Ovarian Suppression and Aromatase Inhibitor

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Katrina5558
Katrina5558 Member Posts: 3
edited September 2018 in Hormonal Therapy - Before, During, and After

I have been on Tamoxifen for the last 4 years and my side effects have been tolerable. But I am always super paranoid about the major side effects of blood clots and uterine cancer. At my recent oncology follow up, my oncologist recommended switching from tamoxifen to ovarian suppression with an aromatase inhibitor instead. That would alleviate my concern of those larger side effects and has shown in studies to be more effective. But now in researching the ovarian suppression drugs, it has me worried and paranoid as well. Has anyone done this treatment before and have any input positively or negatively? Any information would be greatly appreciated.

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  • Walden1
    Walden1 Member Posts: 202
    edited September 2018

    I am just starting ovarian suppression with AI. I've been 6 weeks on OS, starting AI soon so I can't yet comment on that. I'm 45 and feel apprehensive about starting on AI as well. All I can tell you is OS is Nt too bad, it is mostly hot flashes (my MO says it's basically what you normally expect from menopause). I would also love to hea from other women about AI. Other patients have told me they tolerated the extra side effects of AI, because of the potential reduction in recurrence risk. My MO says try it, if you have unacceptable side effects in terms of quality of lifethen we can switch to something less problematic. Also read the details of the soft text trial, it basically says that some people benefit much more than others, so the increased side effects aren't worth it if you are low risk for reoccurrence.

    Will your doctor monitor your estrogen levels or do a bone density scan? When I asked my doctor about these things she said no they wont do these tests. Seems doctors differ in their approach to tests for monitoring. However they have medications to counter bone loss, which I believe they will give me preventatively. Did your doctor mention any of that? I would love to hear from people who are getting these tests or are not getting them, to understand better what other doctors are recommending.

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  • TomMorrow
    TomMorrow Member Posts: 43
    edited September 2018

    My wife is just starting this process. She is 49 and not in menopause. MO's want her to take an AI (and not Tamoxifen) because of her low PR (5%) (but high ER (90%)). The plan is to do one to two months of Lupron injections while she schedules surgery for an oophorectomy. She is starting letrozole in early October. She is also doing a base line bone density test next week and will repeat every 2-3 years.

    She has genetics for bone loss so she is also going to receive Prolia injections every 6-months, duration to be decided.

    What AI's are your doctors recommending? I was told that, based on recent studies, none have better effectiveness over the others, but that the side effects can be different.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    hi I'm on Lupron, xygeva (for bone support), letrazole (this is the AI) and Ibrance.

    I chose the Lupron injection over the oophoerectomy just because personally I don't like going under the knife. But I've spoken to many women who are happy they did it. I'm 41 yrs old.

    My doc did run a hormone panel before and after I started the Lupron to be sure that it was working. My estrogen went down to zero so it definitely worked. One thing they didn't warn me about was that I ended up having a final period. It was a surprise to me but then made sense as my body was still preparing for a mentrual cycle and blood was building up in my uterus. I thought the Lupron wasn't working until I called my MO and they told me that the blood work showed it was clearly working and that it was just kinda like a “discharge"' period - the last one!! It was emotionally difficult for me but I had to put my emotions aside and just do it so the cancer could be treated.

    My MO did not give me any info regarding what happens to a woman's vagina - the tissues dry up and sex becomes painful. I wish they had warned me about this so I could plan ahead instead of discovering it on my own and having to to my own research. However, my MO is a man, so maybe that's why he didn't bring it up??? This can also happen with having ovaries removed. It doesn't happen to everyone but be forewarned and speak to your MO and OB/GYN about vaginal health.

    the hot flashes...ugh!!! Not fun for me. They seemed worse at first, then seemed to calm down, and now are back in full swing. I heard someone call them “industrial strength" hot flashes and I feel like that is accurate. My MO offered to put me on Effexor for hot flashes but I declined being that I didn't want to be on another medication and decided to wait and see how it goes. I'm pretty used to them now and they are more annoying than anything.

    I asked MO about dexa scan and he seemed indifferent and said I could get one if I wanted to. I decided not to worry about it.

    I get xygeva for bone loss/bone mets issues - I had extensive bone mets at diagnosis and so immediately put on xygeva. I started at 1x injection/month and now after a year moved to 1x every 3 months. My bone mets have healed and I am grateful for this medication.

    It is hard for me to know which medication is causing what in terms of side effects since I'm on four big ones

    Letrazole can cause some joint pain to the point that some folks can't handle it. I have definitely felt the joint pain and have figured out ways to combat it. My MO says there are two or three others we can always switch to if need be but I seem to be managing everything pretty well. I work out regularly, I go out with friends and family and I still work and run my own business. I'm highly functioning with MBC :)

    Hope this helps answer some questions and offers insight :-)

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