Changing from Tamoxifen to Ovarian Suppression + AI

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Tmh0921
Tmh0921 Member Posts: 714
edited June 2019 in Hormonal Therapy - Before, During, and After

I've been on Tamoxifen for almost 3 years now, but was just diagnosed with a new highly ER+/PR+ IDC. After my upcoming BMX and reconstruction, my MO is switching me to ovarian suppression + AI. Does anyone have experience with beingswitched from Tamoxifen to OS + AI and if so, how different are the side effects?

I already have a lot of side effects on Tamoxifen including night sweats, joint and muscle aches, fatigue, insomnia, digestive issues, etc.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Hi TMH --> I haven't been on as Tamox as long as you have, and obviously our specifics are different, but I'm also making the switch to OS + AI, starting next week. I joined a thread Women on Ovarian Suppression + Hormonal Therapy Unite! and it's been very helpful and supportive. Maybe this thread would be helpful for you too, in figuring out what the future may hold. There is a member, Mellee, that may be more similar to length of time on Tamox and the switch. Wishing you the best on your own switch and journey.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    I was never on tamoxifen but the side effects you mention are similar to AI drugs. But add in dry skin also I had to have 2 separate root canals.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited June 2019

    Thanks Spoonie77. I posted in that thread but didn't get a reply so I thought I'd post separately. I'll definitely participate there once I am switched over.

    Meow13 - I have dry skin as well, no root canals yet thankfully. I also get frequent hives for no apparent reason. Sounds like switching to an AI will just be more of what I've had with Tamoxifen.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Omg I see that we did miss your post TMH! I just posted in the thread with a quote of your question. Hopefully someone will stop by soon. So sorry we missed your question earlier.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited June 2019

    No worries Spoonie

    Smile

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  • mellee
    mellee Member Posts: 434
    edited June 2019

    I just posted a response to your question over in the thread Spoonie mentioned above. Feel free to DM me any time if you have more questions.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited June 2019

    Thanks Mellee, I responded in the other thread

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  • Fightingirl
    Fightingirl Member Posts: 409
    edited June 2019

    Hi, I have been dealing with METS since November last year. I did not take the Tamoxifen after my first bout with BC...it came back 2 years later! I did take Tamoxifen for a couple months and switched over to Zoladex for ovary shut down and Letrozole (AI) I was quite sick at the time I was on Tamoxifen...throwing up constantly...I lost so much weight. I'm not sure I can say it was the Tamoxifen as they were also experimenting with different anti-nausea meds and pain medicines at that time too. Since I've been on Letrozole, Ibrance, and Zolodex I have gained weight. I don't want to be sick again but I wish I could shed a few of these pounds! I am tired a lot. I also get Zometa once monthly and that seems to really heighten my fatigue for a few days after. Mostly I would say that I'm happy on this combo and doing well. My liver no longer shows disease and I hope the next PET/CT clears up even more areas of disease. I do have a lot of tightness in my legs mainly but I think that is more from the radiation to my femurs. Keep us posted on how it goes for you! I wish you nothing but the best!

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited June 2019

    Fightingirl

    Thank you for sharing, I'm sorry to hear of your Mets. I took Tamoxifen for almost 2 years after my first diagnosis in 1999. I had fewer side effects then but I was in my 20s. I started taking Tamoxifen again in 2016 after being Dx with ADH. Since then I've had more ADH along with ALH, DCIS, and now this new IDC (which is probably related to the DCIS last year). Clearly the Tamoxifen isn't working for me. I hope surgery with OS+AI works.

    I hope your Mets continue to improve. Cancer sucks

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2019

    Tmh, I hope you tolerate the new meds well.

    I had a recurrence while on Tamoxifen, so I was switched to Zoladex+Aromasin. Compared to Tamoxifen, these drugs have been a little tougher for me, but it's been manageable. My side effects now are similar to my side effects on Tamoxifen, but more amplified, if that makes sense. One day at a time.

    It's truly different for everyone, but I hope it goes well for you.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2019

    I should add - for me anyway, there are a few key differences between Tamoxifen and OS+AIs:

    On Tamoxifen I still got my period, although it was irregular. No periods with OS+AIs. I feel way more postmenopausal now, and that makes me sad, because I'm only 35.

    On Tamoxifen I didn't have vaginal dryness. On OS+AIs I do, but I took a few months for that problem to start. I'm still figuring out how to deal with that.

    On Tamoxifen I didn't have trouble sleeping. On OS+AIs I have insomnia sometimes.

    Other side effects, like hot flashes, were similar between the two drugs.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited June 2019

    Thanks Buttons

    I am only 46 and still have very regular periods (every 26-28 days) on Tamoxifen. I've had 2 children between my first Dx and now, so the loss of the period is a bonus. But I do fear the “menopause" effect of this treatment. I've had so many side effects from Tamoxifen that I was hoping the change would be better, or at least no worse. I guess I'll be finding out

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Thanks Buttons for the comparison of the SEs you exprienced. That's helpful as I'll be following that similar path soon. I start my Lupron injections next week (if my DEXA that I had done today comes back clear) and then Arimidex in Sept.

    Honestly, I'm dreading it. Trying to remain optimistic but Tamoxifen was horrendous, no QOL, and it's summertime....I just want to "live" instead of struggle and fight through more SEs. IDK if that makes sense. Hopefully Lupron won't bring too many my way and then I can maybe enjoy some summer.

    Did you or the rest of yall have many SEs from just the Lupron? Or did the SEs hit when you started the AI?

    Thanks in advance.

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