A Significant Setback

You can't expect a cancer-blog to always be reporting good news and I am very sorry that today's report will not be humorous or presenting good progress.

On Wednesday (1/22), I went to Boston for a day of tests to confirm my readiness for stem cell harvest. I had been looking at this as a formality of sorts since I had been told that the therapy I have been getting ("RVD") was nearly 100% effective in bringing MM into remission. Unfortunately, I flunked the test. My MM may have been knocked back by "RVD", but it appears that the disease did not stay knocked down for long. In addition to bad blood chemistry, there has also been additional bone deterioration in my spine.

Needless to say, this is a fairly major setback.

The doctors did not sound all that dismayed by this news. (I think they are trained to never sound dismayed.) Their attitude was, "Well - this happens sometimes and there are other treatments we can try that are usually highly effective under these conditions." I am sure what they are telling us is factually true, but still this is a big disappointment. I had always figured we would get to the point where "RVD" would stop being effective, but I had hoped that time would be as much as 3 - 10 years in the future and that in the meantime, I would be able to hike and chop wood and ski and lead a pretty normal life.

This also means that I have been kicked off the Clinical Trial. The good news is that while I will keep my Dana Farber oncologists, I can get most of my chemo in Hookset, NH - which is one hour from Meredith. We are not sure what this means relative to the Westboro place (Foxdown Abbey), but we plan to go ahead with the purchase. Hookset is almost exactly half-way in between the two towns; perhaps we will still spend half time in each place.

On Wednesday and Thursday, I was pretty depressed about this development, but I am back to taking things one day at a time. This development probably means that my survival prospects are not as good as they had been, but dwelling on that will not help matters. I am trying to get the most out of each day.

At this point, I have been off of chemo for three weeks and the chemo side effects are pretty much gone. It is great to have my sense of taste back and to be able to enjoy my food for a while. It is also good to have my brain back to normal - for me that is. I had not realized how much I had been affected with "motor mouth syndrome" (Chemo Brain?).  A holiday card that I had sent came back as undeliverable and I could see from the address that I had had a lot of difficulty actually hand writing it.

On the other hand, I think that the cancer has been doing some additional bone damage as it has come back. I have a low-grade pain in my back that as been increasing over the last few weeks and another pain in the lower ribs on my right side. Neither is very bad and I am hoping to knock that down with chemo that starts next week. These get worse as the day goes on and they limit what and how much I can do physically. It does bother me a bit trying to sleep, since it hurts more when I am lying down than when I am sitting. The good news is that I can get a reasonably good night's sleep by carefully finding a position that is pain free. And I can do this without taking any medication. I really am quite content as long as I can do that.

So that is the summary of where things are. I am sorry I can't report more positive developments, but things are what they are and I promised to keep you informed, so there it is. I will let you know more as I know more. 

Mid-Break Report

I have been on break from Chemo for the past two weeks and I thought I would post a "mid break" update - even though there is not much new to report. I guess that's good news.

I am feeling pretty good and my energy level is better than is has been. A couple of days ago, I lit a fire in the wood-stove to heat up our detached garage/workshop and spent a couple of hours with my tractor partner putting chains on the tractor. He did most of the heavy lifting, but I was able to help a good bit and thus avoid feeling totally helpless.

As I have said previously, I have not suffered terrible side-effects from my chemo treatments for which I am grateful. But still, there have been a few. And as s a naturally curious person, these have been very interesting to me.

The most interesting side-effect has been the loss of part of my sense of taste - but only part. I have a lot of trouble tasting salt. I had no idea how important salt is to the taste of almost everything we eat. I first noticed it when I was having a slice of toast and butter. It sure looked good, but it tasted like toast and lard. I find myself looking at a luscious meal and thinking about how great it is going to taste. You don't forget what stuff should taste like and you really anticipate what it is going to taste like and the disappointment is amazing. When we go out to eat and the server asks, "How is everything?", I am thinking - "Why are you asking ME? How would I know?" But I just smile and say, "Great!". It is also difficult when I am cooking and the recipe says, "Season to taste". Like - how am I supposed to do that?

I'm not complaining, mind you. After two weeks, I think the sense of taste is slowly coming back. And most importantly, it never seemed to affect the taste of chocolate which was a huge relief. But we are beginning to run out of chocolate in the house.

Another thing I have started to enjoy again is wine. I had given this up completely so as not interfere with the chemo drugs. Now that I am on break, I have been having an occasional glass of wine with dinner. Too bad I can't taste it.  -  No - no - just kidding. I can taste the wine well enough. And this takes a big load off of Barbara who has been complaining for months about "having to drink for two".

We now have a signed Purchase and Sale Agreement for Fox Hill Village in Westwood, MA. Except that we have started to call it "Foxdown Abbey". We think that is pretty funny, but we are not sure how the the people in the Abbey - I mean Village - will take it.

I should mention another side effect that does not seem to be going away. I think I mentioned in a previous blog that one of the drugs makes people talk more than normal. And since I normally talk more than just about anyone else, you can only imagine what it is doing to me. One faithful reader has suggested that the name of the blog, Warren MM Blog might in fact stand for Warren's Motor Mouth Blog. It also affects my writing (as you can tell by the length of this posting). And worst of all, it seems to lower the "Brain to Mouth Barrier" which, in my case, was never as high as it should have been to begin with. You can only imagine what my poor, long-suffering wife is having to go through.

So I had better stop writing now before I say something that I really shouldn't.

Next week, I go down to Boston for a full day of tests - which should be lots of fun. I will try to post a report on how that goes. 

A New Year Begins

Happy New Year everyone. It is interesting the way the dates are working out for me and the way they are lining up with the calendar. Yesterday was the end of my first three rounds of RVD (Chemo) therapy and the end of 2013. Today begins a new year and a new phase of my treatment. Well - actually, it begins a couple of months of "rest" from the RVD therapy which will start again on March first.

So, this means that I don't have to go to Dana Farber for three weeks. Nice as they are there, I can't say I will miss the place. When I do go the next time, it will be for a full day of tests and then I am off for another week. Then begins "stem cell harvest".

Stem Cell Harvest starts at the end of January. At that point, I make three trips to Dana Farber over a period of two weeks. Technically, this is "chemo therapy", but it is not to kill cancer cells. Rather it is to stimulate production of my own stem cells and prepare them for harvest. I have heard that the worst side effect of this could be boredom as I sit there for long periods waiting for the chemicals to do their thing. So I ordered a new Nexus 7 Tablet as a medical necessity. This was just the excuse I needed. It should arrive by the end of the week.

Meanwhile, I am feeling pretty good. My back still gets sore at the end of the day and I have trouble lifting things, but mostly I am doing pretty well. It will be interesting how I bear up as the chemo drugs wear off. I don't know if I will feel better or worse.

Some days are better than others - though none have been really bad - and I always wonder why they differ? If I have a day where I can do more or less than usual, I wonder whether it is the particular drugs that I took that morning (every day is different - I have a giant spreadsheet). Or is it my level of activity that day? Or because I lifted something that I should not have lifted that day? Or what I did the day before? Or how I positioned myself during the previous night's sleep? Or the phase of the moon? You just never know.

The one thing I can say is that I am slowly getting better over the long term. I now have no trouble doing things that were a real hassle a month ago. At the same time, there is a lot more progress necessary before I get back to doing everything I want to be able to do this summer. We'll cross our fingers and hope for the best. 

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. 

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 http://www.foxhillvillage.com. 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.

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. 

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.

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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.