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Tuesday, November 27, 2012

Blood Check

Today I went back to DFCI for a blood test to check on my white blood cell and neutrophil counts.  I have stopped taking Revlimid for the last week in the hope that they would rebound.  Sure enough, my WBC increased from 2.2 to 2.3 (whoopee) and my ANC level went up from 960 to 1,190 (above the magic threshold of 1,000).  These are not very impressive jumps, but enough for me to go back on the Revlimid without having to take a shot of Neupogen.  However, the Clinical Trial Protocol calls for my dosage to be reduced from 10 mg to 5 mg per day going forward.  I asked Muriel whether this might be increased back up to 10 mg if I tolerate the 5 mg level, but she said no.  It looks like I'll be constrained to stay at 5 mg for the duration of the clinical trial.

A couple of months ago, I was concerned that Dr. Richardson wanted to push me up to the 15 mg/day Revlimid level, and I was going to challenge him on that because I thought it would be too much.  Be careful what you wish for!  Now I'm stuck at the 5 mg/day level, and I'm wondering if that is enough!  While I am concerned about the long-term effects of taking too much Revlimid, I am also concerned that if I don't get enough, my t(4;14) high-risk cytogenics might trigger an early relapse.  I guess I just have to go along with this and hope it works.

In other good news, my pathology results from the blood and urine electrophoresis and immunofixation tests last week both show no M-spike, so I'm still MM-free eight months after my ASCT.  Of course I'm hopeful that these months will turn into years, but whatever comes along, I'll deal with it then.  I'm just grateful for every month of remission.

I've started wading through the abstracts for the annual meeting of the American Society of Hemotology (ASH) scheduled for Dec. 8-11 in Atlanta.  There are a total of about 5,000 abstracts on their website, and in the category of "Myeloma Therapy Excluding Transplantation" alone, there are about 170 papers being presented.  Wow!  It looks like everybody who is anybody will be there, as well as everybody else.

I'm looking for papers that might be most relevant to my situation.  I have a big change in focus from last year.  Then, I was concentrating on initial induction therapies for newly-diagnosed patients and pros and cons of stem cell transplants.  I  ain't there anymore.  Now I'm more concerned with research on therapies for relapsed/refractory MM (rrMM), as well as new discoveries on targeted care, such as monoclonal antibodies and immunization therapies.  I'm excited to note that there is a lot happening on various fronts, with new drugs coming online over the next couple of years, as well as potential breakthroughs in the search for a cure.  Of course, Dr. Richardson has several more papers to present this year.

On December 15, DFCI is sponsoring their annual Patient Symposium, which we have signed up to attend.   I'm sure Ken Anderson and Paul Richardson will be keynoting the event again.  They plan to summarize the latest developments from the ASH meeting, so it should be very interesting.  I hope to have a couple of relevant questions to ask during the Q&A.  We'll see.

The video teleconference I participated in with the WEGO Health Network has been edited and will soon be ready for release.  Unfortunately, not only could I not hear some of the dialogue, but my webcam wasn't working for a couple of the segments.  Linda, the moderator, suggested that I could re-record them, so I re-recorded one that I thought was worthwhile including, but I didn't bother with the other one.  Linda thinks she has enough good video to work with.  I'm a little trepidatious, but we'll see how it all turns out.  If it doesn't suck, I'll include a link.  Otherwise, fuggedaboutit!

Tuesday, November 20, 2012

Maintenance Cycle 4 Start

Yesterday was my monthly visit to DFCI for blood work and Zometa infusion.  This is the Cycle that my Revlimid dose was supposed to increase from 10 to 15 mg/day.  However, the prescription I got for next month was only for 10 mg.  I was going to ask about this, but as you will see below, the question is now moot.

The blood test results could have been better.  My platelet count was a low 124 (normal is above 155) and my white blood cell count (WBC) has dropped to 2.2 (normal is above 3.8).  Of more concern was my absolute neutrophil count (ANC), which has fallen to 0.96 K/uL (or 960/uL).  Anything below 1.0 is considered to be moderate neutropenia.  This is not a good thing, as it leads to increased susceptibility to bacterial infection.  This is the threshold used for suspending treatment until the ANC recovers.

