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Monday, January 27, 2014

It's Been Too Long

Yes, it's been too long since I have posted an update to this blog.  It's not as if nothing has transpired, but I just haven't felt the urge to write until now.  I'll explain my sudden enthusiasm to express myself later.

Last week I had my annual visit to my dermatologist, Dr. Reohr.  I had suspected there would be some issues, as I have had a couple of open sores on my face and right arm that haven't healed over the last couple of months.  Sure enough, she found three areas that were worthy of taking biopsies: my face, my arm, and back of my neck.  It will be a couple of weeks before the biopsy results are back.  If any are positive, I will be back for appropriate surgery.  I've been through this more than a few times before, so it's really no big deal.  If any of the biopsies are positive, I'm pretty sure they will be either basal cell or squamous cell carcinomas, which are easily treated.

Dr. Reohr had an intern following her around that day, and I think she wanted to impress him with her thoroughness.  So she decided to mercilessly attack every possible unexplained protuberance or keratosis on my face.  (Keratoses are either benign or pre-malignant growths on the skin.)  She grabbed a metal bottle and peppered all over my face with freezing sprays of liquid nitrogen, called "cryogenic surgery".  Thanks, doc.  Not only was that not a lot of fun, but my face now looks like I stuck it in a meat grinder.  Fortunately, the scabs are just starting to fall off.  Anyway, with my history of skin cancer, I have to be diligent in keeping on top of this stuff.  And yes, I regret all those times I let myself get burned to a crisp on a beach.

In December, I blogged about Betsy and Joel, whom I met at the Patient Symposium at the Farber.  Their son, Ethan, has been diagnosed with MM at the tender age of 22, and is scheduled for a stem cell transplant in May.  Yesterday, Gretchen and I met the two of them for lunch in Portsmouth, NH.  They are a delightful couple and we had a wonderful lunch together.  My heart goes out to them for the fear and uncertainty they are dealing with.  It's one thing for an old fart like me to contract MM, but a young kid?  Not fair!  Anyway, he seems to be doing very well with his treatment so far.  Betsy and Joel are hosting a fundraiser for the Jimmy Fund next week at a restaurant in Kittery, Maine.  Gretchen and I plan to attend, and we hope to meet Ethan there.  Just before his bone lesion problems with MM surfaced, Ethan ran a marathon in Spain last summer.  As a tribute,  his mother, Betsy, is planning to run the Boston Marathon this year to raise money for the Jimmy Fund.  Go Betsy!  I have to say, with this MM journey, one really meets some wonderful people along the way.

Now I will explain my sudden impulse to update my blog.  Today I went to Farber, but it was to nourish my mind, not my body.  I attended the monthly meeting of the Writing Workshop, hosted by Amy Boesky, a literature professor at Boston College.  This is my third year of going to this workshop.  I can't tell you how humble and grateful I am to be able to share this time with this talented and inspirational group of cancer survivors or caregivers.  Today, there were about a dozen people there, and I left there feeling very enriched in my life.

The workshop is a challenge, because Amy gives us a prompt, usually based on the premise of a poem, and asks us to write something addressing the prompt in five minutes.  Today, the prompt was from a wonderful poem by Billy Collins, entitled, "Consolation".  The prompt was to think of something considered pleasant that we don't have to do, and counter it with being that it is enough to be doing what we are doing.

I volunteered to be the first to read what I wrote.  I volunteered first for a reason.  I didn't want to follow someone with something really good to make a bad comparison.  Anyway, here it is:

"How fortunate I am not to be at the indoor golf facility today, launching golf balls into a screen using a simulated golf course.  I glad I don't have to be practicing my new golf grip, stance, or follow through that I just learned at my lesson last week.

Instead, I am enjoying the cameraderie of my fellow workshop attendees and was able to catch up with Eric over lunch, rather than trying to figure out why I still can't control my wicked slice.

And too, I am relieved that I don't have to be at the Peabody Essex Museum today viewing the new exhibit featuring birds and guitars, marveling at the musical cacophony that they randomly produce.

It's better that I am sitting here in the comfortable ambiance of Amy's workshop, trying to do the impossible:  write something meaningful in five minutes."

I'm glad I went first, because there were some beautiful and inspired writings by some of the others.  Most were much deeper more serious than my flippant entry.  Some people had offerings that were prepared already.  One contribution from a previous seminar was from Phil, who is about to enter Divinity School.  He described his journey trying to help people and to understand God.  It was so powerful and moving that when he finished, no one could speak:  most of us were fighting back tears (me too).  And I'm not at all religious.  Wow!

Anyway, I learned a lot today and was inspired by this experience to keep writing and to update my blog more frequently.  Even if I don't have anything important to say about my MM, maybe I can offer something to those who read my blog that they may find of interest or of value.

