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Monday, December 31, 2012

Happy New Year!

I want to report that I went to the Patriots game yesterday and it was awesome!  I bundled enough up to stay warm, and it was wonderful to spend the time with Jeff and his girlfriend, Christine, Brian, and my friend, Dave.  The Patriots won, so we all enjoyed it immensely.  The best thing about it is that I still haven't contracted any of the colds or viruses that have afflicted the rest of my family.  That's kind of puzzling, but I'll take it.

This has been an eventful year for me.  I began the year with very promising signs of progress with my MLN9708 clinical trial regimen to control my MM.  I then volunteered for the ASCT clinical trial and underwent the stem cell transplant in March, which went amazingly well.  I recovered quickly and now find myself in a stringent Complete Response (sCR) and on a Rev maintenance therapy for what I hope will be a long time.  It has been a good year for me!  I'm feeling really good and I'm very optimistic about the prospects for 2013.

I didn't report this in my last blog, but on Christmas day, I was walking back from the mailbox after retrieving the newspaper when I slipped on a sheet of ice which was covered by a dusting of snow.  I made a perfect two-point landing on my elbow and hip.  (I assure you all that there were no ladders involved in this incident.)  I rose unsteadily to my feet with a lot of pain but no indication of anything broken.  I don't know if my bones are naturally strong despite the MM or whether the Zometa has helped to strengthen them, but I am grateful that I can still take a hit like that without serious damage, although the 6-7-inch long purple scar on my elbow attests to the severity of the incident.  (As a friend of mine reminded me, I have no other appendage on my body of that length.  Thanks, Bob.)

I was hoping that my recorded video teleconference session would appear sometime soon on the WEGO Health Channel, but nothing was happening.  I emailed Linda Man to check the status and got a response that she no longer worked there.  Hmmm.  I then emailed the website contact to find out what was happening with the video we recorded and got no response.  Shit!  It looks like all the video that Pat Killingsworth, Matt Goldman, and I recorded will be relegated to the cutting room floor.  If Linda is no longer there, I guess they don't want to sponsor a video teleconference with her as a moderator.  Oh well.  There may be other times for me to reach others beyond this blog, but then again, maybe not. C'est la vie.  

While I was in DFCI last week, I saw a newsletter showing that Dr. Ken Anderson has received the American Cancer Society's Medal of Honor Award, its highest honor. He was honored for his contributions to the understanding of the cause and treatment of Multiple Myeloma and his service to the cancer research community.  I am so fortunate to be under the care of these incredible doctors at DFCI!

This is News Years Eve, and I've had a couple of glasses of champagne (don't tell Dr. Richardson), so I may not be too coherent.  However, I want to wish you all a very Happy New Year, and more importantly, a Healthy New Year.  There is nothing more important in life than love, family, and health.  I am blessed to have all three this New Year's Eve.  So Cheers everyone!  I'll drink to that!

Saturday, December 29, 2012

Happy Holidays

It's been pretty hectic for the last week with the family dribbling in for Christmas, but I love it!  It was a wonderful and memorable Christmas!  We finally all got together for at least one day before everyone had to disperse for their other obligations.  We've had scrumptious food coming out of our ears, and I've actually gained 5 pounds over the last week.  This Holiday Season has been wonderful, and it's not over yet, as Jeff, Brian, and I get to freeze out butts off at the final Patriots game of the season tomorrow versus Miami.

Thursday I went into DFCI with son Brian.  My blood count results were fine, with my neutrophils at 1.49, high enough to continue with my 5 mg/day dose of Revlivid for the next cycle.  So far, so good.  My transplant nurse, Muriel, said I am doing fantastically well, so that's always good to hear. 

