Manhattan Tales: 2012 In Review
The end of the year provides a great time for review and reflection.
2012 has been a momentous one for me in my journey with myeloma. It included both difficult and awe-inspiring moments.
I went off chemotherapy in February in preparation for a stem cell transplant. I have not been back on it since then. No more exciting steroid “highs” - but no more steroid rages either!
In early March, I underwent a stem cell transplant. I lost my remaining hair. I recently stumbled across a draft email I had written but never sent from one of my more difficult days in the hospital. The email describes a fruitless attempt to learn how to use a bedside commode. I had thankfully totally forgotten this (and most other details) of my three-week hospital stay.
Through my hospital stay, I became deeply aware and appreciative of the nursing profession. Up until my diagnosis with myeloma, I had been a pretty healthy person and didn’t know much about nursing. The care and compassion I was given at the hospital in my “hour of need” was beyond comprehension to me.
2012 was also the year I became utterly in awe of the advances in medical science that have taken place in my lifetime. As I recovered from the stem cell transplant, I studied up on the history of cancer research, and then on the development of bone and stem cell transplants. The depth of knowledge on a cellular level of what goes on in the human body is far beyond my ability to understand. The techniques involved in prompting a patient’s bone marrow to regenerate with his or her own blood cells are fantastic beyond imagination.
After I emerged from the hospital with my newly minted bone marrow in late March, I found new joy in life’s simple pleasures. Sitting in a sun-filled room in my own apartment after three weeks in a monochrome hospital room was pure delight. Walking two blocks over to the Hudson River and watching the sun glitter on the water was a treat beyond any previously imagined. My stamina steadily improved, and by the end of May, I could walk (with rests) for over an hour.
In June, I returned to the gym. For the past three years, exercise has been a great mood stabilizer and mood elevator for me that I used to cope with the myeloma and my retirement. I have come to deeply believe in endorphins, those chemicals that are supposed to be released into the brain by exercise. Nothing else can explain my improved mood after my visits to the swimming pool. By mid-July, I was swimming for half-hour stints. Not fast, but much of my stamina was continuing to return.
In August I joined Medicare. Strangers started offering me their seat on the subway (and no, I’m not showing them my senior citizen transportation card!). My wife and I also took what seemed to be the best vacation we had ever taken: We traveled to Scandinavia. I particularly enjoyed the thermal pools (one in the wild and one in a spa); I also had a few dips into the Baltic Sea. Cold water does great things for my neuropathy. Eating herring two to three times a day undoubtedly was also good for my overall health.
On the eve of Halloween 2012, Hurricane Sandy blew through New York. Electric power and telephones went out in lower Manhattan. The power came back for us five days later, but tens of thousands of New Yorkers were displaced from their homes. Three of Manhattan’s major hospitals were flooded. They remain closed more than two months after the storm blew through the City. Electric generators and FEMA trucks are still operating on many streets of Manhattan south of Wall Street. Construction crews continue to swarm in and out of the skyscrapers.
Hurricane Sandy was a major marker for me in my myeloma journey. On November 1, two days following the storm, I wended my way up to the hospital for my monthly blood tests, safely navigating the three miles of Manhattan traffic without traffic lights.
Unfortunately, the results that came back the next day were not good. As my wife and I had suspected from the previous two blood test results, the stem cell transplant was not having a long-term impact. The myeloma indicators in my blood were beginning to rise dramatically.
We quickly made an appointment to see my hematologist who reviewed three different courses of treatment with us. Two involved clinical trials, and the third, Kyprolis (carfilzomib), had been approved by the FDA a few months earlier.
After a couple of days of reviewing the information and the literature that the hematologist provided to us, we decided to try one of the drugs in a clinical trial. It is a monoclonal antibody that has a cancer-killing (cytotoxic) chemical agent attached to it. The antibody is designed to attach to the surface of myeloma cells. When the antibody latches onto the myeloma cell, the chemical agent is released into the cell and kills it. I am scheduled to begin the treatment in mid-January – not soon enough for me!
Over the next few months, I hope to be able to study a high-school biology text book to learn more about the basics behind the treatment. I’ll keep you posted and share more Manhattan Tales with you.
