As the woman handed me the little brown bag and my credit
card receipt yesterday, she asked if I was, “familiar with this drug.” I smiled,
“Two years ago today, I cracked the seal on my first bottle of Tamoxifen.”
At the time, the anti-estrogen and I were embarking on what
we thought was a 5-year affiliation. Since that time, breast cancer research
has determined that our togetherness should extend a full decade.
We have a tumultuous relationship, to say the least, and my
part of the agreement is to recommit each year. Yesterday’s casual handing over
of the credit card was the subtle recommitment ceremony.
Tamoxifen is considered an anti-estrogen and blocks the
effects of naturally occurring estrogen in my body. This sounds all bad but,
considering both my tumors (invasive ductal carcinomas) as well as the ‘diffuse
DCIS’ in my left breast all thrived in an estrogen rich environment, estrogen
blocking is considered a necessity.
And yet there is a flip side of the drug.
Tamoxifen comes with its own black box warning and more than
a handful of diverse and adverse side effects. For instance, “Tamoxifen maycause cancer of the uterus (womb), strokes, and blood clots in the lungs. Theseconditions may be serious or fatal.”
Originally I viewed the prescription, through post-operative
rose colored glasses, as a recurrence prevention tool. And then the side
effects kicked in and I started researching in order to make some educated
decisions.
Tamoxifen does not prevent breast cancer, a breast cancer
recurrence or a metastasis. Tamoxifen has been proven effective in reducing the
risk of recurrence in women with estrogen positive cancers. There is also
research that suggests women without a diagnosis but a strong family history of
the disease may receive some benefit from the drug (called chemoprevention).
In other words, Tamoxifen reduces the chance that my cancer
will come back. No promises, no guarantees but some scientific data that says,
more or less: A group of women with some similarities in cancer pathology were
split into two groups. Fewer recurrences and fewer metastases occurred within
the group who took Tamoxifen.
Since there is no clear path, my decisions around the drug
are all made on the premise of an overall Risk/Reward calculation.
My side effects range from annoying to frightening so judging
quality of life of the drug on a day-to-day basis is a bad idea for me. I would
have said my farewells to Tamoxifen early on and, if I truly treated my
relationship with this drug the way I treat my relationships with people, I
would have pulled a restraining order on this co-dependent relationship.
In our house, when anyone forgets what they’re
saying/doing/thinking mid-sentence or immediately after, the rote response is, “Are
you on Tamoxifen?” Cognitive impairment, referred to as “la la-ness” in our
family, is a side effect of the drug.
Post-it notes, the Google calendar (for EVERYTHING), lists and repetition are
convenient fixes for a brain that seems to not hold information for a reliable
amount of time the way it used to. Risk vs. Reward score? I can deal with this.
On the mornings I wake up barely able to close my hands or
bend my legs because of joint pain, I curse the drug and then start moving.
Exercise helps to abate my joint and musculoskeletal issues. Risk vs. Reward score? I can deal with
this.
The side effects that have proved most unnerving are the
ones no one recognizes as side effects. Within a month after beginning
Tamoxifen, I noticed a tinglyness on the left side of my face. I bumped up my
hydration and monitored the annoying tingle. Flash forward two years and the
tingly-ness has extended across my entire cheek area, sometimes getting so
severe I have to rush to the bathroom mirror to make sure my face is not
drooping in a classic stroke manner. Two MRIs later we have confirmed there is
no brain tumor and my trigeminal neuralgia is, according to my health record, idiopathic.
The three other women I’ve spoken with, who also presented
with trigeminal neuralgia after starting Tamoxifen, believe we absolutely
understand the cause. Two of those women have chosen to stop Tamoxifen and
their tingly face symptoms have vanished. Risk vs. Reward score? I am
struggling to deal with this particular issue but, as long as it’s not a brain
tumor or a stroke, I’m good.
There is so much irony in some of these details. Soft tissue
swelling and random rashes have upset the apple cart as well. After daily
visits and a full battery of testing in the allergy clinic, the agreement
between my primary care provider, my allergist and, reluctantly my oncologist,
is that I’m actually allergic to Tamoxifen. So I take Loratadine (an
antihistamine) to tamp down my body’s responses to the drug.
To geek out for a second, inflammation responses have been implicated
in the development of cancers. And, the drug that I am taking to keep cancer away causes an inflammatory response
to the point I’ve been prescribed an antihistamine to treat the inflammation. Hmm... Really?!?!
Yep. True story. Risk vs. Reward score?
Right now I have got nothing better going.
Taking Tamoxifen is absolutely a quality of life decision. I
refer to the drug as my “safety net made of razor wire” and after several internal
back and forth battles, I have decided to reevaluate my decision to take the
drug on a year-by-year basis. Make no mistake, I have wanted to quit Tamoxifen
many, MANY times. Finding others who share similar side effects and
brainstorming unique ways to address those ‘adverse events’, have helped me
maintain my sanity. For instance, my own research has discovered that splitting
up my dose to 10mg 2x a day vs. the originally prescribed 20mg 1xday helps
reduce the severity of many of the physical side effects.
Ultimately, I try to tackle many difficult issues in a
dispassionate mathematical kind of way. Cognitive issues, joint pain and
swelling, soft tissue swelling, random rashes, tummy issues, moodiness, medical
menopause. And that pesky face numbness that landed me my very own neurologist
and recurrent MRIs all sit on one side of the equation. *
On the other side of the equation sits the possibility of
being cancer free for as long as clinically possible.
And, in my mathematical world as in my reality, the
possibility of achieving and retaining NED has significant value approaching
infinity. And having access to a cadre of women who understand my frustration,
dilemma and ultimate decision is priceless.
Ironically, there is now data suggesting those that
experience specific adverse events (researchers call them AEs, patients call
them $hitty side effects) have an increased survival benefit from the drug.
Regardless of the ‘benefits’ of side effects, many women are
stopping the drug based on quality of life issues. A September 2013 article references a study published in the British Journal of cancer, “The authors
found that nearly four out of 10 women on the study completed less than 80 per
cent of their prescription. Among women whose cancer came back, such ‘low
adherers’ tended to have their cancer come back sooner.”
And, on the other side of the equation, are women who suffer
side effects in silence fearful of appearing/sounding ungrateful for the
availability of a treatment when others have few options.
To celebrate two years down, or perhaps to celebrate making
a decision to continue for another year, I’m kicking off a completely patient-driven, side effect/quality-of-life survey on the side effects of Tamoxifen. Let’s provide valuable content into the real
patient experience. Please feel free to share your experiences and please share
the survey so others may share their experiences.
Ten years of Tamoxifen. From a clinical perspective, I’m 20%
of the way there. From an I-get-to-decide perspective, I’m taking it one year
at a time.
* The hot flashes don’t even rank. I kind of like the
unexpected warm hugs I receive on a completely unpredictable basis.
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