Thursday, January 16, 2014

Maintenance Cycle 18

I have now made it almost a year and a half on my maintenance schedule following my ASCT.  So far, so good!  My blood tests at the Farber last week confirmed that I am still in remission.  I also submitted a 24-hour urine sample for the first time in 4 months, and that also showed no monoclonal gammopathy.  If I can make it another 18 months without a relapse, then I can go off all medications.  That's something to look forward to, but I don't want to get ahead of myself.  I'm just going to take this month by month.

Everything else seems fine except for one thing.  Based on my continued anemia, I had an iron blood test done last week.  The results weren't great:

                    Test                                                 Result                        Normal Range

                    Iron                                                        24                                49 - 181                                Total Iron Binding Capacity (TIBC)      507                              250 - 450
                   Ferritin                                                    10                                 20 - 400

As you can see, I'm definitely iron deficient.  The puzzling thing is that men don't usually lose iron that much, especially red meat carnivores such as myself.  In fact, I just devoured a 12 oz. slab of prime rib for lunch today.  Yum!  And as Popeye would say, "I eats me spinach".  Only 3% of men suffer from iron deficiency, usually caused from some source of bleeding.  So Mary and Muriel asked me whether I have had any excessive bleeding.  No, not that I have noticed.  There are several things that could cause excessive bleeding, such as for instance, colon cancer!  That was a scary thought.  I then remembered Dr. Richardson telling everyone at last year's Patient Symposium to get a colonoscopy because of the secondary cancer risk from Revlimid.

My memory being what it is, I couldn't remember how recently I had undergone a colonoscopy.  They are unpleasant enough that you'd think I'd remember, but duh!  Anyway, afterwards I was relieved to find out that I had one just this past April (thanks to Dr. Richardson's prodding), and the results were great--no polyps found.  I really should have remembered that, especially since I even blogged about it at the time.  But no.  In any case, that set my mind at ease on that score. 

Anyway, I am now on iron pills.  I am taking 150 mg of Ferrex twice a day.  It will be interesting to see if this helps to improve my chronic anemia and gives me a little more energy.  I'll get tested again in a couple of months to see if there is any improvement.

Last month, I posted an update on the Patient Symposium at the Farber.  I included some results showing a need for more aggressive treatment of Smoldering Multiple Myeloma (SMM) based on several clinical factors.  I just read an interesting abstract published in this month's issue of Blood, which expands on this topic.  Here is a link:

The bottom line is that using gene expression profiling based on a 70-gene signature can independently predict those SMM patients who have a 67% chance of progressing to active MM within 2 years.  So a lot of progress is being made on determining which patients with SMM are candidates for early intervention.  This type of screening will soon make it into the main stream and may lead to improved outcomes for those who can be diagnosed early.

Monday, January 6, 2014

Cancer Funding Boost

One of the casualties of the budget battles being waged in Washington has been Federal funding for cancer research.  Funding has been slashed for a number of research programs, and there is little hope for year-to-year continuity from our disfunctional government to support important research initiatives.

I was heartened to read in today's Boston Globe that the Daniel P. Ludwig Trust has announced a gift of over half a billion dollars to six cancer research organizations in the country.  Two of them, Harvard Medical School and MIT, have received $90 million each to sustain cancer research over the next several years.  Here is a link to the article:  harvard-mit-cancer-research-centers-receive-grants.

As the article states, "The gifts are timely for scientific and political reasons. Advances in understanding cancer at a molecular level have given scientists and physicians powerful insights that are helping them develop better and more precise ways to diagnose, treat, and monitor cancers. The money, which will be added to the centers’ endowments and should provide each institution a steady stream of roughly $4 million to $5 million a year, also arrives at a moment when federal funding for biomedical research has been cut and become increasingly uncertain, diverting many scientists’ attention toward trying to raise money to keep their labs afloat."

Each of these centers will have a different research focus.  Harvard (which includes Dana Farber), will draw on its network of hospitals and emphasize translating basic research advances into the clinic.  The Harvard center will also focus on providing a deeper understanding of the causes of therapy resistance.

Quoting from the article, "At MIT, biologists and engineers will probe metastasis, the process by which cancers spread throughout the body, which accounts for the vast majority of deaths from the disease. Instead of studying one particular type of cancer, scientists at the center will focus on trying to figure out the series of molecular events that cause cancers of all kinds to become aggressive and invasive."

"The other centers will focus on cancer stem cells that may seed tumor growth, therapies that stimulate the body’s immune system to defeat cancer, how to interfere with the spread of cancer, and the use of genomics to detect and prevent cancer."

This is good news!  These are exactly the areas of current research that need to be actively pursued to eventually conquer this "Emperor of All Maladies".  While these funds aren't specifically allocated to Multiple Myeloma research, recent studies have shown that there are some common features to many cancers, and developments against one type may have crossover benefits to other types. 

I expect that Ken Anderson and Paul Richardson will snarf up some of this new funding to continue and expand their MM research at the Farber, both in the lab and in the clinic.  I'm optimistic that we will see some further advances in the fight against MM sooner rather than later.