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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.

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.

Wednesday, October 24, 2012

Maintenance Cycle 3 Start

Monday was DFCI day, which began the third cycle of my long-term Revlimid maintenance therapy.  My blood test results were generally good, especially as my anemia seems to be getting slightly better.  The results of the 24-hour urine test were also good, as there is still no apparent M-Spike and no monoclonal protein detected.  Yay!  So far, so good.

By the way, having to collect 24 hours of urine every month before my DFCI visit is a bit of a pain.  I have had to do this more than once while traveling (just think about trying to take a liter of urine through an airport security check).  Then I have to carry the bottle into DFCI disguised in a brown paper bag like a wino on a street corner.  Nobody is fooled, however.  I can't wait to get rid of it at the first opportunity when I get my blood draw.  If I want to grab something to eat before my appointment, I have to lug my unpleasant package through the cafeteria.  That's not a lot of fun either.  But I digress.

On the down side, my white blood cell count (WBC) was a low 2.3 and my neutrophil count was a marginal 1.08.  If my neutrophils fall below 1.0, I will have to take a Neupogen injection to build them back up again.  This is a normal side effect of the Revlimid that I take every day.  Even at 10 mg/day, my counts are marginal, so I expect I will have more problems when I go up to 15 mg/day, which is scheduled for next month.  Furthermore, as we enter flu, cold, and pneumonia season, the last thing I want is to have my immune system suppressed so I won't be able to fight this stuff off.  Nurse Mary McKenney confirmed that Dr. Richardson would probably want to try keeping me at 15 mg/day, using Neupogen shots as necessary to keep my nuetrophils up.  I hate that idea!  I have not met with Dr. Richardson for several months now, but I requested that I meet with him next month to discuss how to proceed with this maintenance protocol going forward.

While I was there, I ran across Tom, the MM patient who had his stem cells collected the same time I did, and his partner, Ellen.  I've written about him before (see my May 1, 2012 post) , and we've kept in touch over the intervening months.  He has had a much tougher time than I had.  His ASCT was much more difficult than mine, and he had a stroke, along with numerous infections, blood transfusions, and setbacks along the way.  He is now undergoing radiation to shrink tumors in his sacrum and hip.  He wasn't feeling well from the effects of the radiation, so we didn't spend much time together. It was good to see him, however, and I hope the best for him in his therapy.  I will continue to keep in touch with him.

Today I worked with Linda from WEGO Health Network ( setting up my computer to do video teleconferencing for my upcoming panel discussion.  I have a nice new Logitech webcam that she sent me (even though I probably didn't need it).  It took a lot longer than it should have, but she finally got me set up on Adobe Connect.  The plan is to record the teleconference some time next week (Tuesday or Wednesday).  As I understand it, there may be a panel of three of us discussing some MM topic of interest.  I'm not quite sure what that topic will be yet, but I have made some suggestions, and Linda will send me an email with several choices (hopefully sometime before we go online).  Here are some topics that we might discuss:

1. introduction/Experience with MM
2. Dealing with the mental part of myeloma, living a normal life while dealing with everything that comes with the disease
3. Early vs. Delayed stem cell transplant
4. Pros and cons of long term maintenance therapy
5. level of response effect on prognosis
6. advice for those dealing with MM after first diagnosed

Their editors will polish up the clips and create a conversational video to post on their website.  This should be a lot of fun!

Friday, October 19, 2012


As I have pointed out in my recent posts, I have been thinking about what direction I should take with my blog, now that I have reached what I hope is a stable state of remission for some period of time.  So I was pleasantly surprised to receive a very timely email the other day from Linda, who is a production assistant for an online health website,  This appears to be an enterprise which emphasizes various social media outlets to disseminate information on a variety of health issues.