One thing is amazing to me now.  Everyone around me seems to be fighting off a cold or flu or some bacterial or viral malady.  My grandson, Logan, has a cold and coughed in my face the other day (2-year old children are germ factories).  Gretchen, Jeff, Brian, and Pam have all been under the weather, and I've been in close contact with them all week.  What I can't understand is that so far, knock on wood, I'm still feeling fine.  I mean come, on!  My white blood cell count is down to 3.1 (normal is above 3.8) and the all-important infection-fighting neutrophils are well below the normal of 2.0+, so how come I haven't gotten sick yet?  This is really weird.  There may be those who would ask why would I go out tomorrow during a snowstorm in 20-25 degree weather in 30-40 mph winds to watch a football game given my weak immune system and predilection for getting sick.

I have no good answer for that.

Friday, December 21, 2012

ASH Meeting - Part 3

Last Saturday, Gretchen and I had the pleasure of attending the Dana Farber Patient Symposium in Boston.  It's an amazing sharing event, where the doctors and nurses connect with the patients and caregivers to communicate what's going on in the MM community.  As usual, Drs. Ken Anderson and Paul Richardson highlighted the event, where they focused on the latest research and results from the recent ASH Meeting.  It was also an opportunity to meet other MM patients and share our stories.  I give DFCI a lot of credit for spending the time to meet with us patients to connect, communicate, share, and answer questions as they did.  It shows that they are not just concerned with conquering this disease, but are responding sympathetically to the issues and concerns of their patients.  Very classy.

I also connected to an online video teleconference session on Monday, sponsored by the Multiple Myeloma Research Foundation (MMRF), summarizing the major news from the ASH Meeting.  From both of these events, I got a pretty good idea of the current status and progress in the battle against MM.

I previously reported on the encouraging clinical trial results with Kyprolis (carfilzomib), pomalidomide, and MLN9708 presented at the meeting, which open up a lot of new opportunities for MM patients.  For newly-diagnosed patients, there may not be too many improvements to the existing up-front therapies, because they already work so well.  However, MLN9708 could eventually replace Velcade as an oral pill to replace infusion therapy with fewer neuropathy issues, which would be a big plus.  The big news is that the options for those with relapsed/refractory Multiple Myeloma (RRMM) are improving greatly.  As for Kyprolis and pomalidomide, the DFCI team thinks they are probably best left in reserve for relapsed patients, at least for now.

There is a tremendous amount of laboratory research going on to find the best way to target the MM plasma cells.  One of the most intriguing presentations at the Patient Symposium was of research on immunization therapy, coupling the patients own immune cells with their myeloma cells and then re-injecting into the patient.  Some trials are underway, particularly for post-transplant patients.  I wish I understood the presentation better, but this person was way up in the clouds, and despite my MIT education, most of what she said eluded me completely.  However, the concept is that if you can get your own body to reject the myeloma, it never forgets, which is one of the pathways to an actual cure.  This is the kind of research that might eventually conquer this disease, but we have to wait and see.

It was encouraging to note the substantial progress on a number of other potential MM therapies. Myeloma cells have several surface markers that are potential targets for tracking them down and destroying them, without seriously harming the healthy cells.  This is a different approach from normal chemotherapy, which targets the bad guys, but also causes a lot of collateral damage to the good guys, a lot like carpet bombing an enemy stronghold.

Without going into a lot of detail, there are a promising research and clinical trial results, including monoclonal antibodies, such as elotuzomab (targets CS1) and daratumumab (targets CD38); HDAC inhibitors, such as panobinostat and vorinostat; CDK inhibitor dinaciclib; KSP inhibitor ARRY-520; and aurora kinase inhibitor MLN8237, to mention a few.  The Chinese also reported good results with a new therapy, Circularly Permuted TRAIL (CPT).  It's exciting to note the progress as the researchers are homing in on specific and individual therapies to attack MM.  Everyone is optimistic that there will be a lot of progress in the next few years.

It was interesting to note that there is progress in early treatment of patients with Smoldering Multiple Myeloma (SMM).  Until recently, the protocol was to do watchful waiting until it developed into full-blown MM.  That perspective is changing, and progress is being made in catching the disease earlier and keeping it from progressing.  Several clinical trials are underway to validate this approach.

