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.

Thursday, November 28, 2013

Happy Thanksgiving

Before I talk about our trip to Dana Farber (and the start of Chemo: Round 2), I think it is a good time to stop and think about all we have to be thankful for. Thanksgiving has long been my favorite holiday, since it for most of us it really is the only one that has not been either corrupted by commercialism or ignored as simply another day off from work.

I think that we are living in the best of times in the best of places. In the 100,000 years since the dawn of man and the 10,000 years of recorded civilization, no group of people has ever lived better than we do. In many ways, the average American today lives more comfortably than even most royalty 200 years ago (unless you like fleas, bedbugs disease and other vermin).

And this Thanksgiving I am more thankful than ever for the amazing medical care that is available for most medical problems - including my own. There might not be a total cure for my MM, but there is a good chance for many more good and productive years. More and more, people are "living with cancer" as well as other diseases. And living well with them.

I am particularly thankful today because for the last week, the discomfort from by "strained back" has been getting noticeably better every day. I am still not back to 100% - that will take a while, but it is definitely getting better.

Yesterday, my doctors said I was progressing as expected and that the markers from the various tests indicated that the chemo therapy was working. I made it through the chemo round 1 with minimal adverse side effects. So I am thankful for that.

So. As you sit down for Thanksgiving dinner and spend the weekend with friends and family, don't forget to think about and be especially thankful for all the good health that you have (even if there is some bad health to go along with it).  And also be thankful for the amazing resources that are available to those of us who face diseases. Yes - it might be expensive, but it is better to have it be expensive than to have it not available at all. 

Thursday, November 21, 2013

An extra trip to Boston

My first round of chemo was officially completed Tuesday night. Hooray! So far, the side effects have been minimal. Some of my taste buds are a bit numb - others are fine. Makes stuff taste weird, but this is not a big problem. I don't seem to get hungry, but I eat anyway and feel fine afterwards. My lower back still hurts when I stand up or walk around for too long, but that is not a side effect - it is one of the things they are trying to fix. It is a little better this week than it was last week.

So, we were supposed to have a week off from driving to Boston. Except that Tuesday afternoon, we got a call from the cancer docs regarding the sodium thing. They came up with a theory that it was caused by pseudohyponatremia (easy for you to say). What they are saying is that my sodium levels might be OK, but that other crap in my blood (from the cancer) is messing up the readings. They wanted me to see a doctor who specializes in nephrology for people with blood cancers,. Now, this is getting pretty specialized if you ask me, but I guess you want specialists.

Which meant that Barbara and I got to hop into the car again yesterday morning and make another schlep to Boston. We met with the doctor and chatted for 15 minutes. He sent us down to the labs for more blood samples (big surprise there, right?) and then sent us home. He said that he should get results on Friday.

If it turns out that the low sodium readings are due to pseudohyponatremia (don't you just love that word), it will probably mean that I can get the Velcade infusions, even if the readings are too low. It does worry me a bit that my blood is in such rough shape that the machines can't deal with it, but I will worry about that later.

So, for now, I am sitting hear, relaxing and waiting for my medical insurance broker to show up to help me register for a new insurance plan for next year. (If you like your insurance plan you can keep it. . . ) Well - mine is one that is going away after next year. So, I am switching over to another plan with a much lower deductible which should save me a fair bit of money. 

Saturday, November 16, 2013

Infusion Success

You may recall that at the end of our last exciting episode (on Wednesday), I had been unable to get my Velcade infusion due to my sodium levels being too low. We had similar problems today, but managed to work through them.

Last night, I tried increasing my salt intake and reducing my water intake in an attempt to raise sodium. I was actually taking salt tablets. However, when they tested me today, they found the same low sodium levels that they had seen on Wednesday.

I had brought a bunch of salty snacks and upon getting this news, I tore open and ate and entire large bag of White Cheddar Cheese Popcorn - the saltiest snack I had. I also took a couple of salt tablets and drank the rest of my V-8. After a half hour, they drew another sample and found this on to be 129. Progress but still not high enough.

The test had taken an hour or so and I suggested that some additional salt from the popcorn might have been absorbed and that they try again. We figured that this would be a real long-shot, but it was worth a try. And guess what? It worked. Hooray!

So, they gave me the infusion and sent me home. It is true that the dose they gave me was slightly reduced, but I was very happy to get anything. You can imaging that the thought of missing a second treatment was a bit depressing, but Barbara and I were both thrilled with even the slightly reduced amount.

So, we had a successful day and all is well. 

Friday, November 15, 2013

Help! I'm talking and I can't shut up!

As you all know, I am right in the middle of my first chemo sequence. I am sure you have all heard about the horrors of chemotherapy, with the nausea and baldness, etc.. But it turns out that there are is chemo therapy that is not so bad and that is what I am getting. So far, I have had only very minor side effects.