Linda said they are in the process of building an online video service to provide advice and information on various health topics.  She had come across my blog while researching Multiple Myeloma and thinks that I would be a good addition to their MM channel.  I immediately jumped at the opportunity.  I spoke with her today, and sometime over the next week or so, I plan to  participate in a video panel discussion on one of the MM topics that interest me using a webcam on my computer.  Their editors will polish up the clips to create a conversational style video to be featured on their TV channel.  Here is a link to their TV channel with some videos, one of which addresses MM:

This looks like an interesting opportunity to reach a larger audience with some of the issues that I have been struggling with since my diagnosis.  I don't know how this will turn out, but I am looking forward to participating in this endeavor.  I hope I can make some positive contributions.  I will keep you informed.

One of the topics that has concerned me for some time is the question of using Revlimid for long-term maintenance therapy.  I have already delineated some of the potential drawbacks, including various side effects, secondary cancer risk, and the potential for MM to become immune to it.  Now, it appears that there is another risk.

In today's blog by Pat Killington (see the link on the bottom right of this page), he has been having problems with his Revlimid maintenance therapy.  There is a suspicion (hopefully unfounded) that he may have contracted myelodysplastic syndrome (MDS), in which the stem cells in the bone marrow stop producing healthy blood cells.  Many of these patients also progress to acute myelogenous leukemia (AML).   Both of these diseases are quite commonly acquired by patients with MM.  The disturbing thing is that there is some evidence that Revlimid might be an enabler of contracting MDS.  I certainly hope that this is not the case, especially in Pat's case, but this seems to be just one more thing to worry about.  I plan to do a lot more research on this.  This is another discussion I plan to have with Dr. Richardson.

Monday, October 15, 2012

Keep On Blogging

After my last post, I have received several comments encouraging me to keep updating my blog and keep people informed of my progress.  It's very gratifying for me to hear from people I don't know saying that they find my blog informative and/or interesting.  That gives me renewed energy to keep steady on this course for the time being.

The stories that I hear from other MM patients are very poignant.  Some are too young to have to endure this disease.  Others have been fighting it for years, only to have it rear its ugly head again.  Even those of us who have achieved remission for the time being are just waiting for the Sword of Damocles to fall and the inevitable relapse to occur.  None of us is very far removed from the next blood test which may tell us that the disease is back.  And for those who have relapsed, they are searching for new ways to halt the spread of this pernicious disease.

For those of us who have achieved CR or better after initial chemotherapy and perhaps a stem cell transplant as well, the question of how to proceed with maintenance therapy becomes an issue.  I am participating in a clinical trial in which I am scheduled to receive Revlimid maintenance therapy for the next three years.  Dr. Richardson is a staunch believer in this approach.  However, there are many oncologists and patients who dispute this treatment method.

Revlimid does have some serious potential side effects, one of which is the risk of blood clots, or deep vein thrombosis (DVT), which can result in pulmonary embolisms.   That is why I am taking aspirin daily.  It is also known that Revlimid increases the risk of developing secondary cancers, as if MM isn't bad enough.  One of the biggest concerns, however, is that continued use of Revlimid over a long period may cause one to become refractory, rendering it ineffective once relapse occurs.  What then?  There are also other side effects of Revlimid, such as lowered white blood cell counts, low neutrophils, and low platelets, which increase the risk of infections, especially as flu season commences (I did get my flu shot last week).

I go back into DFCI next Monday for my monthly blood test and Zometa infusion.  After this next month of 10mg/day of Revlimid, Dr. Richardson plans to up the dose to 15 mg.  I have every intention of continuing with this clinical trial of Revlimid maintenance, especially since I have the high-risk t(4;14) chromosome abnormality, which seems to respond to Revlimid.  However, I plan to carefully monitor the dosage amounts.  So far, I seem to be tolerating 10 mg pretty well, but I'm nervous about upping the dose to 15 mg.  Nurse Mary McKenney said that Dr. Richardson likes to keep it at 15 mg even if the white blood cell and neutrophil counts drop by injecting Neupogen to boost them back up.  I don't like that idea.  I'd rather reduce the dose so I don't have to artificially increase my neutrophil count.  I have a feeling that Dr. Richardson and I may be heading for a heart-to-heart talk one of these days soon.   Want to take any bets as to who will win?

