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After first shot of Lupron

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Hi

I am new to this forum. My oncologist recommended a course for Lupron shoot every 3 months for 5 years as I am premenopausal. Then add Tamoxifen for 5 years after my radiation, which is schedule to start next week. The Lupron shoot was done in the middle of my cycle so I had my period at the regular time. But instead of ending as expected, it has drag on with light spotting for about 3 days now. Before I give a call to the oncologist office, I want to know if anyone has experience something like this. Just trying not to freak out😐️.

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  • orangeflower
    orangeflower Member Posts: 95
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    One thing to keep in mind is that the three month Lupron shot might not sufficiently suppress your ovaries. This happened to me. They had to switch me to the one month shot.

  • zen1028
    zen1028 Member Posts: 70
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    Thank you orangeflower. I left an email to the doc lets see what they say. Hope this "period" ends soon.

  • zen1028
    zen1028 Member Posts: 70
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    Just an update, found on other blogs/discussions for endometriosis, and per oncologist office, lupron can created havoc on the cycle. Some are ok some are not sooo good. My bleeding/spotting ended 5 days after my suppose last day. Now into January and so far no period but then I am also in radiation now. Could be my anxiety putting that off?…not sure. But I did notice that my anxiety level has increased this month. Dont like this feeling or the 3x "teenager" hormone fluctuations. Going to ask Oncologist on alternatives. In hindsight, if I could have a sense on how I am "feeling" right now, I would have chosen chemo or no lupron or any drugs to induce menopause.

  • orangeflower
    orangeflower Member Posts: 95
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    Zen, the Lupron is supposed to stop your cycle entirely. You are not supposed to be getting periods.

  • zen1028
    zen1028 Member Posts: 70
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    Agreed. But I think it was done mid-cycle, that was why I still had my period in December. But will be asking my MO to take me off this drug. It has increased my anxiety level super high. And I think that the anxiety level is contributing to my BP issue. I dont get anxiety from someone just coming over the house or someone pining me at work, but I do now.

  • orangeflower
    orangeflower Member Posts: 95
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    Sorry to hear you can't take the Lupron. I couldn't either. It can be a difficult drug for a lot of women.

  • zen1028
    zen1028 Member Posts: 70
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    Just wrapping up on this thread. Spoke with my MO yesterday and told him I know the risks on not taking the lupron. The emotional roller coasters, and the anxiety were from the lack of estrogen so it wont matter what I take for ovarian suppression. The other option he offered was doing chemo which I said no to. I dont know how I would tolerate chemo, with young kids at home, dont think it is a good idea for them to see mom not in "super" mom state. But with the blood pressure meds, the BP has been in normalcy this past two weeks. Could be the lupron wearing off but anxiety is way less too. Next up, have to start tamoxifen.

  • zen1028
    zen1028 Member Posts: 70
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    Ok, been 4 months since the first Lupron shoot and my period is still not here. Anxiety maybe better but now I got negative/depressive thoughts coming thru. It may not be this drug but I cant discount it until I know it is out of my system. Asking other members here, how long did it take Lupron (3.75 mg slow release) to get out of your system? Online is saying anywhere from 3 - 8 month since last shoot.

  • zen1028
    zen1028 Member Posts: 70
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    Going to use this to document my Lupron journey. Hope this will help others whom are going to take it or think about taking it.

    Its been over 5 months since my first shoot of Lupron in December 14, 2023 (slow release 3 month) and I still don't have my period. MO order an estradiol lab in April and I am at 11 (still in menopause). But this month of May, my hot flashes are stronger and more frequent than last month. Anxiety feels like it WANTS to take over again, but I think the acupuncture and therapy are helping to keep that at bay. But anxiety is reminding me often that it is still there nonetheless. Negative thoughts are less. Appetite still bad and my weight looks to have plateau, which is good news somewhat as I am not 'loosing' anymore. Working with nutritionist on how to 'pack' back on the pounds, need to add more calories to my food intake. So food is not that enjoyable but more so as a chore these days. I do hope the period is back soon as that is the start of me getting back to 'square one'. I need the mentality I had going into this to continue on this journey and fight.

  • moderators
    moderators Posts: 8,211
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    @zen1028, thank you for updating us! Your experiences with Lupron and insights are incredibly helpful. Thanks!

    The Mods

  • zen1028
    zen1028 Member Posts: 70
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    Thank you Mods. I invite others whom have had Lupron to write their experiences here. I found from a lot of Endo boards on how they were feeling. I personally have no good experience while on this drug, which is still working in me. Others may not feel the same as there is no 'one size' fits all in terms of any drug therapy.

    I am feeling "better" these days but that could be it is moving out of my system. However, base on what other chatter have been mentioning online, even if I have my period, it does not mean all side effects will go away right away. It could take a year or more and some have mentioned that they have permanent side effects that stayed regardless. I wish my MO have giving me more warning or that I did do more research on it before agreeing to taking it. It took from Jan to March to get myself off blood pressure using holistic means. That was triggered by the anxiety that was induced, and my cardiologist have put me down as situational hypotension. Some days that still happen and I need to use coping skills to calm myself down before I reach for a BP pill.

    Now I am working on diet as I feel my weight lost was triggered by the anxiety as well due to too many youtube videos on what to eat and not to eat. I need to find the right balance on everything to continue until we have a real "cure" and "prevention" on cancer, not just breast but all cancer.

  • salamandra
    salamandra Member Posts: 745
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    I've been on Lupron (monthly) since the end of January, so far all monthly shots. I'll get a 3 month shot soon. Anastrazole was added in on the 3rd month.