One side effect that they warned me (or more accurately that they warned Barbara about) is that they said I might develop a tendency to talk more than usual. Yup - they said I might become a real "motor mouth". Imagine me talking more than usual. A frightening thought. I mean, really, how can someone talk more than "constantly". But it happens from time to time. When it does occur, it is as if my mouth can't keep up with my brain and I end up thinking a sentence ahead of where my mouth is. It is actually kind of weird from my perspective. I can only imagine how it is for Barbara.

But that would not be so bad if it were not for the other side effect. I have a propensity to get hiccups. The seem to start for no reason at all. So, not only is my mouth going a mile a minute, but I am hiccuping at the same time.

Now add to that the Oxycodone meds which may have a tendency to scramble my brain a bit.

Maybe I should have skipped the Zoning Board Meeting last night. You may be aware that I sit as a member of the Town of Meredith Zoning Board of Adjustment - the key word being "sit" which is no problem for me. I am not normally one of the more quiet members and let's just say that last night was no exception. Fortunately, I was mostly able to suppress the hiccups during the times I was actually speaking.

So, now we are getting ready for tomorrow's trip to Boston - hopefully for my chemo infusion. I will be working to get my salt levels up and let me tell you that I am making the absolute best of it. I went to the supermarket this morning and decided to purchase a bag of Cape Code Potato Chips. I chose the high fat variety - because it had more salt. I also found some cheese twirls  that had even more salt than the chips and then I found some cheese popcorn that has even more salt than the cheese twirls. I'm ready. 

Thursday, November 14, 2013

Skipped Chemo Treatment

Barbara and I drove to Dana Farber yesterday in anticipation of my third chemo infusion. Unfortunately, I never got it. Before the infusion, they check a whole bunch of blood indicators and it turns out that my sodium level was 128 where they demand a minimum of 130. They gave me a bag of potato chips, some salty crackers and a bottle of V-8 (known to be salty) and tested me again. Same thing. We ended up sitting there for 5 hours and then they sent us away, deciding to treat this as a missed dosage. They did not seem to think this was a big deal, but they are not the ones with the disease.

The part that bothers me most is that this treatment is supposed to be part of a clinical trial. It is because it is a clinical trial that they insisted on the minimum sodium threshold. If I had not been on the clinical trial, they said they would have given me the chemo treatment anyway. This makes me wonder if the clinical trial details are more important than treatment.

So, I guess we will see what happens on Saturday when my next infusion is scheduled. We have purchased a six-pack of V-8 for me to drink on the way down to DF and I am thinking of picking up a package of Cape Cod Potato Chips to snack on while they are taking the blood sample.

Other than that, things are pretty good. By deviating slightly from my recommended pain meds, I have managed to find a combination that makes me feel pretty good and be pretty lively. Of course, tomorrow, they want me to try yet another scheme which I will do; hopefully, it will work as well or better.

Last night, after getting bounced from DF, we drove to have dinner with friends Patsy, Jim and Anita. We had a lovely dinner and evening. I could not drink wine, but I found that oxycodone is an acceptable substitute. 

Thursday, November 7, 2013

Chemo has started

Barbara and I are now in Boston at a really nice B&B near Dana Farber. Chemo officially started yesterday. So far, it has been quite painless and uneventful. It consists of two kinds of pills most days and an "infusion" twice a week. We decided to stay here in case there were any problems with any of the chemo drugs, which so far there have not been. I still feel fine - or at least no worse - probably slightly better because of all the steroids.

There is one potential side effect which has Barbara rather worried. They tell me that I might start talking much more than normal. I agree that this could be a frightening prospect.

Lots of pills. Perhaps if the motor-mouth effect extends to my blogging, I will have more to day about the pill thing over the next few days.

We will be here until the second infusion on Saturday after which time we will be heading back to NH to see our cats.

Regarding, these blogs, people should not expect them to be frequent or even regular. I intend to update them as I feel that I have something interesting to report - or possibly as I think of an entertaining thought or perspective to mention. This is why signing up for auto notification might be a good idea.

Thursday, October 31, 2013

This Blog Doesn't Work

I have been advised by a number of people that this blog does not work. Well - the blog itself works, but most people can't sign up for updates and people seem unable to leave comments.

People have asked me for what amounts to tech support on the blog. Sorry - I understand your frustration. In fact I share your frustration. But I will not be providing tech support. It is not how I want to spend my time.

Well - actually, this posting is tech support. But it will be the last tech support.

It seems there are two problems: Comments and Subscriptions.

I tried to leave my own comment and it asked me to select an account to "Comment As". Mostly I did not understand what they were asking me for. It worked when I selected "Comment as Anonymous", but if you choose this option, please include your name in the posting.