Wednesday, October 10, 2012

What's Next?

It's been over a week since I've updated this blog.  One reason is that I spent the last long "guys" weekend up at the family farm in Champlain, New York, on the Canadian border relaxing and playing golf with my son, Jeff, and good buddy, Bobby.  The fall foliage was on full display, and we barbecued steaks, chickens, and veggies on the grill. Afterwards, as night fell, we sat around the roaring fire pit looking at the stars, smoking cigars, sipping wine or beer, and just talking.  (Don't tell Dr. Richardson about the cigars.)  It doesn't get much better than that.  Sadly, we had to close the place up for the winter, so we won't be back until next spring.  Sigh.  These are the times that memories are made of.  When one's time may be limited, one collects and treasures whatever memories one can.

I have been struggling a little bit lately about how to proceed with this blog.  As of now, I seem to have reached a plateau in my response to therapy, and with any luck, I may stay in my current state of IR remission for some time.  If that is the case, I may not have much exciting new news to report on my progress or lack thereof in the near future. (I really hope it stays that way!)

I really enjoy writing this blog.  It is a cathartic outlet for me, and I enjoy telling the stories of my progress and that of others whom I encounter.  I also enjoy delving into the MM research and commenting on what I think are important discoveries or conflicts on how to approach treatment options.  I also know that when I start to get too technical, I turn some people off, so I try to insert some humorous asides to keep my readers from falling asleep.

I also treasure those other MM patients that I have met through this blog, and I am following their situations with hope and concern.  I want to learn from their experiences as well as share my journey with them.  I don't want to lose those connections.

Where to I go from here?  I would like to find a way to keep updating this blog at least once or twice a week, as I have been for many months now.  But my own MM story is getting a little stale at that pace.   I could make it a little bit more research oriented, but I don't want it to get too dry and boring.  Besides, there are other blogs (such as Pat Killingsworth's) and news feeds ( such as the Myeloma Beacon) that keep up with the latest and greatest news reports.  I could opine on what I think are the best options out there, but I'm not a doctor, so what gives me the right to have an opinion?  As a patient, however, I may have a valid opinion on some matters that doctors might not appreciate.

There are some issues that I would like to continue to pursue, such as the effects of long-term maintenance therapy with Revlimid, how to decide if and when to do a stem cell transplant, and how best to deal with high-risk cytogenics, such as my t(4;14) translocation, among others.  One of my strengths is that I have a technical bent, and I think I know how to wade through a lot of the bullshit gobbledegook out there to cull some of the more relevant facts.  However, I don't see how to continue posting on these subjects at the same rate that I have been up until now.

I solicit inputs from you, my readers.  What would you like me to continue writing about?  If you want me to just shut up, let me know that too.  I would like to keep this blog to be informative, helpful, and entertaining.  The last thing I would want is for this to be like a Facebook page (to which I do not belong) describing the minutia of my incredibly boring life.

You may respond online to this blog or email me directly with your suggestion.  In the meantime, I will continue to plod along this same path, hopefully with something interesting or informative to share.


Monday, October 1, 2012

Biopsy Followup

In my penultimate post, I reported on the results of my recent bone marrow biopsy, which included Multiparameter Flow Cytometry (MFC) results.  The MFC test can determine whether there are any measurable MM cells in the bone marrow.  The test is much more accurate than the standard blood serum immunofixation test.  If no MM cells are detected by MFC, it indicates that there is no more than one myeloma plasma cell for every ten thousand normal cells. A negative MFC result is called an Immunophenotypic Response (IR).  Say that fast 6 times.  I know that sounds like a big word, but it has only half as many syllables as supercalifragilisticexpialidocious.

I was pretty excited to find that I have now achieved IR, which is a deeper response level than CR or sCR.  Of course, it's obvious that the better the response level I achieve, the better prognosis I am likely to have.  The question, however, is how much better?