The last time this happened was when I was on the consolidation therapy back in July.  At that time, I stopped taking the Revlimid (as well as the Velcade and dexamethasone) for a week and took a Neupogen shot to stimulate the neutrophils.  When I resumed the Revlimid, the dosage was reduced from 15 mg to 10 mg/day for the remainder of the consolidation phase.  That experience is one of the reasons I have been concerned about Dr.  Richardson's plan to increase my maintenance dose to 15 mg after 3 Cycles.

The neutrophil results didn't come in until after my appointment with Dr. Richardson's nurse, Mary McKenney.  I saw the results online later, and I was going to call her today to ask about it, but she beat me to it.  Mary said to suspend taking my daily 10 mg dose of Revlimid for the next week.  She has scheduled me for another appointment next Tuesday to check my blood counts again.  If they are OK, the clinical trial protocol calls for reducing the Revlimid dose from 10 to 5 mg per day.  It looks like I won't have to worry about convincing Dr. Richardson not to increase my dose to 15 mg after all.

I was able to finish up my Zometa infusion in time to attend the monthly meeting of the Writer's Workshop at noon.  What a pleasant and enriching experience this seminar is!  I feel humbled to be in the presence of such intelligent, talented, creative, and interesting people, all of whom are dealing with serious cancer issues, either as patient or caregiver.  Most of them are very well read and talk about authors and books that I have never heard of.  It makes me feel quasi-literate at times.  At least I was the only one in the room who knew the definition of "stanchion", which was used in a poem we were studying by Ted Kooser.

The writing assignments are challenging, and most of the contributions are beautifully written.  I am already struggling with our next assignment.  The next meeting will be on December 10, which is not my normal appointment day at DFCI.  However, I plan to drive into Boston that day anyway just to attend the workshop.

Thursday, November 15, 2012

Patriots Game

Last Sunday I went to the New England Patriots game vs. the Buffalo Bills with my son, Brian.  The weather was perfect, and we had a great time, as the Patriots hung on to barely win with only a few seconds left.  Fortunately, I have a strong heart (but my fingernails are shot).

This year our season tickets are really close to the field, a welcome change from our previous nose-bleed seats at the top of the stadium.  As you can see, we get a great view of the action on our end of the field.  However, on the other end, not so much.  That's where the big video screens come in handy.

During the half-time show, I was pleasantly surprised to see a video of the Patriots donating a large check to the Dana Farber Cancer Institute.  I didn't realize this, but the Patriots sponsor a team every year to participate in the Pan Mass Challenge, a charity bicycle ride, all the proceeds of which go to DFCI for cancer research.  As you know, I support my friend, Dave Poulin, who rides in this event every year.  It's a great fundraiser that donated a record 37 million dollars this year for cancer research.  I also didn't know that the Patriots Platelet Pedalers team raises money every year at this event targeted specifically for Multiple Myeloma research.  The video showed a huge check for over $719,000 that Patriots Platelet Pedalers raised this year, which was made out to Dr. Ken Anderson to sponsor his research to find a cure for MM.  Wow!  I was overwhelmed.  MM is not a well-known cancer.  To see this kind of visibility for MM at a huge sporting event like this was awesome.  Spend it wisely, Ken.  Go Pats!

I will continue to support Dave in his annual Pan Mass Challenge rides, but I also plan to support the Patriots Platelet Pedalers in their future rides.  Who knows, if I can get myself into shape, maybe I will start riding myself.  I need to do more to give back to those who have given so generously to help those of us who are fighting cancer.

Next Monday I go in for my monthly checkup and Zometa infusion.  I got my prescription yesterday for next month's Revlimid.  I was expecting the dose to increase from 10 mg/day to 15 mg/day, but it stayed at 10.  I wonder why.  I expect to find out what's going on Monday.

This year's ASH Conference is coming up next month.  I plan to start researching the abstracts to see what new breakthroughs may be forthcoming at the conference.  I also got an invitation today to attend the DFCI Patient Symposium on Saturday, December 15.  Last year's event was very informative and I'm looking forward to finding out the latest and greatest news on the MM front.  I will certainly share whatever nuggets I can find from these events.

Wednesday, November 7, 2012

WEGO Panel Discussion

After delays due to my disrupted travel schedule last week, we finally held the WEGO Health Network video teleconference panel discussion on Multiple Myeloma today.  Three of us participated.  I was pleased to note that one of the panelists was Pat Killingsworth.  The other panelist was Matt Goldman, an MM patient from California.  Here is a link to his blog:  Although I didn't know him beforehand, he is also a knowledgable and prolific blogger on MM issues.  The panel was moderated by Linda Man of WEGO, who asked us a series of questions for us to discuss.