In the second case, I managed to leave the comment using my GMail account. In my case, this choice showed up as "Warren(Google)", so I assume this was as my GMail account, but I am not sure.  I don't know what you do if you don't have a gmail account. Maybe you are stuck using Anonymous, although there is at least one person who left a comment using some other system.

Regarding signing up for notification. I tried this today using a non-gmail account and it appears to have taken it. It sent me an email asking me to confirm the email address which I did. We'll see if I get a notification when I post this. Note that I think I tried this earlier today and it did not work.

So that is the end of the tech support on the blog. If you want to leave a comment and can't manage it, feel free to send me an email directly. If you try to sign up for support and it won't let you, feel free to send me another email letting me know and if I get enough of them, I will try to set up a mail list to tell you when there is a new posting.

But I really don't feel like doing tech support on

Now we will see if I get notified as to this posting. I will try to leave a comment on it as to whether or not I get notified.

I thought that computers were supposed to make our lives easier.


Wednesday, October 30, 2013

No worse than a bee-sting

Barbara and I headed down to Dana Farber again today - well to be more precise, we headed down yesterday afternoon and stayed in a hotel last night because we had an early morning appointment.

The appointment today was for additional tests - no treatment - just tests.

The first test was to draw some blood. As the tech was lining up the vials, I commented on the number of them. She said, "Yeah - there are quite a few. I fact I have to go into the next room to get some additional ones." It turns out that she filled 17 vials. I was very impressed. I was a bit concerned about the number of them, but then I realize that they all get filled from the same pin-prick so it does not really matter how many they fill - up to some limit I suppose. Barbara keeps asking me about exsanguination. Does anyone know what that means?

The other test was a bone-marrow biopsy. This did not sound like much fun at all. The worst part of is was that any time anyone at the clinic mentioned it, they kind of looked down and mumbled as if they did not want to discuss it. I was like freaking out. But - SURPRISE - it was no big deal. There were a couple of novocane shots. No big deal there. Then there was the part that involved what they refer to as "discomfort". Even that was no big deal. If anything, it was like a bee-sting. At the end, I was a bit disappointed that I had been so worried about such a minor thing.

So that was our day. Not very dramatic or exciting.

Our next event takes place next Wednesday when my treatment actually starts.

By the way - a couple of blog-housekeeping items. The main thing is that people have been having trouble leaving comments. It turns out that there should be a link at the bottom of each post that says either "No Comments" or provided the number of comments. I think that if you click that, you can leave a comment.

There is also an area to the right of the posting where it says, "Enter email below to be advised of new blog entries."

That is all for now. I will try to post next week once treatment starts.

Saturday, October 26, 2013

Don't come near me - I am radioactive!

Yup - I am radioactive. I was hoping that I would glow in the dark, but I checked last night and no such luck. Too bad - it would have been totally cool.

After they sprung me from Lakes Region General Hospital (LRGH)on Thursday, Barbara and I had to turn around and head to a full day of appointments at Dana Farber. They pulled a bunch of additional blood samples (I don't know what was wrong with the ones they got last week - or the many they gathered at LRGH earlier in the week.) They also did another complete "Whole Body Scan" - a set of about 18 X-Rays. They already had this; I think the x-ray lady gets a kick out of looking at pictures of my bones.

The main thing was that we signed up for the Clinical Trial. After waiting an hour and a half for our esteemed head oncologist (Dr Richardson) - and missing our lunch, we did have a good meeting with him. He also dashed off another whole set of prescriptions for me - none of them being for the treatment of the cancer itself. I am now taking so many pills with my meals that I don't have room in my stomach for any actual food.

The most interesting thing was that they pulled some blood and then mixed it with some radio-active isotope (Technetium-99) and then injected it back and put me onto some sort of scanner. I got to watch the display screen which looked to me like a whole bunch of totally random dots that kept changing. Apparently, the doctors can tell something from this.They gave me a card that explained why I was radioactive that I am supposed to carry around for the next three days in case I set off some sort of alarm, apparently so that I can convince the Homeland Security people that I am not in fact some sort of walking nuclear device.

The worst thing was this test where I had to breathe into some tube. Sounds easy, right? Guess again. There was this little old German woman telling me exactly when and how and when to breathe in a very strong German accent. She would say inhale, exhale, inhale, exhale exhale exhale exhale exhale. Then, as my skin began to go from white to pale to blue to green to some sort of pallid gray, she would say, "Now INHALE INHALE INHALE". And then she would say, "No - you did it wrong." And we would start over. Occasionally, at the end of a cycle, she would say, "Goot - That vas goot. Now do it again." And I would do the same exact thing again and she would say, "No No No - you did not do it right. You vill try again." I know the woman was just doing her job, but she came very close to ending up stuffed into the breathing chamber herself.