Investigators have been analyzing this question, and there are several important published results.  One particularly relevant 2008 study by Bruno Paiva et al tracked MM patients who had an initial induction therapy using novel agents followed by autologous stem cell transplant (ASCT):  Their conclusion was that "Multiparameter flow cytometric remission is the most relevant prognostic factor for multiple myeloma patients who undergo autologous stem cell transplantation".  

The results were dramatic.  Those that did not achieve IR had a median Progression Free Survival (PFS) of 37 months, while the IR group had a PFS of 71 months!  Furthermore, the median Overall Survival (OS) was 89 months for the non-IR patients, but still had not been reached after 10 years for the those who had achieved IR. (That means that more than half of them were still alive after 10 years.)

All of this sounds very encouraging for me, but there is a fly in the ointment or turd in the punch bowl (take your pick).  This same researcher also published a subsequent paper that analyzed the effect of both IR and high-risk cytogenic abnormalities on Progression Free Survival after stem cell transplants:
 One of the high-risk cytogenic abnormalities included was my t(4;14) translocation.  These results were not so encouraging.  They showed that even for those who achieved IR after transplant, high-risk patients were likely to relapse much sooner than normal-risk patients (2-3 years vs. 6 years).  The recommendations from this study were that high-risk patients should consider consolidation therapy following transplant.

Well, that's just what I did, and I am planning to continue maintenance therapy as well, which I hope will mitigate the high-risk effect of my t(4;14) translocation.  The known fact that Revlimid seems to contain the risk of the t(4;14) abnormality gives me some hope that I might still achieve a prognosis similar to those with a normal risk.  It remains to be seen.

In any case, I have decided to spend less time analyzing this and more time enjoying my life in remission.  (I can already hear the collective sigh of relief from my readers.)  So tomorrow, I'm going to go play golf.  Fore!


Thursday, September 27, 2012

Writer's Workshop

I have completed my first month of maintenance therapy on 10 mg/day of Revlimid.  Monday, we went back to DFCI for blood tests and my monthly dose of the bisphophonate, Zometa, to help build up my bones.  The blood tests results were fine, so I am doing well so far on the maintenance.  My white blood cell and neutrophil counts are still low, but those are normal side effects of the Revlimid.

I am no longer meeting with Dr. Richardson, but rather with his nurse, Mary McKenney, along with the clinical trial nurse, Muriel.  I miss not seeing Dr. Richardson on these visits, but the good news is that I'm doing well, so I don't need his expert intervention at this point in my treatment.  Furthermore, I don't miss whiling away the extra two hours or so in the waiting room every visit because he always runs late.

I verified with Mary and Muriel that my latest pathology results confirm that I have not only reached sCR, but also IR based on the flow cytometry results.  This is extremely good news, as I will explain further in a future post.

While at DFCI, I had the opportunity to attend the first fall meeting of the Writer's Workshop, which took a hiatus over the summer.  I am finding this to be a very rich and stimulating experience.  Amy Boesky, a professor of writing at BC, skillfully directs the discussions.  There were about a dozen attendees for the two-hour session, including three "old timers" from last year.

What interesting people and what stories they have to share!  Most are either battling cancer or are caring for a loved one who is.  Their stories are wrenching and compelling, from the woman who was recovering from breast cancer only to find out she has lung cancer, to the wife whose life has been upended by her husband's brain tumor, to the mother who suffers as her young daughter endures prolonged chemotherapy.  For most of them, writing gives them a means of catharsis and a chance to share their pain.  I feel humbled to be in their presence.  I am learning a lot from each of them, not only about writing, but about dealing with adversity.

I began attending this workshop in the hope of becoming a better writer as I embarked on publishing this blog.  While that is still a goal, I am finding that it is an enriching experience in its own right.  So far, I have combined attending this workshop with my appointments at Dana Farber, but I think I will make the monthly trip to Boston even if it doesn't coincide with my appointment schedule.

