Lupron shots starting this Friday

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Toyamjj
Toyamjj Member Posts: 151

Hello!

About to start getting lupron shots monthly, have heard horror stories! Mainly about vaginal dryness. Please share the good, bad and the ugly!


Thanks

Comments

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited February 2019

    make sure you take motrin before you go to stave off the "lupron headache"

  • FarAwayToo
    FarAwayToo Member Posts: 255
    edited February 2019

    Well, basically, you will be in menopause. Instant menopause is hard, there is no denying it.

    For me, it came somewhat slowly with chemo, but then I was on Lupron, and after 5 months of that I got my ovaries out. The worst was after oophorectomy, however, I had vaginal dryness set in about 3 months after starting Lupron (didn't have it on chemo, even though I had hot flashes and no period). I was 40 at DX, 41 when started Lupron.

    For me, vaginal dryness is the least of my worries. Hot flashes were brutal for a while, but now I'm down to 5-6 a day (used to have 20-30). I also was lightheaded for a month, this is now gone. And of course joint and muscle pain is no picnic. But I would take that over recurrence any day.

  • OTMom
    OTMom Member Posts: 121
    edited February 2019

    I get my first one on Monday. We can commiserate.

  • Toyamjj
    Toyamjj Member Posts: 151
    edited February 2019

    can’t wait to compare notes, lol

  • Toyamjj
    Toyamjj Member Posts: 151
    edited February 2019

    wow sounds rough, did you get your ovaries out because you couldn't stand the shot anymore? I asked my dr if I should just have mine removed and she said to start with the Lupron shots and see how I do. Imfinished having kids so I wanna do whatever has the least side effects.

  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited February 2019

    Following. I'm supposed to start as soon as my insurance approves it. I'll be on Femara once I have my first Lupron. I'll be having an oooh by the end of the year.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited February 2019

    I have been on Lupron injections since April 2017. Initially I would get a pretty severe headache that would last about 5 days after the shot. Tylenol Motrin Advil excederin - take whatever works. I also would take a preventative antinausea about an hour before the shot - as it can cause some nausea I was told by my MO to do this.

    I felt like my vagina started to “dry” up within a couple of months. It wasn’t really until about one year later that I really discovered that the tissues had thinned as I bled a lot while having sex.

    Lube is your best friend during sex! Also, do some research on the best lubes to use. They are not created equal.

    I also bought a kit to help with keeping the strength and integrity of my vaginal tissues and muscles strong. It is like a set of vibrators that are smooth and range from the size of a finger to much bigger. Honestly, I have no libido so I haven’t used this in a while. I need to start again!

    If your doctor prescribes Premarin for vaginal dryness (a vaginal suppository), I recommend asking for them to prescribe Estriol instead. It’s much gentler and with fewer side effects and strange ingredients. I got sick from the Premarin immediately - it is made from the urine of pregnant horses (hence, the word “Marin” in the name...mare, like a female horse, yup!)

    Hopefully you won’t have to do all of this but these are things I wish people had told me about. I was very frustrated to have to figure this all out on my own. I’m going to someday write a brochure for my MOs office lol 😂 lo

  • Toyamjj
    Toyamjj Member Posts: 151
    edited February 2019

    Thank you soooo much for taking the time to detail this information out for me. I’m sorrry we are all having to go through but I’m so grateful to be alive! I’m going to reach out to my dr for the anti nausea medicine and buythat kit for my vagina ASAP.

  • mjl432
    mjl432 Member Posts: 10
    edited March 2019

    Hi All. Been on Lupron shots for 3 months along with Tamoxifen after a bilateral mastectomy and four rounds of TC chemo. Haven't felt terrible but haven't too well either...not too bad hot flashes, fatigue, achy, insomnia, some seeming nerve pain (possibly from surgery?), and some other random weirdness. One thing has been every once in a while I feel kind of like I have a swimming cramp underneath my lower left ribcage. It has been fleeting so far and not worrisome but today has stuck around all day (along with tiredness and a little bit of queasy today) and is freaking me out. My family all had colds this week and I also worked out with weights the other night, so maybe just sore and otherwise sick? But it feels like it's underneath my ribs, not in the muscles over. Should i wait and see or call my primary care doc?

