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Manhattan Tales: Spring Awakening

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Published: May 23, 2013 1:44 pm

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, 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 (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 (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 (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 (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 (bortezomib) and Kyprolis (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.

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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6 Comments »

  • Eric Hofacket said:

    Stephen,

    It is really good to hear that Pomalyst is working for you. I have been following your postings and have seen that you SCT was difficult and not as successful as hoped for and you have been struggling with drug resistance or side effects with treatments. It must be real relief to find that Pomalyst is showing good results.

    Back when I was being treated with Velcade and high dose Dexamethasone I started blacking out when standing up. I had developed an orthostatic blood pressure condition where my pulse and blood pressure was fine lying flat, my blood pressure dropped a little pulse increased a little when sitting up, and my blood pressure plummeted if I stood up to low 70s over nothing and pulse increased to over 160. I was hospitalized for a week because of this. It was believed the condition was caused by Velcade damage to the peripheral nervous system that controlled that contraction of the muscles around the blood vessels in the legs that when standing keep all the blood from rushing into the legs, this autonomous reaction did not seem to be happing in me. I was taken off both Velcade and Dexamethasone and have not received any sense. After reading you experience now I am not so sure that was the real cause. They had an Endocrinologist look at me but did not find anything of significance that they could relate back to Dexamethasone as the cause. I had so many drugs in me though it was difficult to figure out what all was doing what though. Do you or did you have an orthostatic blood pressure condition that was causing your fainting?

    Velcade dexamethasone worked really well for me though, I achieved a very good partial remission with this treatment regime. My myeloma had not become resistant to Velcade treatment yet when I stopped it, but with the history of orthostatic blood pressure associated with the Velcade treatment and the lingering permanent peripheral neuropathy I still have, I do not know if I will ever be able to use Velcade again if I relapse except for dire circumstances. It is good to hear that with your similar circumstances with neuropathy and drug resistance, there are still medications that can still be very effective at treating myeloma. I doing very well now and swimming about 8 to 12 thousand yards a week. When I had bad neuropathy I found swimming really helped a lot. Anyone reading this with bad neuropathy like Stephen I recommend giving swimming a try, it helped with the pain far better than morphine did.

  • Stephen Kramer (author) said:

    Eric, the fainting, insofar as a cause has been isolated (and insofar as I understand it), probably is dexamethasone related. The dexamethasone that I take with the pomalyst tells my adrenal gland that it doesn’t need to produce cortisone, and as a result the adrenal gland goes “to sleep.” After I’ve stopped taking the dex, the adrenal gland doesn’t wake up quickly enough to give me cortisone when I need it, and thus I faint (i.e. have orthostatic hypotension). Hopefully this will be managed by taking hydrocortisone pills for a day or two after I’ve stopped taking the dex — exact dosing, frequency and amounts are yet to be determined.

  • Stéphane said:

    Hello Stephen,
    Your last article was very impressive to me. End of April I spent one week in NY with my family to visit and enjoy this extraordnary city so different from our european cities. One afternoon, after some hours in the huge and magnificent MET, we decided to have a walk in Central Park and see the John Lennon Mémorial on the west side. At that moment I thought about you and expected to see you even if it was very unlikely. You often tell us about your walks in Central Park between your home and the hospital, admiring spring coming back on Big Apple. Then after this marvellous week, returning in Lille, North of France, I learnt a bad news: myeloma was back although I felt good. Big delusion. Back in the hospital to meet the physicians. One week after, my hamatologist called me back: we want you to be on Pomalidomide as the drug is now available in France. Then we are going to look for a donor to envisage end of this year a donor stem cell transplant. I started Pomalyst yesterday and I am full of hope but with fears about the next step. After two fantastic years of remission (35000 miles in plane and car travelling with my wife through Europe, Marocco and NY)facing this new myeloma wall is a cold shower !

  • Stephen Kramer (author) said:

    Stephane: Well, we might have “passed in the night” in Central Park, as I do wander about beyond the Harlem Meer in the northeast corner. I know the John Lennon Memorial and Strawberry Fields very well, and I’m a member of the Met (which would take a life time to get to know) and several of the other museums on both the east and west side of the park. Best of luck with the Pomalyst — it does have its side effects, particularly when combined with the dexamethasome (as it invariably is), but it seems to have a great response rate.

    Steve Kramer

  • Nancy Shamanna said:

    Thanks for sharing your journey of this spring. I really hope that all is going better for you now…you have a great attitude towards the problems that myeloma can bring!!
    We found ourselves in your fair city also recently for a couple of daze. Have you tried walking down that new above ground park that used to be an elevated train line (the El?). That is a lovely walk and stretches on for a few km. from the Lincoln Tunnel area to Greenwich Village.
    We thought of you and the Harlem Meer but did not reach that area this time…did take in a Broadway show though, which was special!
    Take good care…enjoy summer!

  • Munira said:

    I do love reading your posts Stephen! I am glad you’re feeling stronger and hope you will get back to cycling and volunteering!