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Manhattan Tales – The Good, The Bad, And The Ugly

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Published: Feb 28, 2013 12:52 pm

The last three months have been extraordinarily varied in quality of life for me, reminding me of the title of an old Clint Eastwood movie, “The Good, The Bad, And The Ugly.”

My good days have been delightful. On my bad days, I've been challenged by a virus or stomach issues. And on my ugly days, I’ve been beset by fevers, coughs, and even worse stomach issues.

It might be a bit of an exaggeration to describe the initial few years of my treatment as a honeymoon, but they certainly seem easy in comparison.

I’m hopeful this trying period will end soon with the arrival of spring.

Since I haven’t written a column in a few months, here’s a brief recapitulation, which will help me (and all of you) get our bearings.

I was diagnosed with multiple myeloma three years ago, in January 2010.  I started out with a treatment of Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasome (Decadron), and I achieved “very good partial remission” in three months.  At that point, I developed painful neuropathy, and we dropped Velcade.

The dexamethasome, as a practical matter, precluded me from working, and hence I retired in July of 2010.  I remained on the Revlimid and dexamethasone through January 2012. In March 2012, I had an autologous stem cell transplant (see my related Beacon column).

I was substance free (more precisely, chemotherapy free) for the next nine months, but, alas, my defective plasma cells started to multiply.  By early November, my post-hurricane Sandy lab numbers were not at all good.  After discussion with my doctor and wife, I decided to enroll in a clinical trial with a monoclonal antibody that I could start in January.

December turned out to be the first of several difficult months.  I went to a wonderful very large birthday party for former New York City Mayor Ed Koch.  These parties have been given annually by Mayor Koch’s col­leagues as a celebration for him and as a reunion for his former employees.  Just two days prior to the party on December 12, the Mayor had emerged from the hospital, where he had been treated for the flu and pneumonia.   Doctor’s orders notwithstanding, he insisted on attending the festivities.

The party was great, and Mayor Koch said he wouldn’t have missed it for anything.  But the former Mayor died of congestive heart failure a few weeks later.  Yet, with his typical timing and style, he died the same day a documentary about him was released in New York City movie theaters, chronicling the ups and downs of his political and post-political careers.

Although attending the reunion birthday party was a great treat for me as well as Mayor Koch, attending such a large party in the height of the flu season may have been unwise for me.

Within three or four days of attending the party, I came down with a flu and chest infection.   It took several weeks to recover, but by New Year’s, I started traveling around the city again.  I even returned to the gym once or twice for a swim and a light workout.

I started on the clinical trial with the monoclonal antibody in January.  The monoclonal antibody – derived in part from mouse cells – is an “immunoconjugate.”   The immonoconjugate consists of two parts, a monoclonal antibody and a cancer killing (cytotoxic) agent.  The monoclonal antibody attaches to cells that have a surface protein that the antibody recognizes.  The cytotoxic agent activates when the antibody attaches to the surface cell proteins, enters the cell, and destroys it.

It is hoped that this therapy will destroy enough of the myeloma plasma cells in my body so that healthy plasma cells will have room to multiply and perform their normal function of fighting infections.

Promptly after my first monoclonal antibody treatment, ugly days began.  I developed yet another chest infection, this time accompanied by chills, nosebleed, and a high (but mercifully brief) fever.  My body was singularly unhappy for the next ten days.  The next antibody treatment was postponed while I was given antibiotics and an opportunity to recover.

Once again, I was struck with the care and concern exhibited by the nurses and staff at the cancer center.  And I am also getting great treatment at home; I do pity, but am and will be forever in awe of, my wife and the patience she has in dealing with a not-so-happy companion.

The antibiotics seemed to do the trick, and my body started to recover while the viral symptoms abated.   But I have started to become a lot more cautious.  I am, at least until the myeloma becomes less active, avoiding all crowds.  If the subways are to be used, I wait for an uncrowded car, or wear a face mask, and use a hand antiseptic immediately upon leaving the subway.

The face mask is a pretty unusual fashion accessory on the New York City subways, but it enables me to have some mobility.  And, much to my delight, during the last two weeks my doctor has permitted me to return to swimming.

Just as I found that swimming provided temporary relief for my neuropathy, which substantially abated with the passage of time, swimming also helps me with the nausea that is a side effect of the monoclonal antibody treatment.  The cold water and the physical activity provide a welcome distraction and actually seem to ameliorate nausea and energize me for hours afterward. My speed through the water is very slow, but at least I am moving, and perhaps my stamina will return with the passage of time.

I am also healthy enough to complete the 25 minute walk through Central Park from the subway to and from the cancer treatment center, which I visit an average of twice a week.  This involves a walk around a small lake, Harlem Meer, which is partially frozen this year.  In the open areas of the water, swans, geese and ducks spend the winter and seem quite happy.

My trek also has me walk through a gated and well-tended conservatory garden where even on the cold winter days numerous birds, including bright cardinals, blue jays, robins and chickadees, feed on seeds and on the remaining crabapples.

My days of illness have sensitized me to the beauties of nature.  I can’t say that I enjoy my trips to the hospital, but I do enjoy my walks on either end, and the bracing cold air, like the water in the swimming pool, is a tonic for the nausea.

I will find out in a few weeks whether I am to continue on the monoclonal antibody therapy or switch to another treatment.

Meanwhile, I experiment with various combinations of anti-nausea medicines and hope that this phase of the myeloma will soon be over.

Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .

Photo of Stephen Kramer, monthly columnist at The Myeloma Beacon.
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5 Comments »

  • Nancy T said:

    Steve, you situation is a bit similar to my husband's. He did not get a good response to his SCT either and his Kappa light levels are now soaring. He is refractory to revlimid as well. We are also considering clinical trials for him. I am wondering exactly which monoclonal antibody you are taking? SAR 650984 is the only one available in our area. Also where are you being treated? I'll be eagerly watching your progress. I hope the antibody does the trick. Nancy in SF Bay Area, Caregiver

  • Jan Martenson said:

    Very much good health and I say luck or good blessings to you. Keep it up...keep up the good work and exercise...which I am trying to increase also!

    Jan
    dx 1/2011
    no SCT yet!
    but soon!

  • nancy shamanna said:

    Hi Stephen, Thanks for sharing your last three months with us here. Hope the bad side effects abate, you can avoid infections and stay well as we head into another spring. As well as taking strong anti nauseant medications when I was taking Velcade, I found that taking anything with ginger in it would help to quell that. Ginger tea, candies, candied ginger...it's all good.
    Nice to hear your descriptions of the birds who migrate through or over winter in the middle of NYC. Here our smaller river, the Elbow is now clear of ice but the Bow is still iced over, but your can see the river flowing quickly underneath the ice. Saw a pair of Canada Geese last week, there are flocks of waxwings, and yesterday had a lynx in the backyard. That's a first and I had never seen a lynx in the wild, let alone in my garden!! I noticed fewer rabbits lately!

  • Cynthia Chmielewski said:

    Wishes for good news. I love that walk thru Central Park from the subway station too!

  • Steve said:

    Hi Stephen...sorry to hear of your recent health challenges...here's to the new monoclonal antibody therapy helping you regain your health!

    Best,

    Steve

    p.s. -- I too take every chance I can find to be outdoors...I even enjoy mowing the grass these days! :)