No end to the drug therapy
Posted: July 24, 2014 Filed under: Uncategorized | Tags: da Vinci hysterectomy, femara, infection after mastectomy, micobacterium fortuitum, nosocomial infection, psychological effects of breast cancer, side effects of femara, side effects of tamoxifen, tamoxifen, tamoxifen vs femara 14 CommentsMisguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”
Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.
Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.
However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.
I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.
It’s never enough.
While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.
Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.
My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.
The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.
All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?
It’s never enough.
It’s never over.
The Pink Underbelly 
You never signed up for this. It’s not fair. You deserve a get out of Cancerland free card. Somewhere in the universe, I hope that karma is keeping score.
More drugs and none of them are fun?? That ain’t right. It’s quite impressive that you don’t explode with rage or collapse into a quivering heap of self-pity.
You obviously need to eat more lobster to cheer you up!
This sucks, for sure. I’m impressed with your determination to keep going forward, to do everything you can to make sure you are around for as long as you can be. You still want to be a grandmother someday, right?
Can’t believe it. Are the risks of all these side effects pretty high? Over the years all the drugs I’ve had to take have had similar side effect risks, but only three that I can recall had to be stopped or switched because I couldn’t tolerate them. Everyone’s body reacts differently, so I’m going to be praying that yours will respond well to this drug. Meanwhile, why don’t you go fix yourself a mimosa?! 🙂 Love you!
Thank you for writing so succinctly about why getting rid of our “girl parts” doesn’t solve the pesky problem of recurrence. It reduces (but can never eliminate) our cancer coming back.
You have been through the entire washing machine (not just the ringer), and you deserve a break, my dear!
I had to stop taking Tamoxifen too. Felt like I had a constant fever. And oh, the fatigue. And the hot flashes go without saying. And the trouble sleeping. OY! I know it is working FOR us, but it SO felt like it was working against me. I had to stop taking it after 2 1/2 years.
My oncologist wanted me on Femara all along but I had to wait until I was postmenopausal. I started taking it 9 months ago. While far from perfect, I’ll take Femara over Tammi any day!! My hot flashes are greatly reduced, coming at regular intervals (bedtime, a couple of times during the night, and upon awakening, then just 2 or 3 during the day instead of every 20 minutes around the clock).
The dreaded joint pain slowly showed up after 3 months. Stiff upon awakening, trouble getting up fast if I’d been sitting too long. Some days my whole body feels stiff. I take Tylenol. Exercise and staying as physically active as possible definitely helps (though seems counterintuitive).
I try to hide how uncomfortable I feel and seldom talk about it. And I appear happy and healthy (where is my Academy Award?), so people think all this BC crap is behind me. But they never see how I turn away when I catch a glimpse of my scarred body in the mirror. They don’t know how hard it is to down these daily meds and suffer the crippling consequences. They don’t realize how these little pills help to stave off the fear of recurrence.
I hope you have a better experience with Femara than you did Tamoxifen. Feel free to share all about it. That’s the reason I started blogging in the first place; to have an outlet for what I was feeling. It has helped beyond words to find wonder folks like you who have lived it, and who understand. Gripe away — we are listening, and we get it! {{{hugs}}}
Well shit 😦
I was on Anastrozole for 8 months. Could not stand it. Quality of life has value you too. I am BRCA1+. 18 months from treatment for ova 3c. And one yr from BC 1. Now. Starting a reoccurrence for OVA. QOL is going to get worse very soon.
Who knows,eh? I am on Armidex, but can’t say if it is any more effective than just Zolodex or not. Who knows. We do our best, and I guess that means using the resources. But frig, I know, it just keeps going on – and on, and on, and on.
Fingers crossed this stuff leaves your bones alone.
I’m so very sorry, you’ve had to go through all this hell. Cancer stinks, and it’s amazing all the hoops we must jump through — the pain and suffering — just to try to save our lives. Thank you for this post.
I understand exactly what you are writing about on this one. I have also been through Tamoxifen HELL..ended up with a blood clot after 8 months. Hysterectomy came next followed by Arimidex. Horrible side effects!!! It never ends 😦
Everyone’s side effects are different but here is some decent news. I didn’t have bad SE the first 18 months of Femara. They did get bad but so far, knock wood, arimadex has been a breeze. Since you can rotate AI’s you have some wiggle room.
Just catching up girl. It is a shitty hand. Yet, sometimes, I look at my dad and his heart bypass and statins and blood thinners and sucky side effects, or my friends who are paraplegics…its never fair, never enough it seems. But I suppose, better than the alternative…at least that is what I keep telling myself….just get to both kids weddings I tell myself…yeah.
So sorry to read about this. Keep your head up and stay strong! I had a quick question for you & was wondering if you’d be available to email me at your earliest convenience? Thanks! I hope to hear from you soon. cvonstjames AT gmail DOT com
[…] because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that […]