4 months on Lupron and still getting a period

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Toyamjj
Toyamjj Member Posts: 151
edited July 2019 in Hormonal Therapy - Before, During, and After

Hi,

Im extremely nervous that because I'm still getting a period does that mean that lupron and anastrozole are not working? Ive had 4 shots and only missed a period the second month while on the shot. Sadly today I got my period. The shot I received for the month of may (4th shot) was a double dose because they knew that I was still getting my period so they up'ed the dosage. Im due for my next shot on June 24th. Ive been taken anastrozole for 41 days now, Im concerned that because I'm getting a period does this mean the meds are not working?

Worried out of my mind that all of these months I haven't been protected the way I thought was I by the medicine I've been taking...

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Toy - has your MO checked your estrogen levels prior to the injections and during at all? It's my understanding that that is supposed to be the standard of care when on Ovarian Suppression, to ensure your horomones are medically shut down.

    There is a thread Women on Ovarian Suppression + Hormonal Therapy, that you could ask. They are all on Ovarian Suppression. They may be more familiar with your concerns. I've only been lurking there as that is my next step since Tamoxifen failed me.

    Hope others pop by soon with help. IMO (I'm no dr obv) you shouldn't be getting your period...but maybe it takes time for it to stop all together? IDK. Hang in there.

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  • Toyamjj
    Toyamjj Member Posts: 151
    edited June 2019

    Thanks Spoonie No I haven't had me levels checked, I'm going to call my doc tomorrow. Damn I'm really nervous now, ugh I hope I haven't slipped through the cracks in regards to medical care.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Good luck! Sometimes we have to be the squeaky wheel, don't be afraid to speak up. This is your body, your life. You deserve answers and trust in your team. Hope the phone call tomorrow can give you a little bit of both. Keep us posted.

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  • Toyamjj
    Toyamjj Member Posts: 151
    edited June 2019

    Probably doesn't make a difference but I just want through my calendar and I've only had 3 shots not 4. So my next shot will be my fourth.

    I did end up posting on the link you recommended, Thanks Spoonie. Have a good night and I will update once I hear anything.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2019

    Toyamjj, perhaps they can give you Tamoxifen instead of anastrazole until they are certain your E2 (Estradiol) and FSH (follicle stimulating hormone) are at post-menopausal levels. Tamoxifen can be used for premenopausal bc and postmenopausal bc. With tamoxifen you can’t trust lack of periods to equal postmenopausal, but the blood tests tell the truth. You can also talk about whether an oophorectomy would be appropriate for you. Another thought, see if your oncologist or gynecologist will order the blood tests now so you will have the results for your appointment.

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  • Toyamjj
    Toyamjj Member Posts: 151
    edited June 2019

    Well now I have something more to worry about, yesterday While I was applying lotion to my back I noticed a semi soft lump that is moveable on the opposite side of the breast cancer, when I googled it lipoma came up. But obviously having recently completed breast cancer treatment my mind has gone to the dark place and now fear its something more serious.I called my doc this morning and she got me in tomorrow at 10:30 but as we all know the wait to see what this could be is going to be excruciating. Anyone have similar experience where it did in fact turn out to be a lipoma? Please share, been up half the night googling and crying all morning.

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  • Toyamjj
    Toyamjj Member Posts: 151
    edited June 2019

    And just to update regarding the period, it turned it I was just spotting so I didn't turn into a full period. And my doc said that because with this last shot it was a different dose (Doubled) that spotting is to be expected. However on my June 20th appointment they will check my levels. lol but now back to my movable lump on my upper back near the shoulder blade... Thoughts?

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited June 2019

    toy- I’d be nervous about the periods too. I’d also be wary of a higher dose of Lupron. That stuff comes with its own set of side effects. I was on Lupron plus Tamoxifen specifically because of the chance of incomplete ovarian suppression. I ended up having to stop Lupron and switch over to zoladex, still with Tamoxifen. Doing well on that combo.

    I have definitely been panicked by lumps, so I know the feeling of “OMG”. Hope it’s nothing. My older daughter had a surgery to remove a lipoma a week after my mastectomy.

    I’m surprised no one checked your estrogen before starting you on AI. Shame on them.

    I hope everything goes well at your appointment and things get straightened out soon!

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  • Toyamjj
    Toyamjj Member Posts: 151
    edited June 2019

    Just got my hormone level results online but doc office is closed. can anyone help tell me what it means? FSH 5.3

    Thanks

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    IMO it means you are still PreMeno despite the Lupron. I'm no doctor, but looking at the range of levels from Mayo, it seems that way.

    What have your past FSH levels been when tested?

    Hopefully your doc can you the details tomorrow as to what the next best steps are.


    "According to Mayo Medical Laboratories, the reference values (most typical values) for FSH are:

    • Males older than age 18: 1.0-18.0 International Units Per Liter (IU/L)
    • Postmenopausal women: 16.7-113.6 IU/L

    In premenopausal women:

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  • Toyamjj
    Toyamjj Member Posts: 151
    edited June 2019

    How discouraging Ill be discussing next steps today!

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  • Nas
    Nas Member Posts: 102
    edited July 2019

    I have been in Lupron for the last one year and in my last blood test which was 2 weeks ago , my mo told me my estrogen level is still premenopausal , she didn’t seem concerned though, she said at my age (40) it is completely normal as my body is waaay too premenopaus..
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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited July 2019

    Toy, have you spoken further with your MO yet? If so what's the plan?

    I saw my MO today for my first Zolades (was supposed to be Lupron but a change, same deal) shot. They won't even give me any Arimdex until I'm fully medically menopausal via hormonal panels. They are hoping by September.

    Nas, do you know if hormone panels would differ for those on Tamoxifen and those on an AI like Toy is, even though both of you are on OS? I have no idea what the standard should be for either.

    Everyone is different and I'm no doc obviously, but today when I asked my MO if I tolerate the Zoladex could I start the Armidex early. She said absolutely not. It would do not good. I'd have the SEs of the drug without any benefit until I'm menopausal. If it were me, I would want answers as to why still having pre-meno levels of hormones would be conducive to my treatment. That's just me though. :)

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