I didn't notice a lot of attention at the ASH on high-risk disease, so I asked Dr. Richardson on Saturday what progress was being made to improve prospects for people with cytogenetic abnormalities, such as t(4;14) or del(17p).  His response was that both Kyprolis and pomalidomide, along with the new monoclonal antibodies, should be very effective with high-risk patients, which is good news for me!

Of course I could ramble on about more specifics, but I think this gives the general overview of where things stand in the fight against MM today.  While they aren't there yet, it's an encouraging story, and with all of the energy and talent focused on this battle, I'm very encouraged that they will break down the barriers one by one until they find a way to control or even cure MM.  I'm optimistic that I will still be here to benefit from their efforts.

Friday, December 14, 2012

ASH Meeting - Part 2

Sorting out the most important news from the ASH Meeting in Atlanta this past weekend is like trying to drink from a fire hose.  There were too many trials with too many new drugs to cover in any detail, so I'll just give a broad overview from my perspective.

It is interesting how my interests have changed since the 2011 ASH Meeting.  Then I was most concerned about the MLN9708 trials and other drugs for treating newly-diagnosed patients, as well as questions about when or if to undergo an autologous stem cell transplant (ASCT).  With all that now behind me, I have turned my attention to what progress is being made in treating relapsed/refractory MM (RRMM), a situation I will no doubt be facing one of these days.  One thing remains constant:  I am still looking for news on treatments and prognosis for high-risk patients, such as myself.

While there were no dramatic breakthroughs announced at the meeting regarding a potential cure for MM, excellent clinical trial results were presented for Kyprolis (carfilzomib) and pomalidomide.  Not only were these results as good or better than for the now-standard Velcade and Revlimid, both as initial therapy and after relapse, but they both also worked for patients who had become refractory to either or both of them.  This is good news for RRMM patients in the future, most of whom have been treated by one or both of these.  For myself, now that I am on a long-term Revlimid maintenance therapy, it is comforting to know that if that stops working, pomalidomide may be available to take up the slack. 

I was pleased to note that the MLN9708 trials are being very successful for both induction therapy and for RRMM patients.  These positive results indicate that it may be approved by the FDA as a standard treatment for MM within the next two years or so.  Along with Kyprolis, MLN9708 has a real prospect of displacing Velcade in the future as a drug of choice for treating both newly-diagnosed and RRMM patients.  Both of these drugs minimize the periperal neuropathy (PN) associated with Velcade, and the MLN9708 has the advantage of being given orally.  Great news!  I'm so glad I was able to participate as one of the first clinical trial volunteers for MLN9708 as a newly-diagnosed patient.

There are numerous other exciting new drug therapies being tested in clinical trials.  A lot of promising results were reported at this ASH Meeting, but I'll spare you the details for now. (and, if you're lucky, I never will).  Unfortunately, the initial trials for these drugs usually involve patients who have had multiple relapses and have become refractory to most or all of the available regimens.  They are desperate for some kind of salvage therapy.

The first step in a new drug is to see whether it has an anti-MM effect when taken alone, so a trial such as this may be a last resort for some of these heavily-treated patients.  A promising new drug may have an Overall Response Rate (ORR), which means Partial Response or better, of 20% to 30% when taken alone.  This may not sound very good, but a drug needs to show some anti-MM benefit on its own, which will enable it to move to the next stage, where it will be combined synergistically in follow-on trials with other known MM drugs, such as Velcade, Revlimid, dexamethasone, or others.  In the meantime, what happens to the 70% to 80% who didn't respond?  Their options may have just run out.

When reading the statistics, it's easy to ignore the human side of all of this.  Many of these heavily-treated patients are sacrificing their lives to advance the science for those who will follow them.  It's really sad when you think about it.  The hope is that with all the research and new treatment options becoming available, there will be fewer and fewer patients in this boat.

