Good News

This has been a fantastic week for playing golf here in Ocean Isle Beach, North Carolina.  Except for Sunday, which was rained out, we have had great weather, with temperatures reaching the high 60s and low 70s.  My golf game has continued its downhill spiral, but who cares...I'm having a good time.  Yesterday I played with my son Jeff, brother Terry, and good friend Bobby, shown in this picture.

 

Our two cooks, Paul and Joe, decided their goal was to fatten me up, so they have been shoving food at me all week.  Last night, over my weak protestations, they made me eat two creme brulees.  Oh well, you gotta do what you gotta do.  Everything has been delicious, and I am thoroughly enjoying it, knowing that I probably won't want to eat anything in a few weeks.

Oh yes, and I bought more hats.  Here is the latest number that I got today in the Pro Shop.   In the background is the signature ninth hole at the Rivers Edge Course where we played today.  We were supposed to play here Sunday, but it rained so hard that day that Jeff, started referring to it as the Oceans Bottom Course.

I have also added a couple of golf shirts and shorts to my wardrobe which better fit the new slimmer version of myself.  Of course I won't be playing golf for the foreseeable future, and by the time I can, I may be too fat again to fit into them.  Come to think of it, I should be so lucky.

Today I got a return call from Kathy Colson, who gave me the pathology results of my latest tests.  The protein electrophoresis and immunofixation tests continue to show no measurable monoclonal protein after the latest Cycle 7, which is good news.  The best news, however, is from my bone marrow biopsy results, which are now back.  In July, the plasma level (bad stuff) in my marrow was 60%.  Now there is no measurable plasma at all!  That means I have apparently reached stringent Complete Response (sCR) to the MLN9708 treatment.  Excuse me while I frolic and cavort around the room for a few minutes...

...OK, I'm back now.  A really good week just turned into a great week!

Hat Decisions

My forthcoming stem cell
transplant process will involve my taking IV doses of
cyclophosphamide
(cytoxan) and melphalan, both of which are potent
chemotherapy agents. As a consequence, I am facing the prospect of
dealing with temporary hair loss. Hopefully, it will grow back in a
few short months. In the meantime, I have no desire to emulate Yul
Brynner or Telly “Who loves ya baby” Sevalas, so I need to deal
with the issue of head coverings to hide my soon-to-be shiny bald
pate.

My first thought was a
close-fitting knit cap, which would provide some warmth as well as
cosmetic cover. I have several of those lying around, but
unfortunately, almost all of them are emblazoned with the New England
Patriots logo. Since the Superbowl, I don't want to think about or
be reminded of the Patriots until next season, if then. I do have a
red ski cap which could work. It is fine for skiing, but for indoor
use, I am a bit put off by the pom pom on the top. So yesterday, I
stopped into Walmart and picked up a knit cap, which set me back all
of 68 cents! A fashion statement it is not, but 'twill serve.

Looking through my closet, I
came across the fine Irish tweed flat cap that I had bought in
Ireland ten years ago. This hat certainly befits my surname and is
quite spiffy, but it might be a bit heavy for the forthcoming spring
and summer months. Last week at Sears, I picked up a faux version of
an Irish flat cap. Yes, it's polyester, not tweed, but it's light
and airy, which should work well during the warmer weather. While at
Sears, I tried on a few other hats of varying styles, but I left them
all at the store.

Of course, no discussion of
hats would be complete without including the ubiquitous billed
baseball/golf /sailing hats. I have dozens of these lying around the
house and garage, with logos from various teams, courses, venues,
cities, countries, you name it. I'll probably pick up one or two
more while golfing next week. I may need to rent space to store them
pretty soon.

This brings me to the piece
de resistance. I have a fine specimen of a Russian Ushanka hat that
my son, Brian, brought back for me from Moscow when he was there on a
high school field trip. Despite the fact that I have rarely worn it,
it is a real treasure. Of course it won't be appropriate for beach
wear, but I'll keep it in reserve for the colder weather. I'm
looking at my picture wearing this hat with the ear flaps down. I
notice a startling resemblance to Chevy Chase's cousin, Eddie, in the
movie, “Christmas Vacation”. I shudder to think of it. For
those of you who have forgotten or not seen it (who could possibly
not have seen this movie?), here is a video reminder. All I would
need is the cigar. Yikes! 