    I've had increased stiffness but moving and doing stretches and exercises has helped with that. I've had hot flashes that got especially bad (frequent) after the anastrazole was added. During the day there were just annoying but my sleep is already poor and they basically destroyed it. My doctor started me on oxybutinin to help with the hot flashes, which it did, but it gave me bad dry mouth and dry eyes and I think was bad for my sleep on its own.

    I took a break from both the anastrazole and then tried with just gabapentin and the lupron. After a few weeks I added back in the anastrazole. It seems to be going ok now.

    I was worried about my skin but that seems ok. I do take hyaluronic acid oral supplements as well.

    I believe I've had some vaginal side effects as well, and I'm not sure whether these are just the lupron or the combination of lupron and anastrazole. I had 2 (mild) UTIs in a row which I've never before had in my life except if I didn't pee after sex, and I wasn't even having sex. Then when I did try to have sex, I felt much dryer and it felt uncomfortable in a way I'd never felt before.

    My oncologist suggested trying a vaginal moisturizer, and I ordered one with hyaluronic acid that I'm waiting to arrive. In the mean time (waiting for it to arrive), going slowly and using lube seems to have woken up my vagina a bit and I'm already doing better.

    If the gabapentin keeps helping for the sleep and the sexual stuff works, then the other side effects are manageable for me with activity, exercise, stretching, etc.

  • zen1028
    zen1028 Member Posts: 70
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    Thank you for adding to this thread salamandra. I have seen from other forums (colorectal and endo) that the monthly shoot of lupron causes less issues than the 3 month. I think if I have had the monthly instead of the 3 month, it may not be as bad as I have it now. But then again, this is not a one size fits all.

    But just a thought, from online searches the monthly shoots takes about 6-8 wks to work out of your system from your last shoot. The 3 month, could be 6-8 months to work out of your system from your last shoot. The working out of your system is the ovarian suppression not all side effects, inclusive of hot flashes. Those could take months to years to work out depending on the individual.

    As of today, I still have not had my period and anxiety is still prevalent as I had a trigger last week and ended up in the ER. I thought I was having a stroke and all CT scan and lab says I was normal with no issues. Just my 2 cents. I want this drug out of my system sooo bad…I want my life back…

  • zen1028
    zen1028 Member Posts: 70
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    I think the Lupron is wearing off but NOT worn off. I hope it is just a waiting game, but this is one hell of a drug. I dont know if I said it here but I have mentioned to friends, taking this drug is one of the worst decisions I have made in my life so far. Even my therapist noticed a difference in me on our last session in terms of the conviction of my voice. She said it is "there" today whereas it was not there when we started talking. Maybe something good is happening or could just be the effects of the acupuncture. Either way I am still not back on track to square one until I have my period.

    Next week will be exactly 6 months since my shoot of Lupron in December and 3 months since March, when the 3 month shoot of Lupron should have "worn off". I still do NOT have my period.

    Just messaged my MO to tell them and if they have any labs ordered to test progesterone levels as well. This is sooo not good for my anxiety. I just saw on a forum on Reddit where one commentor says her period returned in 7 months, shoot was in December first period was in July.

    Brain fog, anxiety, and hot flashes are still part of my day to day…those have not gone away since March. I dont know if tension headaches are part of the side effects. If it is, then they have not stopped since March either.

  • fortytwowithidc42
    fortytwowithidc42 Member Posts: 2
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    Salamandra- your situation seems very similar to mine....however, we are all slightly different when it comes to BC I'm learning. My doctor mentioned Uber lube and Bonafide Revaree Plus for the dryness. It has helped a lot.

    I'm on the second does now of Lupron. They want me to also take an AI called Aromasin, but I'm not sure I want to. With lupron and kadsyla already in my system, I'm kind of at my end here in being motivated to add one more thing to my body. I want to live, but at what cost? Quality of life is important too. I'm still undecided on whether to take it or not. The docs did say I could switch to tamoxifen if I needed to instead of Aromasin. Now to Google to research yet another drug.

  • zen1028
    zen1028 Member Posts: 70
    edited June 16
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    @fortytwowithidc42, the type of drugs that our MO mentions depends on our each individual situation. From what I can gather on all the googling I have been doing, and one of the reasons breast cancer or any cancer have not had a preventative vaccination at this time, is that it is kinda unique to each person with some underlying similarities like HR/PR, HER2, etc.

    But I agree on reviewing online for side effects and what these drugs can do for you in your situation. I kicked myself for not doing that on the Lupron 3 month release. This is why I started this thread and now using it to log my journey of this from Dec 2023 to current. And it has passed the 6 month mark and I still don't have my period. Still doing my weekly acupuncture sessions, and that does help a lot. And once I finally get my period back, will revisit the start of Tamoxifen at like 5 mg and see how that goes.

  • zen1028
    zen1028 Member Posts: 70
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    Got new labs today to check on FSH and Estrodiol numbers and it looks like I have moved to the "luteal phase". No idea when period is coming though, hopefully in 2 weeks. Last night had something that I have not had for a LONG LONG time, like since March, an anxiety attack that triggered elevated blood pressure. Not sure if that is from the surge of estrogen getting back to my body, but it was not good and resulted in me having bad sleep. Waking every 2 hours and my heart rate was in the 70s vs the usual 60s (according to apple watch). I hate this drug so much. So lucky my acupuncturist has an opening today to see me. I need that so bad.