  • mellee
    mellee Member Posts: 434
    edited March 2019

    I'm going to be starting Lupron soon — in the middle of radiation treatment! I'm very nervous about it, but I recurred on tamoxifen so I have to switch to an AI.

    Thanks for the info, LovefromPhilly! My MO has told me nothing about those issues.

    Also, are you guys taking prophylactic medication for your bone health? One MO I spoke with recommended it from the start, but another said she wouldn't prescribe it unless I started to show signs of osteoporosis.

  • Toyamjj
    Toyamjj Member Posts: 151
    edited March 2019

    OTMOM,

    I know you don't get your shot till Monday but figured I'd update you on my experience thus far...tresjoli2 kindly shared on my post to take molten prior to the shot so as not to get the lupron headache that I have been reading about. But I decided not to because I wanted to see how my body was going respond to the drug naturally. Thankfully I never got the headache that I've read about. Also the nurse who injected warned me that the next day (today) that I might feel like I have a mild flu, body aches and nausea. Thank god I don't have those symptoms either. I am feeling a tinge of very mild uterine cramping similar to what I get days before starting my period. While I'm optimistic and happy for now I realize as I get further into the drug I will surely encounter some unwanted and possibly severe symptoms.

    Ladies...On another note I'm starting to have an irrational fear so I need you ladies to talk me off the ledge. Im noticing most woman have had some form of chemo as part of their treatment. Im not getting chemo, my dr recommended Lupron Tamoxifen and radiation. My irrational fear comes in because I'm afraid that the breakdown I had in her office when she was telling me my oncotype score made her think that I couldn't emotionally handle chemo and since my score is 22 and in the "grey area" maybe scrap chemo and go hard with the estrogen suppressant drugs. I feel like emailing her and asking if that was the case? Because while I am terrified of chemo I want to make sure I'm doing everything possible to beat this. Do you think after seeing me breakdown she changed my treatment plan?

  • mellee
    mellee Member Posts: 434
    edited March 2019

    Hi Toyamjj, I doubt your oncologist would make chemo decisions based on your emotional state. But I think you should ask her to clarify her recommendations, so you feel better about the treatment plan.

    You may want to bring up the phase 3 results of the TAILORx study which recently came out, which clarified Oncotype treatment guidelines. They found that women 50 years old or younger with a recurrence score of 16–25 received a small benefit from chemotherapy (for scores between 21-25 for women younger than 50, the estimated benefit is 6.5%). However, many experts believe this benefit is due to the endocrine suppression caused by chemotherapy-induced menopause. Since you're going to be suppressing your ovaries with Lupron, your MO might think that will provide the same benefit as chemo without the risks.

    However, I would ask your MO why she recommends tamoxifen over an AI. The SOFT and TEXT trials showed that tamoxifen + ovarian suppression is superior to tamoxifen alone in premenopausal women, but the biggest reduction in risk comes from adding the AI exemestane to ovarian suppression.

  • Toyamjj
    Toyamjj Member Posts: 151
    edited March 2019

    HI Mellee,

    Vey well put! I'm actually going to ask her exactly how you phrased it. I find that I get so nervous and emotional at times that my words don't come out right. You seem very knowledgable, thank you for sharing!

    I noticed in your diagnosis section you put needle biopsy seeding, what does that mean?

  • mellee
    mellee Member Posts: 434
    edited March 2019

    You're very welcome! I know how stressful these consults can be. I go in with a written list of questions, so I don't forget what I want to learn and ask.

