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Manhattan Tales: Summer Interlude Interrupted

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Published: Sep 30, 2013 11:39 am

Last March, after an unsuccessful three-month period on a clinical trial of a monoclonal antibody, I began a new regimen of Pomalyst (pomalidomide, Imnovid) and the steroid dexamethasone (Decadron).

After a bumpy beginning with some dexamethasone-related side effects, things went very well. My wife and I referred to it as a “honeymoon” interval – we knew it would end, but it was fantastic while it lasted.

I had a great summer. I swam several times a week, and even swam a mile across the Hudson River in an organized swim event in July. My myeloma counts were lowering, and I felt strong. Side effects were minimized with Lyrica (pregabalin) for the neuropathy and hydrocortisone for adrenal insufficiency on the days I did not take the steroid. And though the neuropathy in my feet still precluded any lengthy walks, the swimming always seemed to minimize the neuropathy and put me in a great mood to face the day.

Though my white blood counts were dropping (an expected side effect of Pomalyst), I had no colds or other health problems. Bi-weekly doses of Neupogen (filgrastim) increased white cell production, and monthly gamma globulin infusions kept my immune system functioning.

Alas, as we knew it would, the honeymoon ended.

Out of the blue, a couple of weeks ago on a Sunday afternoon walk, my bones started aching in an entirely new way. By the following Friday evening, a high fever emerged that required a lot of intense medical attention. I was admitted to hospital for IV antibiotics to treat the infection, most likely pneumonia.

Luckily my body quickly responded to the antibiotics, and I was able to leave the hospital after three days. The myeloma treatment was halted to let my body’s immune system adjust.  A new regimen will start in a few weeks.

Three days in the hospital did not seem to weaken me too much. I was allowed to walk around the halls. I even got up one morning to watch the sun rise over the housing projects near the hospital; in the distance, the red disk hovered over one of the bridges connecting Manhattan to Queens. It was quite a sight, one that I certainly can’t see at home from my west-facing windows in lower Manhattan.

The suddenness of the switch from someone in apparent great health to an ailing patient was quite a shock.

Even though I never forgot that I had multiple myeloma even on my best days this past summer, and even though I had been told that I was unlikely to get more than five or six months help from the current Pomalyst treatment, I was hoping that the transition to a new medical regimen would have gone a bit more gently.

But intellectually at least, I know that I have no reason to complain. Six excellent months are six excellent months. Certainly better to have had a great six months than not to have had them, even if the glorious status had to end up in the hospital. And since I am one of those patients who has never approached a complete remission, I have never been able to view my disease as a chronic one that is being held in check. It is always the “elephant in the room” no matter how well I am feeling, physically or emotionally.

As a result, I have to take each day for what I know it is – a gift. And, I know that the medical science in this field is progressing at an incredibly rapid pace, even faster than the pace of my disease. There are both approved drugs and clinical trials of others in my immediate future, none of which seemed even on the horizon when I was diagnosed four years ago.

Meanwhile, I’m off treatment for a few more weeks, and the doctor has tentatively allowed me to take a two-week trip abroad with my wife before starting the new regimen.

And the suspension of the treatment had an immediate and unanticipated side effect. The suspension immediately lowered my neuropathy, which I had come to live with and never really thought would go away.

In addition, much to my surprise, when the treatment stopped, I felt as if a thin glass wall between me and the world had disappeared. I wasn’t consciously aware of this cognitive side effect of Pomalyst.  Nevertheless, there was a marked and definite change when I stopped taking the medicine. The world seems sharper and more in focus. Maybe this will be an even longer honeymoon than I experienced this past summer.

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 for 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 shamanna said:

    Another great column, Stephen. Hope that you recover well from the pneumonia. Nice to have a break from chemo drugs for awhile, and wishing you and your wife a nice holiday also! Your writing is so descriptive that I can really picture New York ... We have had several interesting visits there over the years.

  • April Nelson said:

    Powerful writing. Savor the days--and I hope you get that trip abroad in too!

  • Christina said:

    Have a great trip abroad and I know you and your wife will savor every moment.

  • Snip said:

    At times, I have the thought that "... I have to take each day for what I know it is – a gift." almost makes having MM worth it. Life is so much more precious to me now than it was pre-dx 3 years ago.

    Good read, Stephen. Keep up the positive vibe. It is probably as strong a medicine as all the cool molecules they are working on.

  • marty melley said:

    hey stephen

    sorrey to hear your CT did not work out for you.
    one day out of the blue my oc ask me if i would be interested in a CT since my numbers started to go up. the CT was a platform from a company in theUK called Adaptimmune and they were going with genetically engineered t-cells to hunt down myeoloma cells. i had to have certain blood markers which i had and 21 months ago after 2nd transplant they gave me these cells [my own from 1st transplant] and my numbers have gone down and i remain stable for the last 21months with no maint. drugs. my oc is confident that the stablization or cure will come from our own cells and he continues to this day to try to make it happen with his research and confidence.