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Sunday, April 26, 2015

MMRF 5K Walk/Run

In my last post, I talked about the Boston MMRF Race for Research which happened today.  We got up this morning earlier than I like to get to South Boston in time for the race.  What an experience!  Over 2,000 runners and walkers set out on this picturesque harbor-side course to support this worthy cause.

Although it was chilly, the weather was great for the race.  Our friend, Anne Riskin, lost her husband, Jeff, to MM a few years ago.  She and her family started Jeff's Juggernauts as a fundraiser for the Multiple Myeloma Research Foundation (MMRF) after his diagnosis.  Jeff's Juggernauts did a really terrific job in fundraising this year, bringing in over $19,000 for MM research!    They are actually one of the most successful fundraising teams in the entire event.

Doing my job
I didn't do the walk, but I have a valid excuse.  I was honored to be assigned to the prestigious duty of holding one end of the finish line tape.  Anne Riskin held the other end.  If I had actually run (yeah right!) or walked in this event, I would not have been available for this important task, for which I think I was eminently qualified.  Things have a way of working out.  ;-)

There are 9 of these MMRF fundraising races held across the country, but the one in Boston is the largest and most successful.  All of the funds raised from this event go specifically into research to find a cure for Multiple Myeloma.  That makes this a particularly important cause for me.

Susan Riskin finishing the 5K
It was really special to be there today.  We watched people of all stripes, athletes and non-athletes, young and old, able and disabled, patients and caregivers, all there for a common purpose:  Let's just beat the hell out of this disease!

It was a pleasure to meet Anne Riskin's daughters today, Karen and Susan, along with the rest of her family and friends.  Susan, who is a marathoner (New York, Boston, et al) ran today.  Here is a picture of her finishing for Jeff's Juggernauts in honor of her father.

After the race, we went back to Anne's house for a brunch, where we got to know their family and friends better.  I'm really psyched to get involved in this next year.  Many years ago, I would have been delighted to enter the race as a runner, but I don't see a running future in my cards.  However, maybe I could do a fast walk.  I want to do all I can to raise awareness of this insidious disease and help fund the research necessary to find a cure.
Paul and me

Dr. Richardson has long been a big supporter and participant in this event, and he was there again today.  I heard that he took the red-eye back from California last night to be here in time to participate.  He spoke to the crowd before the race, but unfortunately, we didn't get there until afterwards.

However, I did have a chance to speak with Paul.  He was really pleased with how well I am doing, and I told him I was about ready to finish my clinical trial including 3 years of Revlimid maintenance and then go off the Rev, which was the original plan.  But Paul said that we need to talk about this, because recent data have shown that continuing maintenance with Rev is better than stopping it.  OK now! That's news.  Maybe Gretchen is right, as she has been concerned about my going off the Rev.

From my previous research, the thought was that continuing Rev maintenance too long might result in one's becoming refractory to it, so it might not work any more if relapse occurred.  Maybe the current thinking has to do with the fact that an alternative IMID, Pomalyst, is now available in case one becomes refractory to Rev. I'm just speculating here.  Anyway, I will be having this conversation with Paul over the next couple of months to see what's next.  I'm anxious to find out what their research is showing and what might be my options.  I'm really looking forward to talking to Paul about all of this soon.



Tuesday, April 14, 2015

Bone Marrow Biopsy

Yesterday, spring finally arrived in Massachusetts.  With temps in the 70s, many of us human denizens cautiously emerged from our wintry dens to marvel at that strange bright orb in the sky.  The remaining banks of dirty snow are finally shrinking like the Wicked Witch of the West.  The epic Winter of 2015 is becoming just a nightmare memory.  Thank goodness!

We finally got everything moved out of our former residence into our new house at 10 Dole Place, West Newbury, MA  01985.  What a relief!  We are settling in nicely and we love our new home!  We're slowly figuring out where everything ended up as we continue to unpack. We had Easter dinner here for 13 of us, and it was quite a zoo trying to figure out where all the cookware and serving bowls were, but it worked out great.  My traditional smoked lamb came out awesome, if I do say so myself, as did everything else.  It was a delightful family gathering.

My test results from my recent bone biopsy have now been posted on the Farber Patient Gateway website.  I was pleased and relieved to see that the results are still great!  The Flow Cytometry results show no evidence of any residual disease.  The final note indicates that "Diagnostic histologic features of involvement by a plasma cell neoplasm are not seen."  In layman's terms, "There ain't nothin' there".  That's awesome!  It has now been 3 full years since my ASCT, and I'm still in remission, or as it may be medically described, stringent complete response (sCR) with no minimal residual disease (MRD).  However you describe it, I'm extremely grateful for that.

I do have one teeny tinsy concern, though.  It was noted that the bone marrow aspirate smear findings showed "mildly increased plasma cells" of 6%.  One of the criteria for stringent Complete Response (sCR) is for there to be less than 5% of plasma cells in the marrow.  So maybe I'm not in sCR after all.  I went back to my 2013 biopsy results, which showed only 3% plasma cells.  Hmmm.  Is this of concern?  I was going to email Dr. Richardson and ask him about this, but I then went back to my 2012 results, which showed 5% plasma cells.  It seems as if these numbers have bounced around within a very small range over the last 2 years, so I decided not to be a worry wart about it.  I might just mention it to Mary at my next visit on April 27 though, just in case nobody noticed it.  As a reference point, when I first checked in to the Farber in July 2011, my bone marrow biopsy showed that my marrow was 62% plasma cells.  Yikes!  I'll take 6% over that any day.

In a few short months, I will be at the end of the 3-year stem cell transplant clinical trial.  At that time, I will go off the Revlimid maintenance regimen completely.  Then I'll be on my own.  It will be a little bit like the first time I flew an airplane solo.  I was a bit nervous.  How is this landing going to go without my flight instructor?  I was just hoping I didn't crash and burn.  I didn't, so hopefully this will go the same way.  I guess we'll find out. 

Since my MM diagnosis, we have become friendly through a mutual friend with Anne Riskin, whose husband, Jeff, succumbed to MM about 6 years ago.  She and her family have been very active for many years in fundraising for the Multiple Myeloma Research Foundation (MMRF).  The MMRF sponsors wonderful research which has resulted in great advances in MM treatment therapies.  Every year, the MMRF holds 5K walk/run race in Boston to raise money for MM research.  This year's race will be held in South Boston on April 26.  Dr. Richardson is the honorary chair of this event and will speak before the race.  Here is a link to this year's MMRF race website:  MMRF Boston 5K Walk/Run 2015.

Anne and her family have formed a team called Jeff's Juggernauts, who participate in this race yearly to raise funds for MM research.  Unfortunately, we have had conflicts over the past couple of years and haven't been able to attend.  This year, however, we plan to be there for this exciting event on April 26.  We have made a contribution to Jeff's Juggernauts, but we won't actually do the walk (forget about run) this year, but maybe we will join Jeff's Juggernauts as active participants next year and try to raise money for the cause ourselves.  Here is a link to their website:  Jeff's Juggernauts.  I would encourage you to visit this website and make a contribution if you can to help them meet their fundraising goal for this year.  It would be greatly appreciated by me, as well as Anne and her family, and all those who suffer the burden of MM along with their loved ones.  Thank you.