Our next writing assignment is to pick a place or a photograph that is particularly important to us, and write about what makes it meaningful.  I have no idea what I am going to write about, but I'll think of something...I hope.

Friday, September 21, 2012

Bone Biopsy Results

We are back from Pennsylvania, where we have laid my mother in her final resting place.  Her long wait and time of suffering and discontent is over.  While there will be some times of sadness as I resurrect fond memories or think of things I can no longer tell her or questions I can no longer ask, I am relieved that she is at peace.  I was there with her almost to the end, and I have no regrets.  I am also at peace with her passing.  I thank those of you who have responded with condolences.

As I mentioned in my last post, I have received the pathology reports from my latest serum and urine electrophoresis and immunofixation tests, as well as my bone marrow biopsy.  A major objective of my treatment protocols to date has been to achieve as good a response as possible, so let me review the criteria. I warn you that I'm going to throw a few acronyms at you, so bear with me.

The criteria for achieving Complete Response (CR) consists of all of the following:

  • Negative blood serum immunofixation
  • Negative 24-hour urine immunofixation
  • Less than 5% plasma cells in bone marrow
Normalization of the Free Light Chain (FLC) ratio (aka Kappa/Lambda ratio) may define a deeper complete response after therapy than by standard criteria of CR. A stringent Complete Response (sCR) requires normalization of the FLC ratio and absence of clonal plasma cells in the bone marrow in addition to the standard criteria for CR. A normal (FLC) ratio is between 0.26 and 1.65.  (As a reference point, when I was first diagnosed with MM, my FLC ratio was about 800.)

The use of multiparameter flow cytometry (MFC) on the bone marrow aspirate allows the definition of an immunophenotypic response (IR), which is a much more sensitive indicator of residual MM cells than the blood or urine immunofixation results.  IR has recently been accepted as the next level of response beyond sCR.  Study results have shown that achieving IR provides substantial benefits for extending Progression Free Survival (PFS) over CR and sCR.  The effect on Overall Survival (OS) is not as clear, but there hasn't been enough time yet to get definitive statistics.

Prior to my stem cell transplant, I believe I had achieved a Complete Response (CR).  My FLC ratio was 0.89, but there was still 1% plasma in my marrow, which may have been monoclonal and showed the possibility of persistent involvement by the MM.  The MFC results from February showed the possibility of minimum residual disease.

Subsequent to my ASCT, the serum electrophoresis and immunofixation results began showing a faint M-Spike, as well as a double IgA and IgG gammopathy.  I was quite concerned about this, but Dr. Richardson assured me that this was a transient effect from the transplant and should go away with time.  I was pleased to find that my latest serum and urine electrophoresis and immunofixation results showed no M-Spike and no monoclonal gammopathy, so the transient effect has disappeared, as Richardson had forecast.  Furthermore, my FLC ratio is still normal at 1.06.

The latest bone marrow biopsy results showed about 2% plasma in the bone marrow.  However, the MFC results showed the plasma to be polytypic rather than monoclonal.  The conclusion was that features of myeloma were not seen in the analysis!  Thus, there does not appear to be any indication of minimum residual disease.

I emailed Dr. Richardson to ask whether these results show that I have achieved sCR, to which he responded that I have.  Furthermore, the negative MFC result implies that I may have achieved IR as well! This is really good news.  It appears that the stem cell transplant followed by the consolidation therapy has in fact deepened my response.

If it hadn't been for my family crisis this past week, I might have been in a more celebratory mood. While every case is different, I have reason to hope that I may enjoy an extended period of remission from MM before it ultimately progresses.  By then, I hope either a cure has been discovered or more effective drugs have been developed to control it.  I'm very optimistic, but I keep my fingers crossed.

Monday, September 17, 2012


I apologize for not having updated this blog recently.  It has been an event-filled week.  I did get my pathology reports back from my latest serum immnofixation and bone biopsy tests.  The results were good, but this post is not about me.

