At my last consult, early in October, my gyn-oncologist said that it was time for me to stop taking Megace, the hormonal treatment I'd been on since September of 2011 (after I had disease progression to my lungs). Please join me after the stylized uterus for more.
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I've never fully understood the mechanism by which Megace is supposed to work; it's an artificial progesterone which apparently interferes with the body's production of estrogen. (If anyone has a better explanation, I'd be happy to hear it.) Even though I don't have ovaries now, there are plenty of other cells (ahem--fat cells in belly) which are churning out estrogen, and since the cancer cells were strongly estrogen-positive, the idea was that inhibiting estrogen would also limit the cancer growth.
The stats for the efficacy of this treatment are not great; at the beginning, when my oncologist proposed this treatment, I was horrified because many protocols describe this as a palliative measure. (It's too demoralizing to me to look them up even now, but you're welcome to check my recollection if you like. IIRC, somewhere south of 20% of patients have some months of progression-free survival on it, and not that many months at that.) This kind of prospect was not at all reassuring to me, only seven months after my diagnosis.
But after getting a second opinion and learning there weren't really any other options, I acceded. My oncologist said she had patients who had survived more than a decade on hormone treatment, so I figured it was the best choice available to me. However, I also decided to embark on a wide range of complementary and alternative medical practices, which I have detailed elsewhere. I am convinced that these treatment regimens also contributed to my return to health, particularly Ayurveda, yoga, and acupuncture, and I will be continuing those therapies.
Between September of 2011 and June of 2012 I had a very rocky time. Bad enough to go through chemo, not knowing the eventual outcome. Worse to do it all and have it not work, and then have to try something else. It was hugely stressful for all of us, and we struggled to maintain some sort of equilibrium. But fortunately for my family and me, the something elses did work. Each quarterly CT scan I had after September 2011 showed dramatic improvement until my scan of June, 2012, brought me to NED status. What a relief!
Then, earlier this year, I had a scare. At my April 2014 scan, the radiologist discovered a 6 mm lesion on my liver. Uh oh. The only good thing at the time was that in reviewing the previous two scans, that same lesion was visible (only no one had noticed it previously. Hmmm.) And it was good to have only one, and no growth since it was first caught a year prior.
I suppose I was saved a whole year of worry, not knowing about it until this April. But the interval between then and now, my scan early this month, was a difficult one to manage. I did not realize until after it was done and I had more good news (no change, no new growths) just how tense I had been. Tough, tough time.
As a consequence of my good scan, my gyn-oncologist said it was time to stop taking the Megace. It has some negative side-effects of its own (increased risk of blood clots, and increased appetite) for one thing, and for another it's just as well for me not to get too acclimated to it, lest the cancer cells mutate in response. Stopping now might mean it's available as a treatment later if necessary. And as treatments go, it's been pretty easy.
So now it's been two weeks. I was supposed to taper off, going to 40 mg. daily for a week, but I didn't last more than a couple of days. My husband says he thinks I seem a little more energetic, a good development generally. As for everything else, it's too soon to tell. But it is great not to be in treatment for the first time in almost four years. I've now moved to biannual consults, and I assume that if the next two go well, I'll then progress to annual checks. Whoo-hoo!
Many people report feeling a bit adrift when their cancer treatments end. I don't, at least not yet. Perhaps that's because I still have these regular monitoring appointments scheduled, and perhaps it's because I still have my other healers to see often. Mostly I feel liberated. I've lived most of my life in crisis mode, it seems, a condition only intensified by cancer. Now, the biggest crisis I've faced to date appears to be easing on down the road. I mean to take advantage of this opportunity to rethink my habits and patterns so that I don't lurch from crisis to crisis any more. That in itself seems like a huge gift. So we'll see.
I am quite interested in hearing from other folks who've ended active treatment. How did it strike you, then and later? What perspective do you have on it all now?