Since my multiple myeloma relapsed in 2010, I have participated in a clinical trial testing an immunotherapeutic called elotuzumab (Empliciti) together with
lenalidomide (Revlimid) and dexamethasone. The
experience is so different from the one I had when
I was initially treated 17 ½ years ago. Back then, I
could barely leave the house for 3 years. Now, I have
days when I can easily walk the 5-mile round trip to
Fire Island Lighthouse on Long Island.
My long journey with cancer began in February
1998. I was trying to teach my daughter to figure
skate. It was our first time out on the ice together,
and I fell, breaking my hip into 17 pieces.
Shattering your hip into 17 pieces is not something
that is supposed to happen to a 43-year-old man. So,
while I was in the hospital having my hip screwed
back together, the doctors ran a number of tests and
discovered that I had stage 3 multiple myeloma. I
had lytic bone lesions in several of my neck and
back vertebrae and in my skull. I put my diagnosis
down to being exposed to radiation when I was on
a business trip to the town next to Three Mile Island
during the accident in 1980.
Back when I was diagnosed, there was no
standard treatment for multiple myeloma. My local
hospital first put me on vincristine, doxorubicin
(Adriamycin), and dexamethasone. But that
chemotherapy regimen gave me serious heart
problems, and after a month, they switched me to
I was so sick that in May, the doctors told me I
would be dead by Thanksgiving.
I was not satisfied with that answer and began
looking for a second opinion. I ended up seeing Dr.
Ken Anderson at Dana-Farber Cancer Institute. Dr.
Anderson gave me a 5-year plan and told me, “If
we can’t cure you, we’ll come up with the next best
thing to keep you going until we find something
that will give us a positive result.”
I had a stem cell transplant on November 13,
1998. The high-dose chemotherapy and total-body
radiation that preceded the transplant were brutal.
My immune system was decimated, and I had to
have all my routine childhood vaccinations again
to rebuild my immune system. Life was extremely
tough for 3 years, but I’m glad I did it.
After that, the only treatment I received until
2010 was thalidomide, in 1999, for some lytic bone
lesions in my shoulder and pamidronate (Aredia)
to strengthen my bones.
Then, in 2010, when I was helping out one of the
patients that Dr. Anderson had asked me to mentor
by driving him to Dana-Farber for treatment, I
thought it would be a good time to have my blood
checked because I had not had it done for a couple
of years. Three days later, the doctor, Dr. Paul
Richardson, called and said, “We have a problem.”
I was back where I had started, with stage 3
Dr. Richardson told me that treatment had
changed a lot since my initial diagnosis and suggested
I consider a clinical trial for an immunotherapy
called elotuzumab. He explained that the drug would
use my immune system to kill the cancer cells and
that it was nothing like the radiation, chemotherapy,
or stem cell transplant I had previously received.
I trusted him implicitly and enrolled in the trial.
For the first 2 years, my M-spike, which is
how the doctors keep track of how my disease is
responding to treatment, kept going up and down.
Then, in 2012, Dr. Richardson added intravenous
immunoglobulin to my treatment plan, and my
M-spike started falling. Last summer, it was so low
that they did a bone marrow biopsy to see what was
going on. They couldn’t find any trace of cancer.
I’m currently taking a break from 73 months
of treatment with elotuzumab, lenalidomide,
and dexamethasone to give my body a rest. My
M-spike numbers are staying low, and it seems that
elotuzumab really did get my immune system to
kill off the cancer cells.
I consider myself very blessed in so many ways
and I want to give back. When I was diagnosed with
multiple myeloma, the only person I had heard of who
had the disease was Lenny Zakim. So I was delighted
when Dr. Anderson asked me to be a mentor to other
patients. It has given me a chance to help others
navigate the disease. We have the tools to treat this
devastating disease and give patients a better quality
of life, as well as the realization that the diagnosis
of multiple myeloma is no longer a death sentence.
STEPHEN (STEVE) HERZ // AGE 61 // WEST BABY