This past weekend, we were in Greensburg, PA for a 70th birthday party for my high school class of 1960.  This event has been scheduled for many months.  My 94-year-old mother has been in an assisted living facility nearby.  Her condition has deteriorated since she broke her leg last November.  Two weeks ago, my brother, Terry, and I agreed to bring in hospice care to help alleviate her pain and keep her comfortable.

Fortunately, we were able to spend some time with her on Friday and Saturday.  It was clear that she was failing rapidly and that it would only be a matter of time.  I spent Friday all night in her room with her, and although she was only barely conscious of my presence, I'm glad I was able to be there with her.  On Saturday, most of her family had gathered around her, and I think that is when she decided to let go.

Yesterday morning, Terry and I went in to see her, and the hospice nurse said that the end was near.  We left to go prepare to come back later for the final vigil, but she chose otherwise.  Ten minutes after we left her room, she died.  I can't help but think that she went out on her own terms and at a time of her own choosing.

I will miss her greatly, but it with a great sense of relief that I know she is no longer suffering.  She had a long and eventful life, and her time had come.  It is not a time to mourn, but rather it is a time to celebrate her life.

It is also a great relief to me that she did not survive me.  That is the natural order of things.  This natural order was knocked awry when my younger brother, Michael, succumbed to cancer 5 years ago.  Mom's three sons were her whole life, and Michael's death was truly a tragedy.  When I reluctantly informed her of my cancer last February, I feared for her response.  To my surprise, she actually took it very well, and she rejoiced in the news of my good progress every time we talked.  Still, the specter of losing yet another son must have haunted her.  Terry believes that that is when Mom decided that she had to go, and indeed, she had been in decline ever since.

In the next few days, I will update this blog with details of my latest test results, but there is time enough for that.

Sunday, September 9, 2012

Health Check

Despite my MM, I seem to be healthier in some respects than I was before my diagnosis.  This may be due partly to my having shed about thirty pounds of excess weight, as well as my cutting down on alcohol consumption.  While some think that I am now too skinny (one even calls me emaciated), my current Body Mass Index is about 22.5, right in the middle of what is considered the normal range.  I don't think that's too bad, and I wouldn't mind staying somewhere around my current weight.  I still need to get back to the gym to start toning myself up, but that's another story.  I did sign up again for another year at Planet all I have to do is start going.

For years, I have been taking medication for high blood pressure and high cholesterol.  However, for the past year, my BP numbers have been consistently low.  I also had my cholesterol checked back in February, and those results were way down as well (chol = 133, HDL = 60, non-HDL = 73).  So around the end of July, I decided to go off my blood pressure and cholesterol meds to see what would happen.  I told Dr. Richardson, who suggested that I check it out with my PCP, Dr. Guidi, which I did a couple of weeks ago.  Since my BP was still low, Dr. Guidi suggested that I stay off the lisinopril and amlodipine, but check my blood pressure at home weekly.  If it goes back up, he may have me go back on half my normal dose (2.5 mg) of the amlodipine.  He also scheduled me for another cholesterol blood test at the end of August.  That test came back with excellent results, so I plan to stay off the simvastatin for the foreseeable future.  I am now down to taking only one of the four prescription drugs that I have been on for lo these many years (omeprazole).

Since I was getting the cholesterol blood test, I also asked Dr. Guidi to have my Vitamin D and C-Reactive Protein (CRP) levels checked.  I was a little concerned about the Vitamin D, since I'm taking 5000 units of Vitamin D3 daily, which is more that the maximum FDA-recommended dose. However, my Vitamin D level came back in the normal range, so that's OK.

As for the CRP, a research paper forwarded to me by my patient friend, Steve, has implicated elevated CRP in preventing anti-myeloma drugs from killing the MM cells.  However, my CRP level came back <1, which is very good.  So other than this pesky MM thing I'm dealing with, I seem to be in reasonably good health.

Another plus is that my hair is growing back in very nicely.  It's not as gray as it was before, and it's even curly now!  I haven't had curly hair since I was a kid.  Of course I hated it then, but now, not so much.  Our son, Brian, who is somewhat follically challenged, wondered what he would have to do to get a stem cell transplant.  ;-)  If I can get a decent picture, I may include it in one of my future posts.