It was a very interesting experience.  Each of us has a unique viewpoint on issues such as treatment options, how to deal with the disease, and future research directions.  We each had an opportunity to address each question.  I have no idea how the final video will turn out, but that is now in the hands of the editors.  Tomorrow I will have a chance to view some of the videos, but I don't know when the final edited version will be available.

I have to say that while I was making what I thought was my most eloquent and profound point of the session, I realized that my video camera had locked up and wasn't working.  Damn!  Sometimes technology ain't what it's cracked up to be.

Unfortunately, I sometimes had trouble hearing what the other panelists were saying (especially Matt).  I finally realized that often while someone else was talking, my camera was also recording, so there are probably times where I will be shown on a split screen just gaping stupidly at the monitor trying to figure out what they are saying.  What else might I have doing then?  Picking my nose, scratching my...well you get the picture. I sure hope those editors don't have a mean streak.

After the session, however, Linda said it was one of the best panel discussions they have had, so that's encouraging.  If it turns out well, I will post a link to the final product when it's available,  If not, well...

I have to give Pat Killingsworth credit for showing up and doing this panel discussion today.  He just found out on Monday that his MM has relapsed after less than three months of remission.  I discovered that this morning before our session by reading his latest blog post (see the link on the lower right of this screen).  What a trouper he is!  He faces all of his challenges with courage, optimism, and a can-do spirit that is an inspiration to all of his many followers, including me.  Here's to you, Pat.  Keep up the good fight.

Friday, November 2, 2012

Hurricane Sandy

Last weekend we flew to San Luis Obispo, California to meet with our daughter, Holly, and her boyfriend, Ryan, who drove down from San Francisco.  Our son, Jeff, and his girlfriend, Christine, also flew out from Massachusetts to meet us there.  We chose it as a vacation spot because of its reputed beauty and because none of us had ever been there before.  It was a great weekend with beautiful weather.  We rented a house in Oceano Beach within view of the ocean with a fire pit and grill.  Delightful!  On Friday, we took a dune buggy and ATVs out onto the miles of dramatic dunes along the coast.  What an experience!   You can't do this stuff anymore around here, so it was quite a thrill.

Gretchen and I planned to return to Boston Sunday night while the rest of them drove up to Holly and Ryan's one-bedroom apartment in San Francisco for a few more days, but because of Superstorm Sandy, our flight was cancelled.  After spending 3 hours on hold trying to contact United Airlines, I finally figured out that driving to the airport and talking to a real person might work. We eventually talked to a real agent in person and found that the first available flight to Boston was on Thursday, so we scheduled our return from SF and drove up to squeeze in with the others in Holly's apartment near Haight Ashbury.

We discovered that our house in West Newbury had escaped any damage, but the power was out for an undetermined duration.  In the mean time, we struggled through our ordeal by trying to make the best of it.  Here I am as we sampled the dungeness crabs on Fisherman's Wharf.  How tough is that?  I have to admit that I wasn't terribly distressed about the change in our travel plans.

If our flight hadn't been canceled, we could have been back here sitting in the dark with no TV and candles flickering around us.  Hmmm.  As it turns out, we had a great time with our family for those few days.  Here they are ready to go out partying on Halloween.  Since we had to get up at oh-dark-thirty for our flight, we decided to turn in early.  Oh to be young again!

When we finally got home last night, to our dismay the power was still out!  Fortunately, it came back on about 4:00 this morning, so everything is fine here now (except for all the perishables in the fridge and freezer that we had to throw out).  In retrospect, our timing couldn't have been any better.

On the down side, we hadn't planned for an extended stay away from home, so we didn't take any extra meds with us.  Gretchen was able to get a few days supply of her prescriptions, but I went without all of my mine for 4 days, which included my daily Revlimid doses, as well as my anti-viral (Valacyclovir) and antibiotic (Bactrim) pills.  So far, I don't seem to have suffered any ill effects, so I guess it's OK (I hope).  Next time I travel, I may plan a little better for unforeseen contingencies. 

Because of these travel delays, my video panel discussion has been postponed until Wednesday of next week.  I am really looking forward to participating in this.