Tomorrow, we are attending an all-day Patient Symposium at Dana Farber, where the ASH results will be addressed in detail.  I hope to come back with a more complete sense of what progress is being made in the fight against MM.  I'll try to summarize anything interesting that I learn, once I've had a chance to digest it. 

Tuesday, December 11, 2012


There are a lot of exciting Multiple Myeloma results coming out of the ASH meeting, and I'm sure you're all agog with breathless anticipation waiting to hear my views on the latest developments.  But be patient.  I'll get to Part 2 of my ASH report in good time.  First, though, I want to talk about yesterday.

Last night, son Jeff and I went to the Patriots/Texans game in Foxborough.  Boy was it fun to watch that blowout!  GO PATS!  As you can see from the picture, we have great season ticket seats near the field.  Next week, Jason and I are going to the Sunday night game against the 49ers.  I'm getting a little old for these night games, especially two in a row (I got home at 1:30 this morning), but these season tickets have turned out to be great for father-son connections.  Brian and I did the Buffalo game a few weeks ago, and on December 30, all four of us guys plan to be at the Miami game.  If we can twist Holly's arm to come with Ryan, then the whole fam damily may be there (except for Gretchen of course, who would rather jump off the Tobin bridge than go to a football game).  Holly doesn't like football either, but maybe we could entice her by throwing a good tailgate party.  That I know she likes!

Another high point of yesterday was my visit to DFCI.  This time, I didn't have any medical reason to be there.  I went only to attend the monthly meeting of our Writers Workshop.  I have already blogged about how special these people are and how stimulating and interesting it is to share with and learn from this group.  They are all amazing people, with poignant stories to tell, either of their own struggles with cancer or as caregivers dealing with the suffering or loss of loved ones.  Our leader, Amy Boesky, does a wonderful job steering the group and challenging us with writing assignments every month.

This month our assignment was to write a poem, essay, or blog post to address one of the following prompts related to the Holiday Season:
  • celebration of light in any sense
  • what is valuable and important about an ordinary moment
  • choose an object that has particular importance or memories
I struggled with this assignment all month.  I had a few thoughts, but nothing coherent was occurring to me.  I almost decided to blow off the assignment and call in sick for the meeting (cough, hack).  But finally, yesterday morning, I decided I had to go for it.  I was reminded of my freshman year at college, when our Humanities teacher, Bob Shipkey, had us write a 500 word theme every week that was due at noon on Saturday.  Every Saturday morning I would wake up and in a panic, start typing like crazy to beat the deadline.  Yesterday morning felt a lot like that.  So when I finally sat down in front of my computer, it just came together and it took about 10 minutes!  You might say that I am deadline-driven.

When I read it to the group, they asked me whether I planned to post it on my blog.  I said I was thinking about doing that, and they encouraged me to do it.  So in deference to my colleagues, here it is:

The Hearth

I just threw another log on the fire. It hisses and crackles as it catches. I nestle into my comfortable spot on the couch and stare, transfixed, at the burning logs. In the partially darkened room, the leaping flames cast fleeting flickering shadows on the ceiling.

My grandmother's antique clock sits on the mantle. As a child, its comforting ticktock and mellow chimes would lull me to sleep during our summer vacation visits. Now silenced by age, its hands are frozen in time at 4:27 and a half. Nevertheless, I smile as it evokes memories of those simpler carefree times.

Since the dawn of modern mankind, the campfire has provided security, comfort and warmth to those gathered around it. It is no different tonight. As I bask in its warm orange glow, I am content and grateful...grateful for our hearth and home, for my family, and for the extra days like this my medical team has afforded me. Yes, life is good.

Sunday, December 9, 2012

ASH Meeting -Part 1

I ambitiously titled this post as "Part 1", which puts me on the hook for following up with at least a Part 2, if not more.  What pressure I put on myself!