Monday, September 3, 2012

Go West, Young Man

In my last post, I dramatically concluded that there is a connection between Lyme Disease and Multiple Myeloma.  Tada!  Well, maybe I was a bit hasty and jumped the gun just a tad.  Upon further reflection and analysis, I'm prepared to back down on that conclusion.

One of the problems with my previous analysis is staring me right in my reddened face from the table I included in my last post.  Notice that of the nine states I included in the Northeast US Region, New York and New Jersey have the highest age-adjusted MM incidence, but not the highest Lyme Disease incidence.  In fact, if you focus on those states in this region with the highest incidence of Lyme Disease (CT, ME, MA, NH, VT), the age-adjusted MM incidences are all below the national average of 6.0 cases/10K population.  Hmmm.  Now why didn't I notice that earlier?  Therefore, despite having more than 6 times the national average of Lyme Disease cases, there is no discernible increased incidence of MM for these states.  That pretty much throws both the correlation and causality arguments down the proverbial poop chute.  Waaah!

There's another small problem with my previous analysis.  The CDC data show that the West Region has lower incidence of MM than the other regions of the country.  I decided to check out the statistics for some other common cancers, such as breast, lung, and prostate cancer.  Guess what?  The same pattern emerges, where the Northeast Region has the highest age-adjusted incidence and the West Region has the lowest.  Why is that?  Maybe the formulas for age adjustment are out of date, since they use the age demographics from the 2000 census.  Perhaps the Northeast Region has gotten older since 2000, so the adjustment may under-correct for the demographics for all the cancer types.  Maybe it has something to do with the pollution from all the power plants in the rest of the country that rains down on the Northeast.  Who knows?  In any case, the West just seems to be a healthier place to live.

So I'm now ready to make another suggestion. If you live in New York or New Jersey, save yourself.  Move to California now!  ;-)

Tuesday, August 28, 2012

Myeloma-Lyme Connection? I Say Yes!

Yesterday we were at DFCI for my blood tests and the test that shall not be named.  Actually, the bone marrow biopsy (oops-I just named it) wasn't so bad.  They perform thousands of these at DFCI, so they really know what they are doing and how to minimize the discomfort.  That's not to say that I would volunteer for this on a monthly basis.  No way, Jose.

The biopsy results won't be back for another week or so, and I fervently hope that I haven't gotten any worse since my last biopsy in February.  That would be kind of disappointing considering what I've been through since then.  I fully expect that the flow cytometry results will show some minimum residual disease, since my recent immunofixation results keep showing a trace of Lambda monoclonal paraprotein in my blood.  But that's OK.  I've been told that this is normal and that transplant patients usually show various traces of monoclonal protein after the procedure.  As long as the plasma level in my bone marrow is less than 5%, I will still be in Complete Response (CR).

My blood tests came back pretty good, although my WBC and neutrophils are still somewhat low from the consolidation therapy.  As of now, I am on maintenance therapy consisting of 10 mg/day of Revlimid every day for the next three months.  After that, they may increase my dose to 15 mg/day, depending on how I respond to the 10 mg dose.  I don't have to go back again until Sept. 24, when I will get another blood draw and an infusion of Zometa.  I should be on a monthly schedule of DFCI visits from now on, as long as I stay in remission.

In a previous post, I promised to revisit the issue of whether there is a potential link between Lyme Disease and Multiple Myeloma.  Some of my anecdotal evidence from other patients (including my own experience) indicate some possible connection, but I wanted to find some hard data that might reveal whether there is a statistically significant correlation.  My initial blog post on this subject was a bit fragmented and didn't include the best data sources.  I did a Google search to see what other studies might have been done on this topic, but all I was able to find were some more anecdotal accounts of a possible link.  So I guess the burden is on me to carry the torch here.  By the way, since Lyme Disease is far more prevalent than MM, I assume that Lyme may possibly contribute to the pathogenesis (e.g., causal mechanism) of MM rather than vice versa.

