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Manhattan Tales: Spring Awakening

By: Stephen Kramer; Published: May 23, 2013 @ 1:44 pm | Comments Disabled

One of the advantages of living in the U.S. north­east is the chance to ex­peri­ence the change of the seasons. This year, the arrival of spring coin­cided with a new medical regimen for me and what has seemed like a rebirth of my own life.

As I described in my April column [1], this past win­ter was the season of my dis­content. In less than three months, I experienced two bouts of pneu­monia. I was at the hospital at least once a week, and I had near constant gastric distress. I tried hard not to com­plain too much, but the fact is that my life was really sub­sumed in my disease.

The approval of Pomalyst [2] (pomalidomide) by the FDA in February of this year and the commencement of my treatment with it in early March were truly a watershed for me in my myeloma-infused life.

While I appear to be one of the relatively few patients who is experiencing a good deal of peripheral neurop­athy (pain, tingling, and loss of sensation due to nerve damage) from Pomalyst, neuropathy is a small price to pay for this extraordinary new analogue of thalidomide.

My M-spike and other myeloma markers plummeted immediately within days of my first dose.

Lyrica (pregabalin) is keeping the neuropathy under control. And my swimming regimen continues to help me break through the malaise that I experience a few days each month under this drug regimen.

And though I fainted a few times in restaurants and had to be rushed to the hospital by ambulance with a very low pulse rate and blood pressure, this “complication” has been diagnosed as a short-term side effect of dexamethasone [3] (Decadron) that can be treated with “rescue” cortisone.  Apparently the dexamethasone was telling my endocrine system that it could “go to sleep.”  My body disagreed, but luckily there appear to be no lasting side effects.

I continue to be astounded at the progress in drug development for myeloma. I read in a recent article that while multiple myeloma constitutes 1 percent of cancers, approximately one-fifth of recently approved cancer treatments have been for myeloma.

Pomalyst, the medicine I am now on, is itself the third drug in the thalidomide [4] (Thalomid) family that has been approved to treat myeloma in the last seven or eight years (its predecessors having been thalidomide itself, which was approved for multiple myeloma in 2006, and Revlimid [5] (lenalidomide), also approved in 2006).

This is a pretty amazing record for thalidomide, a drug that caused ghastly birth defects when it was first introduced more than 50 years ago, and which in the 1990s had been approved for use, under very strict con­trols, for the treatment of leprosy.

In addition to the thalidomide derivatives, two proteasome inhibitors, which interfere with myeloma cell pro­duction, have also been approved: Velcade [6] (bortezomib) and Kyprolis [7] (carfilzomib), the latter having been approved last August.

If Pomalyst doesn’t put me into full remission, I expect Kyrpolis will be the next medicine I try.

And should neither of them work, a third approach to treatment – targeted monoclonal antibodies – is yet another active subject of research and clinical trials. Monoclonal antibodies recognize proteins that are found on the surface of myeloma cells.

When it became apparent to the medical team that works with me that the stem cell transplant I had in March of 2012 was not having the desired effect, I enrolled in a clinical trial involving one of those monoclonal anti­bodies early this past winter.

Although I personally could not tolerate the particular drug I was on, there is a great deal of promising re­search that indicates that monoclonal antibodies will provide another breakthrough in treating this disease.

So spring time is proving to be an optimistic time for me this year. There certainly appears to be good cause for hope that the researchers and scientists will continue on getting myeloma under even better control.

And even though I still occasionally have a few days that are difficult, most of the time I feel strong and look forward to and am excited about my own health and my life with my family. I am even considering making a stab at returning to bicycling and doing some volunteer work with my former colleagues in New York City gov­ernment.

Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here [8].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2013/05/23/manhattan-tales-spring-awakening/

URLs in this post:

[1] column: https://myelomabeacon.org/headline/2013/04/25/manhattan-tales-breaking-through-the-pain/

[2] Pomalyst: https://myelomabeacon.org/tag/pomalyst/

[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[4] thalidomide: https://myelomabeacon.org/resources/2008/10/15/thalidomide/

[5] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[6] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[7] Kyprolis: https://myelomabeacon.org/tag/kyprolis/

[8] here: https://myelomabeacon.org/author/stephen-kramer/

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