Anyway, in my last post, I reported on the recent audio teleconference on the Cure Panel Talk Show with Dr. Berenson, where he articulated his "less is more" and "do no harm" approach to treating MM.  Tonight, I watched a video webcast of a live conference from the American Society of Hematology (ASH) meeting, which is ongoing this weekend in Atlanta, Georgia.  The webcast was sponsored by the International Myeloma Foundation (IMF).  I was particularly interested in this, as one of the panelists was Dr. Richardson, and it also included Dr. Durie of the IMF, Dr. Leleu from France, and Dr. Orlowski from the MD Anderson Center in Texas.

Richardson spoke first.  His philosophy is 180 degrees opposed to that of Dr. Berenson.  It's a wonder they don't come to fisticuffs whenever they cross paths!  I'd love to see them debate.  Richardson strongly advanced the position that there is "no role for keeping the best drugs in reserve", because it is "most likely to make progress against MM early rather than late".  Furthermore, in discussing global trends, his approach is to "get the snake in the basket and then sit on it".  He likens long-term maintenance as the mongoose sitting on the basket trapping the MM python within.  Strikingly vivid metaphors, huh?  I have an image of that repressed python struggling within me, and I'm now taking 5 mg of the mongoose (Revlimid) daily to sit on that basket.

There is a lot of other exciting news coming out of ASH.  There are a number of papers on Kyprolis (carfilzomib) and pomalidomide, showing excellent results from both.  Kyprolis seems to work at least as well, if not better than Velcade without the PN side effects, while pomolidomide may even be more effective than Revlimid with less neutropenia.  This is great news!  When that day comes when I relapse (and I know the snake will get out sometime), it's comforting to know that there are even better therapies at hand than the ones that worked so well for me the first time.  In addition, a paper by Durie shows that a regimen of Kyprolis/pomalidomide/dex not only gives excellent response for relapsed/refractory MM patients, but seems to work as well for high-risk patients as well as for low-risk patients.  That was music to my ears.

There are a bunch of other new promising drugs undergoing trials.  The Phase 2 MLN9708 trials seem to be going very well, with an Overall Response rate (OR) of 88%.  I'm glad I had a chance to get in on Phase 1 of that clinical trial.  Other exciting results are being reported for the monoclonal antibodies, elotuzumab and daratumumab (those roll off the tongue almost as easily as Rosencrantz and Guildenstern).  Promising clinical trial results are also being reported for Vorinostat, an HDAC inhibitor, and ARRY-520, an KSP inhibitor.  I don't know what the acronyms stand for that these drugs are inhibiting, but if the MM cells don't like them being inhibited, then I'm all for it.

There are other interesting drug results to report on from ASH, but I'd better stop now, or else I might not have anything useful to discuss in Part 2, or (gulp) even Part 3 of this series.

Tuesday, December 4, 2012

Birthday Postscript

Here is my grandson, Logan, helping me try to blow out the candles on my birthday cake.  Thank goodness Gretchen economized on the number of candles, or a much larger cake would have been in order, not to mention a probable call to the fire department.  They were trick candles, which kept re-igniting, which Logan referred to as "silly candles".  I'm so glad Brian, Pam, and Logan drove up from New Jersey for my birthday.  We were joined by Jeff and Christine, along with our dear friends, Bobby and Cathy, for a delightful celebration dinner.  It was a wonderful day!

Today I went in to Dana Farber for a CBC (complete blood count) blood test to check my WBC and absolute neutrophil count (ANC).  I could have scheduled the test locally and avoided the trip into Boston, since I didn't have any appointments or infusion scheduled.  However, while there I was able to pick up a couple of 24-hour urine collection bottles, one of which I need for my next monthly visit.  (Just try collecting 24 hours of urine in a coke bottle or whatever other random receptacle you might have lying around the house.  It's not a pretty sight.)  I also refilled a prescription for folic acid at the pharmacy, the last of which I just used up this morning.  Also, I had a chance to stop in and chat with my favorite nurse, Heather, so all in all, it was worthwhile to make the trip.