Anyway, it was a very long and very difficult day at the end of a very long and difficult week. But we are back in Meredith now and with any luck we won't have to go back to Dana Farber until next Wednesday. 

Thursday, October 24, 2013

Back from unexpected trip to LRGH

I just spent the last two days at Lakes Region General Hospital (LRGH) in Laconia.  Fortunately, it was nothing too serious although I did feel a lot like a pin cushion at the end of it.

In my last post, I mentioned that on Monday, we went to Hookset to get an infusion of a drug called Zumeta. The doctor warned us that one side effect could be a "slight fever". He said to call him if it got over 100.5. Well, it got to 103.7 and he told us to go to the ER.

When we got there, they figured it was probably some bacterial infection and they started pumping me full of some broad spectrum antibiotic. Also they put me on a saline drip because they said I was dehydrated and took a bunch of blood samples to see if I had anything weird growing in my blood.

As long as I was there as LRGH, my Dana Farber doctors decided that I should get an MRI of my spine. Turns out that LRGH shares one with two other hospitals. It is in a trailer that they haul around. Very convenient and apparently, it was a LRGH today so the stuffed me into the thing. I was in thre for close to an hour. They said, don't worry about it because we have headphones and music and you can listen to Mozart or a radio station. I chose the radio station, but accidentally told then to tune to a station that I rally can't stand. It didn't matter because once the machine started, I couldn't hear it anyway. Anyway, the good news is that the problem they were worried about in my spine had not occurred.

At the end of the day, they decided that I had no bacterial infection and my spine was OK. They gave me a bunch of drugs and sent me home.

Tomorrow, we have another appointment at Dana Farber. We were supposed to be there today, but the hospital visit slowed that down. 

Monday, October 21, 2013

Visit to the Bone Doctor

This morning, Barbara and I headed down to Hookset, NH to see Dr. Danny Simms. Dr Simms is an oncologist who specializes in bone problems.

The reason for this is that since my original back injury, I have been rather crippled up by back pain that does not seem to be getting better. I can sit at the computer or sit and read, but walking around can be uncomfortable. And forget lifting anything. So the doctors at Dana Farber recommended that we go see Dr. Simms.

There is nothing too exciting to report relative to this visit. He talked to us for a while and then looked at my X-Rays and Cat Scan. He then poked me a few times in lots of places and said, "Hmmmmm..".

Actually, he seemed very competent and knowledgeable and gave us a lot of helpful advise regarding exercise, diet, etc.

They then gave me an "infusion" of a bone strengthener called Zometa.They have a whole bunch of other names for it as well. I think this is so that if you learn the first name, they can start using some of the others to keep you confused.  It is a chemical that is supposed to slow down bone loss - mostly for little old ladies with osteoporosis.  Check it out at

Anyway, it should help my bones heal faster. Wish me luck. 

Wednesday, October 16, 2013

First Visit to Dana Farber

I guess you know by now that I have cancer or you would not be reading this. 

It all started about 3 1/2 weeks ago when I was hauling out our swim platform. I hurt my back - slightly. A few days later, while picking apples, it got really bad. After a week and a half, I went to my doctor and then, on Saturday, October 5, my doctor called and told me the news. Multiple Myeloma. The good news is that it is a highly treatable cancer and some people live with it for years. The bad news is that there is no cure. 

The time since then has been kind of a blur with two more trips to Boston, a whole bunch of X-Rays, a cat scan and on Tuesday, our first trip to Dana Farber Cancer Institute. My primary care doctor is very well connected and got us in to see Dr. Paul Richardson who is the clinical director for Multiple Myeloma at Dana Farber. We are confident that we are getting the best care available. 

We (Barbara and I) have been offered the chance to participate in a Clinical Study. We are inclined to accept, but want to discuss it with our Primary Care doctor first. He is away this week, but will be back on Monday. Note that the trial is VERY similar to what they call the "Standard of Care" for this disease, so it is not as if there is some chance that I will end up taking a placebo. The difference is mostly a slight deviation in the order of treatments. 

Whether we participate in the trial or not, the treatments will start off being relatively easy. It starts with a three drug cocktail called RVD. Two are oral and one is injected twice a week in Boston. I am told that my hair will not fall out - not that it would make all that much difference.  Then later, I will probably be subjected to a "Stem Cell Transplant" which promises to be less fun and have me in the hospital for three weeks. During this, what little hair I have WILL fall out. After that, they monitor me. 

So, that is the plan. Meanwhile, I am nursing my continuing bad back. I can mostly sit pretty comfortably and walk around, but I can't lift anything much heavier than a coffee cup (or a wine glass). They have also given me some pretty good drugs. We hope to see someone this week who will give me something to help my bones to heal and this too will help the back pain. 

So, that is our first update. More to follow.