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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!  ;-)