibly tune the treatment depending upon how people respond - both in terms of disease control and side effects. The "Standard of Care" has the following components:

  • The foundation and apparently most important component is something called "RVD Therapy" which stands for Revlimid-Velcade-Dexamethazone. To make this more interesting, they are actually giving me Lenalidomide/Bortezomib/Dexamethazone - which they assure me is the same thing. One cycle of treatment takes three weeks with days numbered from 1 to 21. During the cycle, I take the Dex during days 1-14. I take Revlimid on days 1,2,4,5,8,9,11 &12. These two are pills that I take at home. The Velcade goes in via IV (infusion) on days 1,4,8 and 11. For the infusion, we drive to Boston (2-3 hours each way) for a blood test and the infusion. The infusion takes 10 seconds. This is 5 hours of driving for 10 seconds of treatment. Then days 15 to 21 are rest days. In addition to the RVD therapy, I also take a series of a half dozen vitamin supplements (except no vitamins on Velcade days) plus oxycontin for my back pain plus Colace and ducolax for the constipation caused by the oxycontin plus sometimes a couple of other more optional pills.  I have a 21 day spreadsheet / checklist to help with this. Anyway, this RVD therapy is the core of my treatment. There are a whole list of potential side effects, but so far for me at least, these have been pretty minor. 
  • Component #2 is Stem Cell Harvest. For this, they inject me with a rather hefty dose of some other chemo treatment followed by having me give myself shots every day for a couple of weeks. The goal here is to get my body to produce stem cells and then to release them so that they can be harvested at the end of a couple weeks of treatment. This promises to offer more in the way of side effects - from possible nausea to hair loss - not that I have all that much left to lose at this point in my life. But still, this should not be too bad. 
  • Component #3 is is the Autologous Stem Cell transplant. For this, they put you in the hospital while they essentially wipe out all your bone marrow - or at least a certain part of your bone marrow. They then inject you with the harvested stem cells - or actually half of them saving the other half for possible later use. The idea is that these stem cells will take root in your system and replace the bone marrow that was wiped out. During this three weeks, you have essentially no immune system, so they keep you pretty much isolated in the hospital for the three weeks. Apparently, this is the toughest of the therapies. 
So those are the three components no matter whether one is on the clinical trial or not. If you are not on the clinical trial, you get 3 to 6 RVD cycles (normally 3 or 4) followed by stem cell harvest followed by stem cell transplant. 

The clinical trial  has two "Arms" - named Arm A and Arm B. Arm B is very close to the standard of care. Arm B people get 3 cycles of RVD followed by stem cell harvest followed by stem cell transplant followed by two more RVD cycles followed by maintenance doses of Lenalidomide until disease progression.

I have been assigned to Arm A. I get three cycles of RVD followed by stem cell harvest followed by 5 more cycles of RVD followed by maintenance doses of Lenalidomide until disease progression. Note that there is no stem cell transplant on this arm. 

At this point, the clinical trial is over. Apparently, the goal is to see if the RVD treatment without the stem cell transplant holds off disease progression as long as the stem cell transplant treatment. It seems that the transplant itself is the least fun of all the treatments not to mention the expense of three weeks in the hospital. 

I was hoping to be assigned to Arm A - which in fact I have been. You may note that the stem cell transplant is not part of my treatment according to the clinical trial. But when the disease progresses (hopefully years from now), even though I am then off the trial, I can then get the stem cell transplant. To my logical, but medically untrained engineering brain, it seems that the Stem Cell Transplant is sort of like hitting the Reset button. It wipes out your bone marrow and then starts over - with hopefully better bone marrow - that has just been through chemo. I figure that it is better to delay the reset as long as possible. But what do I know.

The oncologists said they thought this was the better track, but when I asked them if they told the "Track B" patients that "Track B" was better, they laughed and refused to answer. But I really do think they are hoping for better results from "Track A". My understanding is that it is very difficult for doctors to avoid influencing outcomes of these clinical trials and I want to be on the side that the doctors are rooting for. . .

So that is the description of the clinical trial. Let me know if you have any questions - either by entering a comment onto the blog or sending me an email directly.

Along with my assignment to Arm A, they also gave me a schedule for my treatment over the next several months. Since this entry is already pretty long, I will save the schedule for another blog entry. Is this the "hook" to get you to read the next blog posting (episode)? If so, it occurs to me that it is a pretty weak hook.