The good news is that my blood test results came back great!  My white blood cell count went up from 2.3 last week to 3.0, still below the normal range, but higher than it has been in months.  My platelets have also jumped back up to a normal 173.  The best news is that my ANC jumped from 1.19 to 2.13, back into the normal range.  I'm no longer neutropenic!  That means that I seem to be tolerating my 5mg dose level of Revlimid pretty well.  I'm really glad my ANC level is back to normal, as I was a bit concerned about my susceptibility to infections, especially with cold and flu season imminent.

There was a recent audio teleconference on the Cure Panel Talk Show with the noted MM oncologist, Dr. James Berenson.  Among the panelists were Pat Killingsworth and Matt Goldman, both of whom were panelists with me on the WEGO Health video teleconference we recently recorded (which hasn't yet been published).  Here is a link to the show:  Cure Panel Talk Show with Dr. Berenson.

Berenson has a very different view of MM treatment from Dr. Richardson and a lot of the rest of the MM community.  At one extreme is the University of Arkansas Myeloma Institute, which promotes the most aggressive approach, Total Therapy 3, involving heavy chemotherapy and multiple auto and allo stem cell transplants.  Dr. Richardson doesn't subscribe to tandem transplants, but believes in hitting MM hard up front to beat it down early and keep it down.  Dr. Berenson's approach, on the other hand, is "do no harm".  His concern is to maximize quality of life by minimizing side effects, and he never recommends stem cell transplants for any of his patients.  It's very interesting to hear the vastly different approaches to managing this disease from the various experts.  No wonder it's so confusing for us patients to know what to do.  Dr.  Berenson will be presenting several papers at the upcoming ASH  conference, and he promises to report some exciting results on carfilzomib (Krypolis) and pomalidomide trials.

I will be following the ASH conference closely, and I'm looking forward to seeing some substantial progress in the battle against MM.  I will share my observations and comments over the next couple of weeks.

Sunday, December 2, 2012

Three Score and Ten

Today is my birthday.  Birthdays were never a big deal for me, but they have become more meaningful of late.  Each one is now a gift.  In some ways, this one is more meaningful than most. One reason is that today begins my eighth decade on this planet, which is a milestone of sorts.  Another reason is that my father died shortly after his 70th birthday, and I have always wondered if I would outlive him.  It now appears that unless I step in front of a bus in the next three months, I will.

It is hard for me to imagine myself being as old as I thought my father was when he turned 70.  However, he had been in poor health for a number of years.  He had abused his body by smoking for most of his life and finally succumbed to enphysema.  Despite my medical condition, I feel pretty hale and hearty for an old coot of my age.

My dad had the gift of poetry, which alas, he didn't pass down to yours truly.  My late brother, Michael, inherited that particular gene.  When Dad turned 70, he wrote what would be his last poem.  I've thought of it often over the years, so I decided to reproduce it here:

It isn't the Biblical span that bothers me so;
God knows the pillow would soothe my tired head
As much if I knew I was slated as next to go.
No!  It's the hundred little knacks that have fled

One by one, so I barely noticed them going.
'Til like a thunderclap I suddenly became aware,
 And I wanted to weep at the sudden, certain knowing
That I'd lost many skills that once I had to spare--

The thickened voice; the shortened reading arms;
Attention's briefened span; the lung's quick gasp
And trembling legs at stairs; the hard decision's qualms;
And (God forgive my plaint) the slackened mental grasp.

It's not that I want to be young again at all;
It's just that I wish I hadn't so far to fall.

Thankfully, I don't feel the same way Dad did at my age.  Yes, it is somewhat frustrating to have lost some of the skills "that once I had to spare".  I have to learn to temper my expectations of myself and not scamper about on ladders with chain saws, for example.  Otherwise, I don't feel my age, and it's hard to believe that I am now a septuagenarian.

On this day, I don't feel that I had "so far to fall" as did my father.  Despite my MM, I am optimistic for the future and I'm looking forward to celebrating this December 2 anniversary many more times.