    Needle biopsy seeding is something that can happen during biopsy, although it is believed to be quite rare (although I'm starting to believe it's not as rare as many think). As the biopsy needle goes into the tumor, disrupting it, and then is removed through the breast, there is the potential for cancerous cells to "seed" the track the needle travels. It is believed that the body will often take care of these cancerous cells on its own, or that radiation, chemo, or hormonal treatment will kill them off. But sometimes, as in my case, these "seeds" take root and grow. There isn't a whole lot of research on these types of recurrences, but the literature that does exist recommends that the entire needle tract, including the skin entry point, be excised during surgery. Unfortunately, that is not yet the standard of care.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    hi! Happy to provide my experiences and what I learned. Would be fantastic if others don't have the same things happen to them. Maybe my stuff was more rare?

    As far as caring for my bone health, I do take a d/ca+/mg+/K/C supplement combo plus 5000ius of vitamin D and extra vitamin C a day. I also try to exercise 3-5 times a week with weight bearing exercises.

    I do have bone Mets, and they were pretty severe (now healed apparently), and so I also take Xgeva, Lupron, letrozole and Ibrance. And it is recommended to double up on the Ca+ supplement 3 days prior to and after the Xgeva injection.

    Bleh! I can't believe I am writing all this - sucks to be so knowledgeable about this topic!

  • OTMom
    OTMom Member Posts: 121
    edited March 2019

    Bone health-wise, my MO had me do a dexa scan before deciding on anything. Unfortunately, I already meet the criteria for osteoporosis in my spine and osteopenia in my hip, so we're definitely starting bone heath stuff now. I'm supposed to take calcium and vitamin d daily and we'll do zometa infusions every 6 months and repeat the dexa to make sure I'm not losing bone. Kind of terrified of all of this, but hoping that at least the part where my periods stop is helpful. I was in the process of figuring out that I have endometriosis when I got the BC diagnosis, so we're going this direction instead of tamoxifen as a way to hopefully treat both. We shall see...

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited March 2019

    I only got chemo because I was triple +

  • topdubu
    topdubu Member Posts: 23
    edited March 2019

    Anyone have experience after Letrozole? Looks like I am going to cycling into new territory as the Letrozole/Lupron/Ibrance has seemed to have lost some of its punch. Of course, I'm looking for a silver lining in all this and I'd sure like to believe that the Letrozole chemically induced arthritis would subside. Any words from experience would be appreciated.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    hi topdubu - sorry to hear this! Are you having more progression in your lungs and bones? I am not certain about this but it seems like with lungs doctors prescribe Afinator and Arimidex I believe? You may want to check in on the Ibrance thread for this.

  • topdubu
    topdubu Member Posts: 23
    edited March 2019

    Thanks. They are talking Faslodex but not sure combined with what yet. This will interesting. No new lesions--markers up and existing bone mets, especially in the hips are lighting up more. The quote of the day was "So, cancer is starting to become active again". Normal labs next week to check neutrophil levels for ibrance continuation. Another 30 days or so after that to redo all scans and labs to see the direction.

  • Toyamjj
    Toyamjj Member Posts: 151
    edited April 2019

    Had my second lupron shot March 31 and I'm noticing achiness/soreness in one of my knuckles? Could this be a side affect?

    I complete radiation this Wednesday and on May 1 I begin taking anastrozole, I heard my joints will be affected by the anastrozole and curious to know if I can expect that from the lupron shot otherwise my mind is going to go to the "dark place" thinking something more sinister is causing the joint pain in my finger. Please talk me off the ledge lol

    Thanks
  • FarAwayToo
    FarAwayToo Member Posts: 255
    edited April 2019

    Toyamjj - yes, it's a very common side effect of AIs, but could also come with ovarian suppression, because you are lacking estrogen. I would mention it to your doctor, but I wouldn't worry about it too much, unless it interferes with daily activities (like typing, writing etc)

  • Toyamjj
    Toyamjj Member Posts: 151
    edited April 2019

    Thanks that makes me feel better to know!

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