In sum, 2012 was a momentous year for me. Though I’m of course disappointed that the stem cell transplant didn’t have a long-term impact, I remain grateful and optimistic. On to the next battle!
I wish you all a happy and healthy New Year.
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
.
Hi Stephen, Thanks for your update...you have been very kind to share your experiences with us readers! I hope that the new drug trial works very well for you....an antibody with a killer chemical that would destroy the myeloma cells. I think you are past basic high school biology already in your understanding of this! The patients such as yourself who undergo clinical trials are helping to advance the medical science in myeloma treatments. How long would you be on it, before they assessed whether or not it was helpful..if you don't mind me asking?
I was thinking of you and your family while chatting at a holiday party last week. The young son of our friends, who is living and working in New York, was also displaced 'uptown' by the hurricane. He was able to return to his rental unit after the lights came on again! I don't think he has been to the MOMA yet (maybe the Met, but not the Cloisters). I was able to inform him that on our last trip to NY, IN '08, we went to the MOMA on Monday, because the Met was closed that day, and to the Met on the Tuesday...wow. It was in October, very stormy and rainy, and my umbrella blew inside out!
Hi Stephen
i live on Long Beach Island and would be very interested in that trial that you are starting.would you please send me some info.what Dr.and hospital?
thanks
Al
Stephen,
I have been following your column for some time now. We have both found that swimming has done a lot to help with peripheral neuropathy. Thankfully at this time my peripheral neuropathy has subsided to levels that I can easily tolerate now and I have been complete remission for nearly a year after my SCT. I just got back from skiing at Mammoth Mountain out here in California. Thankfully I have minimal skeletal damage. Sorry to hear that your SCT did not have a lasting effect. Though life for me is pretty much nearly back to normally at this time there is still that unsettling thought in the back of my mind that that could change and anytime. Each monthly blood test is a bit of suspense. Fortunately there appears to be a lot of viable treatment options available to you and being in New York these options are close and readily available. The latest ASH meeting had a lot of encouraging news regarding the response rates in heavily pretreated patients in the different trials. I hope to hear encouraging news from you going forward.
Hi Stephen,
Thanks for sharing your journey with us. Sorry to hear that your myeloma is active again. I remember the moment the doctor got my results after my auto - he couldn't hide the concern in his eyes. It was gut wrenching. But a seemingly hopeless situation can be turned around with different treatments (my allo). The monoclonal antibody sounds like a great option. All the best for it and please keep us posted.
first of all happy and healthy new year for us all.
i am trying to find where Stephen is doing this clinical trial,does anyone know?
thanks
Al
Nancy: In response to your question as to how long I will be in the clinical trial before assessing whether or not it is helpful, I have the impression that it would not more than a couple of months. My numbers are pretty alarming, so my understanding is that if there is no response I think the plan is to have me withdraw from the trial and go to Kyprolis, or pomalidomide if it is approved by then. Also, it will depend on how well I tolerate the drug; a small minority of patients
don't tolerate it well.
Al, I am being treated at Mt Sinai Hospital in Manhattan.
Best wishes to you, Stephen, and hope you get a protocol of treatments that work really well for you.
Stephen,
Thank you for sharing. My husband was recently diagnosed with MM. (Nov. 2012) We are participating in a clinical trial as part of MD Anderson's Cancer Center for MM (Houston, TX). He is taking Dexamethosone, Lanilinamide, and Valcade for 3 21 day cycles. The trial part comes down to either preparing for and having a stem cell transplant or continuing to take the 3 drug combo for another 5 cycles and then go on to maintenance. In both cases stem cells will be harvested and banked for a transplant at some point in the future.
We will know which way to go within a week or two. My husband is 48 and in otherwise good overall health. We are hoping to put off the transplant and continue with the drug treament.
Best of luck to you!!!!!!
I was diagnosed with MM in may with a 60% count from my biopsy. Started with Valcade, Dexamethasone, but neuropothy was taking it's toll. Then took Revlimid, and dex, but it would not bring my count down to the required 5% level,that is required by NU to perform a STC, still at 27%. Have been on a Revlimid, Krypolis, dex cocktail for the last month, and my protein levels have come down to levels not seen previously. Will be completing three more cycles, before I will know if this treatment can get me to the STC stage.