Me vs. MM: The Beginning
Published: Dec 15, 2011 12:47 pm
So why name this column "Me vs. MM”?
Because I basically consider myself at war with multiple myeloma, and my philosophy is to battle it as best I can.
I realize it might be more appropriate to name it "Us vs. MM", since ours is definitely a collective effort that includes family, friends, doctors, nurses, and many others.
But, in the end, I just felt the personal part of the battle – the “me” – is too important to leave out. In the end, I am the one who is going to have to translate the collective effort into my defeat of my specific case of myeloma.
(And, to be honest, I also think "Me" sounds better than "Us.")
Each month in this column, I hope to share experiences, observations, and perhaps a bit of humor that may help others in their battles with multiple myeloma.
Over the years, I have learned that people generally have similar anxieties, concerns, hopes, dreams, and joys. So it often helps to know that others share the same feelings, that there is someone traveling a similar path, that you are not alone.
With any luck, some of what I write will connect with a few people and perhaps provide some comfort.
So given that, please allow me to introduce myself.
I am 53 years old and had been relatively healthy my entire life. I am 6'1", have maintained my weight around 180 to 185 pounds throughout my adult life, and exercise regularly, including biking, strength training, and hockey, sometimes mixing in swimming, tennis, or various other activities.
I eat well, my cholesterol levels are excellent, my blood pressure averages around 115 over 75, and my resting heart rate is in the mid 50's. Until recently, I rarely saw a doctor except for an occasional injury.
Overall, I figured I was doing a pretty good job of taking care of myself, and I was starting to think about all the things my wife and I would be doing as we became empty nesters heading toward retirement.
Then, about a year ago, WHAM! - life took a right turn.
I probably would not have discovered I had multiple myeloma if not for my being a regular blood donor. In the fall of 2010, my iron levels dropped significantly and I was unable to donate. I made an appointment with my doctor, and after some blood tests, he indicated I had anemia and referred me to a hematologist.
My wife and I met with the hematologist in January 2011, and after an additional battery of tests, we received the news that I had cancer.
At this point, the doctor gave us a brief description of the disease, indicated survival was about two to three years, and gave us a stack of information to take home and read. Karen and I were stunned and were barely able to make it home before we completely broke down.
My next appointment was a week later, and fortunately, I had been able to do considerable research before meeting with the doctor again. He indicated he would like to start me on treatment immediately with Revlimid (lenalidomide) and prednisone for four cycles, followed by a stem cell transplant.
Based on the research I had done, I realized my doctor was not necessarily current regarding my disease, so I said that I would like to get a second opinion before committing to anything, and I was referred to the University of Michigan.
What an adventure that turned out to be. On the day of my appointment, Michigan had the worst ice storm I have ever experienced. What should have been a two-hour drive took five hours, with the highway actually shutting down for an hour at one point so it could be salted and cleared of the countless cars that had gone off the road or been in accidents.
Arriving three hours late amid all kinds of chaos, I discovered just how committed and caring cancer centers and their staff can be -- a sentiment so many others have also expressed.
In the end though, what a blessing getting to the University of Michigan turned out to be. I met with Dr. Jakubowiak, a leading multiple myeloma researcher, and I was able to get into a clinical trial testing “CRD” - carfilzomib, Revlimid, and dexamethasone (Decadron) - as a treatment for newly diagnosed multiple myeloma patients.
I started treatment in March, and after one month, I reached a partial response.
After two months, I reached a very good partial response.
With those results, I had expectations of reaching a complete response quickly, but my response slowed thereafter.
I have recently completed my initial eight cycles plus one maintenance cycle, and I am currently at a near complete response. My IgA counts continue to drop, however, so there is still hope for that illusive complete response.
During this time period, I have also gone through stem cell collection so that I have the cells if the need for a stem cell transplant arises in the future.
While there is nothing good about having cancer, at least I have been fortunate that the disease was discovered relatively early and the only symptom I displayed was anemia. I have no bone lesions or deterioration, no elevated calcium levels, and no kidney issues.
Furthermore, I have none of the chromosome abnormalities typically associated with poorer prognosis. As a result, I've been able to remain active, and the only concession I really had to make is giving up hockey, which I have played consistently since my youth.
Life now is a bit different than before, definitely filled with a lot more uncertainty, and I'm certainly going through a lot of audio books during all the trips to the University of Michigan.
However, I feel there is hope, and I will continue to battle as hard as I can.
Peace, and live for a cure.
- Autologous Stem Cell Transplant Therapy With Velcade-Revlimid Or Velcade-Thalomid in New Multiple Myeloma Patients (ASCO 2009)
- Complete Response After Stem Cell Transplant For Myeloma Indicates Best Prognosis
- The Top Myeloma Beacon Patient And Caregiver Columns Of 2011
- The Top Myeloma Beacon Patient And Caregiver Columns Of 2012
- Study Identifies Factors Linked To Longer Survival Among Myeloma Patients Receiving Stem Cell Transplants