Disclaimer: This blog post is based strictly off of my own personal experiences with these medications, and what I’ve been told by my medical care team. Please make sure you discuss your case with your oncologist before switching any type of medication, or asking to switch! Also, I am not a medical professional, so fact check the sh*t out of everything I write. Kthanks.
Disclaimer Part Deux: Everyone reacts different to these treatments. Where I had one type of side effect, someone else managed perfectly fine. If you are about to start one of these treatments or worried that you might fall into the same issues, don’t be. There are so many treatments because they work so differently per person. This how they worked for me and me alone <3.
Here We Go!
If you’ve been following me for a while, you will know that about 3 months ago I made the decision to switch from the Aromatase Inhibitor (Arimidex) and Ovarian Suppression (Lupron – I was on Zoladex for a hot sec while my insurance imploded, but then switched back to Lupron) method to Tamoxifen.
What’s the difference? Well, AI and OS is a pill once a day + a shot (in the butt or stomach – fun) once a month given by a medical professional, and Tamoxifen is a pill once a day. As for how they work, I’m going to include a cliff notes version and link the full articles. I won’t go into detail about ovarian suppression since it’s really just shutting down your ovaries and everything that comes along with having them.
Aromatase Inhibitor: “Aromatase inhibitors stop the production of estrogen in postmenopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.” You cannot get pregnant while on this treatment.
Tamoxifen: “Selective estrogen receptor modulators, called SERMs for short, block the effects of estrogen in the breast tissue. SERMs work by sitting in the estrogen receptors in breast cells. If a SERM is in the estrogen receptor, there is no room for estrogen and it can't attach to the cell. If estrogen isn't attached to a breast cell, the cell doesn't receive estrogen's signals to grow and multiply.” You CAN get pregnant while on this treatment.
Now, some people take Tamoxifen AND get ovarian suppression. I’m not that girl. So I won’t write on it, but it’s definitely an option!
My initial treatment plan
Ok so. I started with Lupron injections and Femara (letrozole) pills. We did NOT get along well. The Lupron was whatever (at first), but the letrozole pills destroyed my joints. After about two months I woke up with searing pain in my hands, and I could barely move them for an hour after I woke up. My knees became creaky, and the bone pain escalated. My oncologist and I decided we needed to make a change. So we swapped out the letrozole for anastrozole (Arimidex).
The Arimidex solved my joint pain within a month, and I was pretty happy about that. It definitely pays to switch if that’s something you’re struggling with, these drugs act uniquely on a case by case basis. However, after my bone pain woes went away, I quickly realized that the ovarian suppression was pretty much destroying my quality of life.
Why I didn’t do so well on OS and AI
At 30 I became the butt of every old woman joke, a dried up spinster, a relic of a sexual past. Lame in the crotch, I had no sex drive. Someone give me 50 cats and show me where to grow old alone. My oncologist and I worked together to find the best way forward, which included various therapies, creams and good old fashioned positive thinking.
But it was for naught. And not for naught-y. Of that, I was getting none, because I was too scared to try.
Beyond the nether-issues, both Lupron and Zoladex turned me into an emotional zombie. I felt nothing, I liked nothing, I was passionate about…nothing. Not like I used to be. It had completely changed me, and I was getting sick of it. Sure, every now and then I’d feel my former self breaking through, but for the most part, I was puttering through life apathetically.
Oh, and showing up to the hospital once a month for this shot was difficult in and of itself. I would have to schedule the appointment (mornings and evenings were not always available), take time to go get it. Usually wait for a long time to be seen, and then get back into my day. If you have the option to go for the 3 month version or administer it yourself, I would take it.
My breaking point
A lot of people ask me when my breaking point was. But the truth is, I never hit one. I openly communicated with my oncologist every step of the way and she ultimately made the call to switch me to Tamoxifen.
Since I was diagnosed as Stage 2A with no lymph node involvement, she believed the OS and AI treatment to be too aggressive. She had tried it with me because of that fact, but it’s only been scientifically proven to decrease recurrence in women with positive nodes. That wasn’t me. And the percentages weren’t high enough regardless to keep me on it. Not while I was a zombified sexless robot.
So, what’s Tamoxifen been like?
With a few months under my belt, I’m ready to give my take on Tamoxifen. First of all, I got my period back. Jury’s still out on how long I’ll get my monthly flows but when my ovaries woke up, it was like the wrath of Satan rained down into my uterus. It lasted about 4 days and the cramps eventually subsided. This will likely repeat itself until my body “evens out”, at which point it will reduce to light spotting or disappear entirely. (SIDE NOTE: I have a copper IUD that I’ve had for 3 years, so this could also be a factor). In any case, I was painfully happy to see my period again; it was like getting punched in the face by my best friend. And a nice reminder of how my body used to work.
Period aside, my emotions have returned to a much more normal level. I don’t feel quite like I’m floating through time on a magic-less carpet ride. However, that does sometimes mean I get PMS mood swings... because nothing is ever simple, is it?
I retain water more than I used to, probably in relation to my period coming back, but it does feel like I’ve gained some weight. This could be due to my hectic travel schedule and not eating as well as I should be. Something that I’m trying to change. I’ve gained 4 lbs since January and my oncologist believes it’s mostly muscle from training, which is cool, but I personally feel like I’m bloated more than I used to be. Either way, I don’t particularly care about weight gain etc, and neither should you, I just know the question will come up.
Now for the big whammy: the normal functionality and libido levels that a 30 year old woman should have, HATH RETURNED.
The switch to Tamoxifen was the right move for me. This was done based on quality of life, prognosis, diagnosis and long term goals. I spent 7 months on the OS and AI treatment and it just wasn’t for me. I was node negative and had a pathological complete response to treatment, which helped my oncologist and I make the decision to switch to Tamoxifen.