When I was diagnosed with Waldenström
macroglobulinemia in 2011, I was shocked. I was just 47,
with three kids, a great husband, a crazy dog, and a busy
life. A;er my disease failed to respond to the ;rst treatment
assigned to me through a clinical trial, I immediately
enrolled in a second clinical trial. I was assigned ibrutinib
(Imbruvica) as part of this trial and have been taking it
ever since, and I feel great. My life is as busy and full as it
was before my diagnosis.
My journey with cancer began in February 2011. While
showering, I noticed a few lumps in my neck that hadn’t
been there before. I wasn’t really worried, thinking they
were pimples or something else that would soon go away.
But they didn’t go away. So, when I saw my primary care
physician for my annual physical the following month,
I asked her to check them. She didn’t think they were
anything to worry about either, but I knew something
wasn’t right and asked her to order some follow-up tests.
A CT (computerized tomography) scan of my neck and
chest revealed that I had enlarged lymph nodes. However,
a;er follow-up blood tests, the conclusion of a sta;
review of all the information was that we should hold o;
on any treatments because a virus may have caused the
enlarged lymph nodes. It was hoped that my symptoms
would disappear, but they didn’t. As a result, in June 2011,
I had a biopsy of the lymph nodes and bone marrow.
;e biopsy results showed that I had Waldenström
I had no idea what Waldenström was. My local oncologist
told my husband and me more about the disease and
recommended that I immediately start treatment with
bortezomib (Velcade). We listened, and went home and
researched the treatment. We learned that bortezomib had
a lot of side e;ects, so we did more research. ;is led us to
Dr. Treon at the Dana-Farber Cancer Institute in Boston.
At our ;rst visit to Dana-Farber in September 2011, we
were told that the best approach would be to watch my
symptoms and wait. However, by our second visit, in
January 2012, I was feeling tired all the time and the
markers of disease in my blood showed that my condition
had deteriorated. Dr. Treon told us it was time to do
something and suggested I enroll in a clinical trial testing
car;lzomib (Kyprolis) together with rituximab (Rituxan).
A;er a number of rounds of car;lzomib and rituximab,
the side e;ects I was experiencing started mounting
and my disease wasn’t responding. So, in June 2012, I
discontinued the trial.
At Dr. Treon’s recommendation, I immediately enrolled
in a clinical trial testing ibrutinib. I went home with a
month’s supply of pills and the next morning started
taking them. Within days, my energy had increased, and
at my one-month checkup, all the markers of disease in
my blood showed improvement and I hadn’t felt so good
in a long time.
I am still taking ibrutinib and have follow-up visits every
three months. I feel apprehensive at each of these visits,
but so far, so good. I continue to do well. I have my down
days, but a;er hugging my kids and husband a little bit
tighter, I keep going.
Participating in clinical trials was an easy decision for me.
I feared my loved ones could be stricken with the same
disease in the future, and I knew that by taking part I
was doing something that could potentially bene;t them.
I also felt that I had more control over my health care
because the clinical trials gave me choices fueled by the
most recent research.
I am so thankful for the opportunity to take part in clinical
trials. At my ;rst checkup a;er being assigned ibrutinib,
Dr. Treon thanked me for taking part in the trial, and it
was then I realized that researchers need participants as
much as participants need researchers, and that this is the
way cancer will be cured.
BEATING WALDENSTRÖM MACROGLOBULINEMIA
THANKS TO IBRUTINIB
American Association for Cancer Research 59