Feel free to comment on your favorite or least favorite chapeau. 




But enough of all this nonsense
about hats.  Now on to playing golf. Fore!

Testing Day

Today was a long day at Dana Farber.  We left the house around 8:00 am and got back just before 8:00 tonight.  We had a 10:00 appointment scheduled with Richardson, but we cooled our heels until 12:30 before we finally met with him.  It was worth the wait though.  He appeared unconcerned about the fluctuations in my beta2-microglobulin and albumin readings, which was a great relief.  He is also unconcerned about my weight.  He continues to maintain that I look great.  I have put on about 4-5 pounds in the last few days since I got my appetite back, so I guess there is nothing for me to be really worried about.  Finally, he confirmed that if I draw the tandem transplant arm of the clinical trial and choose to withdraw from the trial after the first transplant, I will still be eligible for Rev/Velcade/dex consolidation therapy and/or Revlimid maintenance therapy.  That was good to hear.  Surprisingly, Dr. Richardson also held out the possible option that if my numbers don't look as good as hoped after the first transplant, the option of a second tandem transplant might still be on the table.  I hope it doesn't come to that, however.  In summary, it was a very positive meeting and most of my concerns have been allayed.

By the time we left Richardson, the rest of my testing schedule for the day was down the poop chute. We ran around like headless chickens trying to get it all done.  Fortunately, everyone was accommodating and fit us in as best they could.

Tubes of my blood

Next on the list was my blood draw. Holy crap!  This set a new record...they sucked 31 tubes of blood out of me today! Check out this picture of the resulting collection.  What a multicolored array!  It's a wonder I didn't need a transfusion after that.

Next up was the echocardiogram.  A primary objective is to measure the "ejection fraction", which is the percentage of blood that is pumped out of the left ventricle with each heartbeat.  A normal ejection fraction is 55 to 70 percent.  I had this done in July, and the ejection fraction then was a respectable 60%.  The technician wasn't allowed to tell me the exact number today, but she said it was definitely better than it was in July!  That's cool.  Maybe after all the blood they just had relieved me of, what was left was easier for my heart to pump. 

Then came the pulmonary function test.  I've never had this done before, but I came through that with flying colors as well.  My lung function was above 100% of the expected values for my age.  This day was really going pretty well.

Next we rushed over to radiology to get my bone scan X-rays.  By the time that was done, we were running late for the ever-popular bone marrow biopsy, scheduled for 4:00.  Needless to say, this was my least favorite part of the day.  Last time I had this done at DFCI, Gretchen was in the room watching the procedure.  She wisely decided to forgo that pleasure this time.  While we were waiting, we talked with another patient who had just had it done.  He said his bones were so hard that they couldn't punch through last week, so he came back today to finish the procedure.  They had to use a drill to get through, and he said they had to stop every 5 seconds or so to let everything cool down before continuing.  Hmmm.  Just the kind of story I wanted to hear before undergoing the procedure myself.  I have been a bit gun shy about this ever since my first bone marrow biopsy done at Lahey Clinic last year, which was really quite painful.  I have to admit though that today it really wasn't too bad.  The technician, Fara, really knew what she was doing, and while it was somewhat uncomfortable, it wasn't very painful.  Maybe I'm just getting used to being continually poked, prodded, and stuck, so that none of this really bothers me much anymore.

The results of all these tests will be trickling in over the next week or so.  In the meantime, I am heading off to Ocean Isle Beach, NC on Saturday for a week of golfing, camaraderie, and fine dining (but, alas, not drinking!) with my brother, Terry, son, Jeff, good buddy, Bobby, and assorted other characters from Pennslvania.  I intend to enjoy myself completely...my Last Hurrah before the transplant process.  I hope to update my blog while I'm gone, but don't all hold your breaths.  I have my priorities straight here.

Transplant Preparations

Well, it's 4:00 am, and here I am at my computer.  My sleep patterns have been rather sporadic lately.  For the last few days, I slept most of the time.  Now I'm wide awake.  Why not take advantage and update my blog?

Today I go back to the dentist to get a full dental evaluation and X-rays of my 18 teeth (yes, I'm missing 14 of my original pearly whites).  Last week, I had a tuberculosis patch test done.  I'm not sure why they wanted that, but fortunately it was negative.  Then on Wednesday, I begin a set of tests at DFCI, including a pulmonary function test, echocardiogram,  X-ray skeletal survey, and the all-important bone marrow biopsy.

