Long-term Lupron injection

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  • kyliet
    kyliet Member Posts: 687
    edited April 2016

    LoveJoyPeace, I will have been on Zoladex for 5 years next February. I will come off it for a few months and then get my levels checked, I will be 49.

    My onc said there are some trial results due out towards the end of this year regarding whether 10 years on Als helps. So we will see, but if I am premenopausal I don't want to go back on tamoxifen as I had horrendous side effects.

    I really don't know which side effects are from what treatment, but when I have been late with my zoladex injection I get migraines, which I always got when my periods were due. This makes me think my hormones are still raging. I am definitely better on Zoladex plus Al than I was on tamoxifen.

    Also it is worth assessing the side effects of the different Als, I take Arimidex, but couldn't cope with the others.

    Sorry about the essay, hugs x

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  • Goodie16
    Goodie16 Member Posts: 446
    edited April 2016

    I just had my 3rd Lupron injection too. My onc should be calling today with my levels. If everything is where it should be, I'll start on Arimidex. I'm hoping to tolerate it's side effects better than I did Tamoxifen. I don't really have any side effects from the Lupron aside from hot flashes. I do get a bad headache the day after my shot, but I've always gotten a headache before my period was about to start too so I assume it's all hormone related.

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  • ayr1016
    ayr1016 Member Posts: 228
    edited April 2016

    argh! Just got a call from my dr office and they said my estrogen level is to high to have had 3 Lupron shots already. Background: I am doing neoadjuvant hormone therapy (Tamoxifen + Lupron) to shrink tumor. I was to shocked to ask her what the level was because she was asking if I was taking any supplements that would effect it (I am not). So, she said that I would probably get a higher dose next time.

    Question: So far (haha, I say that because it is probably coming) I do not think I have had a hot flash. I have had chills. So, with the increased dosage, would this mean hot flashes? I am bummed because I believe the Lupron is giving me my side effects (no tamox) and now I'm probably in store for more joint/muscle pain.

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  • cider8
    cider8 Member Posts: 832
    edited April 2016

    I didn't know there would be study results on 5 vs 10 year. I've been on Zoladex and arimidex for 2 1/2 years. I do not like it! But it's working. Tamoxifen failed me. Part of me hopes 10 years doesn't make a difference. And part of me does. I just wish the side effects weren't so tough.

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  • maxdog
    maxdog Member Posts: 147
    edited April 2016

    Hi all,

    I've been MIA for a bit,actually due to feeling really well! I started drinking Shakeology in February and it has really helped all of my side effects.I have been able to exercise consistently which is a nice.change. if anyone wants more info on it,PM me and I can.forward info. I haven't had any blood work to test my estrogen levels. I believe my oncologist just goes by symptoms-no period.and hot flashes.

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  • kyliet
    kyliet Member Posts: 687
    edited April 2016

    cider8, sorry if i wasn't clear. My onc said it is the results of Als for 10 years they are checking. The thought of staying on Als for another 5 years is not appealing at all.

    SOFT trials were for 5 years zoladex with 5 years Al. They got great results with this.


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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited May 2016

    I just turned 55, have been on zoladex/lupron for 2.5 years. They thought for sure I would be on lupron for a year because chemo shut down my periods, but they are measuring my LH ever 3 months and no sign of menopause! In fact I am now thinking maybe I should just get my ovaries out and be done with this!

    Cider, we recurred at the same time. Does your MO say you will be on the AI 5 years or 10 or forever? Truth is, I'm afraid to ask. Part of me is afraid to go off at 5 years, part of me doesn't want to hear "10" or "forever".

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  • Lelick
    Lelick Member Posts: 1
    edited February 2018

    I am 3 months into Lupron injections and can not take the excruciating back pain. I have decided to stop the injections. Not sure what else I can do but I can barely function from the Lupron. I just hope it wears off and I don't have permanent damage in my spine.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2018

    Lelick, we're so sorry you're in such pain. Our suggestion is that you talk to your doctor before making the decision of stopping treatment. You may need some additional test to measure your bone density, or some medications to release pain or to strengthen your bones. Please let us know how you're doing. Thinking of you!

    The Mods


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  • gkbuser
    gkbuser Member Posts: 348
    edited April 2018

    lelick, how you doing?

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  • jmboone13
    jmboone13 Member Posts: 1
    edited March 2019

    Hello and I’m new to posting on this site, but would love to know if anyone’s had the same experience?!I have been on monthly Lupron injections for over a year and everything had been going fine. I also take Exemestane daily. For the past few weeks I have been extremely emotional and then on Friday I realized why. My period started again for the first time since 2016 when I was diagnosed. I’m 39 now and I went to the gynecologist about 3 weeks ago she did an exam and said my ovaries are almost nonexistent?! I called MO on Friday and spoke to the nurse practitioner. She said this is very unusual!! She wants me to come in for bloodwork on Monday and then go to the gynecologist again for an ultrasound. I’m trying not to panic, but that can be very difficult! Has anyone had any experience like this? Thanks for any info.

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  • jessie123
    jessie123 Member Posts: 532
    edited March 2019

    Just be very sure that you get DEXA's regularly. I was on Lupron when it first came on the market in the very early 90's. I was only on it for 3 months. Had no side effects that I knew of at the time. However, a couple years later I read that it causes bone loss so I had my first DEXA at about the age of 43. My hip bone loss was extreme. It scared me to death. It took until I was in my 50's for the bone to just grow back to osteopenia. I didn't take the fosomax because it caused indigestion. My bone grew back on it's own, but it took a very long time.

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  • mjl432
    mjl432 Member Posts: 10
    edited March 2019

    Hello all,

    Been on Lupron and Tamoxifen for four months, started one month after chemo. Some days feel OK and some days feel like I can't tolerate the side effects. Somehow instead of gaining weight on them I have lost weight, and with some bone and muscle pain, especially in my ribs and under my ribs, and some insomnia and now in the last few days some heart palpitations I am kind of freaking out. I have a heart murmur and a few years ago before my diagnosis I had some palpitations and was checked out and told they were common for women in their 40's with mitral valve prolapse. I am worried the Lupron is impacting my heart, but perhaps that is because I am also having pulsatile tinnitus (started before my diagnosis), where I hear/feel my heartbeat in my ears, which was also checked out, and no physical cause was found, so I was told to just listen to white noise. I can't tell what is post-mastectomy pain, what is Lupron and Tamoxifen, and what is serious or not. Glad to have this place to hear from other folks.

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