I've now taken a little deeper look into this subject.  Lyme Disease is a fairly recent phenomenon, with the number of cases increasing dramatically over the last fifteen years or so.  If there is some correlation with MM, one would expect that those states or regions that have an unusually high incidence of Lyme Disease might start to show some increase in the incidence of MM over time.  One good source I used is the CDC website that tracks Lyme Disease case and incidence data by state and year:  Another good source is the CDC National Program of Cancer Registries (NPCR), which provides age-adjusted myloma statistics:  In order to compare MM incidence from one region or state to another, it is necessary to age-adjust the raw incidence data to account for age discrepancies from one area to another.  This is because MM primarily affects the older population.  For the Lyme disease statistics, I could only assume that they were age-independent. 

The good thing about the NPCR data is that they include the 95% confidence intervals for the state-by-state and regional MM data.  I wanted to select a region with a large enough population to provide statistically significant results.  It was therefore convenient for me to select the Northeast US region (New England and Mid Atlantic), consisting of the nine states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont, New Jersey, New York, and Pennsylvania.  The NPCR data conveniently provides average age-adjusted MM incidence for this region and the total US, along with confidence intervals.  I have summarized these data in the table below.  I wasn't able to get exact correspondence for all of the years for comparison, but I don't think that makes a big difference.

It is interesting to note that this 9-state region has about 18% of the US population, but accounted for 75% of the Lyme Disease cases in 2008!  The Lyme Disease incidence for this region was 39 cases/100K population, which is over 4 times the national average of 9.3 cases/100K.  Looking at the MM incidence, the age adjusted incidence for this region for 2008 was 6.0 cases/100K, with a 95% confidence interval of 5.8 to 6.2.  The US total age-adjusted MM incidence for the same year was 5.6 cases/100K, with a 95% confidence interval of 5.5 to 5.6.  I consider these results to be conservative, since a more accurate comparison would be between the 9-state region and the remaining 51-state region, not the US as a whole.  That would only increase the discrepancy from the numbers I am presenting here.

My interpretation of these results is that one can say with more than 95% confidence that there is a higher probability of contracting MM in this 9-state region which has a high incidence of Lyme Disease than in the US as a whole.  To me, this seems to establish a statistically significant basis for concluding that Lyme Disease is a contributor to the pathogenesis of Multiple Myeloma.  There, I've said it! 

Now before any of you start sending my name into the Pulitzer or Nobel Prize nominating committees, just remember that figures don't lie, but liars can figure.  I'm not sure that I have accounted for all possible variables that might influence these results.  There may be other regional variations that I didn't consider that might possibly account for the observed variations.  Someone researchers may have already looked at this and dismissed it for one reason or another.  I'd be curious to know about any studies on this topic that I may have overlooked.  I would also appreciate any comments or suggestions on my analysis approach, methodology, or any glaring errors that I may have made.   Furthermore, I welcome any personal stories of MM patients who may also have a history of Lyme Disease.

State Population Lyme cases Lyme MM cases Age-adjusted MM incidence

(millions) 2008 Incidence 2011 MM incidence 95% conf.

(cases/100K) interval

Connecticut 3.6 2338 64.9 250 5.3
Maine 1.3 780 60.0 110 5.5
Massachusetts 6.6 3960 60.0 440 5.5
New Hampshire 1.3 1211 93.2 90 5.8
Rhode Island 1.1 186 16.9 70 4.9
Vermont 0.6 330 55.0 40 4.7
New Jersey 8.8 3214 36.5 660 6.1
New York 19.4 5741 29.6 1620 6.7
Pennsylvania 12.7 3818 30.1 990 5.5

Regional Totals 55.4 21578 38.9 4270 6.0 5.8-6.2

US Totals 311.6 28921 9.3 20520 5.6 5.5-5.6

% of US totals 17.8% 74.6%