We will meet again with Dr. Richardson on Wednesday, and I have a couple of concerns I'd like to take up with him.  First of all, while my protein test results from Cycle 6 looked good (about the same as Cycle 5), there were a couple of other numbers that have been bothering me a bit.  My albumin level has dropped from 4.0 to 3.6, just below the normal range.  Also, my beta2-microglobulin has increased from 1.5 to 2.3.  These two numbers are used in the International Staging System for MM, and in July, my albumin was 3.5 and beta2-microglobulin was 3.3, which was borderline between Stage 1 and Stage 2 MM.  Am I becoming resistant to the drug protocol?  Is the MM starting to progress?  I hope not.

Another concern is my weight.  With my recent bouts of diarrhea and stomach ailments, I have lost another ten pounds.  I am trying to eat whenever I can, but I can't seem to put on any weight.  I have now lost nearly 40 pounds since July.  I'm starting to wonder how this is affecting my overall health.  I'll be curious to get Dr. Richardson's take on this.

I have a question for Richardson regarding the BMT CTN Protocol 0702 ASCT clinical trial that I am about to participate in.  If I get randomly assigned to the tandem transplant arm, I then have the option of withdrawing from the trial before undergoing the second transplant.  If I do that, what are my options then?  Can I go back on the MLN9708 trial (probably not)?  What about consolidation and/or maintenance therapy?  Will I be eligible for Revlimid as a consolidating agent?  If not, what?

I'm kind of hungry right now, so I'm munching on a bag of potato chips (the chips, not the bag).  If those don't stick to my ribs, I don't know what will.

Promising New MM Drugs

Last night, I watched the movie "Contagion".  The movie was just OK, but I got a kick out of one of the lines in the film.  One character was a blogger, who described himself as a writer, to which another character responded, "Blogging is not writing.  It's graffiti with punctuation."  Now I know what I am:  a punctuating graffiti artist (PGA?).  It's nice to know my place in the world.

Pat Killingsworth recently posted an interesting video by Dr. James Berenson, who gave an update during the recent ASH conference on the drug development pipeline for Myeloma.  Here is the link:

http://www.patientpower.info/video/update-on-the-drug-development-pipeline-for-myeloma?autoplay=1

I invite you to watch the video, even though it is sprinkled with lots of technical terms.  He gives a very upbeat assessment of the status of the many new drugs under development for treating MM, especially for patients who fail their existing treatments.  While these drugs have not yet achieved FDA approval, some are now in the approval process, while others may be available to patients in a clinical trial setting.  It's encouraging to note that if a drug in a certain class stops working, other drugs in the same class may still be effective.  Thus, if I became refractory to the proteasome inhibitor MLN9708, it could be effectively replaced by Velcade or Carfilzomib.  Similarly, the immunomodulatory drug lenalidomide (Revlimid) could be replaced by thalidomide or pomalidomide. The bottom line is that there are now many tools available for treating MM.  Dr. Berenson says that median life expectancies have gone from 30 months to 130 months over the last 10 years, and we are on the verge of regarding myeloma as a manageable rather than incurable disease.  It's a very optimistic overview.  I'll drink to that!  (Oops, sorry Dr. Richardson.)

Last week we met with Muriel Gannon, the transplant nurse, who gave us a blow-by-blow description of what to expect throughout the transplant process.  While it clearly won't be pleasant, knowing what is coming is more comforting than facing the unknown.  I told her then that I was inclined to go immediately to transplant after stem cell collection, but that I wanted a confirming opinion from Dr. Richardson before finalizing that decision.  She said she would email Richardson, who was in Ireland at the time (playing golf, I hope).  Today she responded that "Dr. Richardson is very impressed with your Complete Response and told me we are good to go with the schedule as it is."  So that's it...the die has been cast, the Rubicon crossed, the bridges burned, fait accompli.  Let's go for it!

Yesterday, I got my new crown and bridge installed.  It looks good, which it damn well better for the price I paid.  I am also scheduled to go back to the dentist next week for the pre-transplant dental evaluation and x-rays, which is a prerequisite for getting approval for the ASCT.  Since I have now taken care of all my dental work, I should be in good shape with that.