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Your ovarian suppression experiences?

buttonsmachine
buttonsmachine Member Posts: 339
edited February 2022 in Young With Breast Cancer

Hi all, my MO wants to start me on monthly Zoladex injections soon. I'm nervous about it, and I don't really know what to expect. Unfortunately my cancer grew a lot on Tamoxifen, so that's out.

How was ovarian suppression for you as a young woman? What were the main side effects you stuggled with? I'd like to hear from others who have been through it, aside from just reading the textbook description. Any info is appreciated!

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Comments

  • elainetherese
    elainetherese Member Posts: 1,625
    edited June 2018

    Hi!

    I've been on Zoladex since 2015 so I could take Aromasin. Because I started both at the same time, it's hard to separate the side-effects. Initially, I had hot flashes, especially in the evenings. I was very moody, so MO prescribed Celexa, which cleared that up. I gained about 20 pounds (down 5 pounds now after working on that). Finally, I developed full-blown osteoporosis, which we're now treating with Prolia. Otherwise, it's been OK. Best wishes!

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited June 2018

    buttons- I get Lupron injections for OS, which is similar. I started the Tamoxifen at the same time, so like ElaineTherese, it’s hard to separate the side effects. It’s been 10 months and I’m doing ok. Mega hot flashes, and trouble sleeping, but not much else. I would recommend a bone density scan before you start.

  • sarah_sunflower
    sarah_sunflower Member Posts: 7
    edited July 2018

    hi how is your experience with prolia? I was on Zoladex for two years and now my onco is recommending Prolia and I read about all the side effects.

  • sarah_sunflower
    sarah_sunflower Member Posts: 7
    edited July 2018

    Hi

    I was on Zoladex for two years, last one was Sep 2017. I had my injections every three months. The first month was bad for me. I felt fatigue, moody, my eyesight was bad and I experienced severe joint pain. After one month, the side effects would begin to ease for me and by the third month I would start to feel more like myself. Since my cancer was also ER/PR+ , Zoladex has kept the cancer away, according to statistics. Since the last shot in Sep2017, I feel much better now. Except my last DEXA (bone test) shows I have osteopenia and I have been asked to go on medication to increase bone density.

    I hope that helps and I didn't worsen your scare.

  • AnxietyGirl85
    AnxietyGirl85 Member Posts: 37
    edited July 2018

    I'm triple-negative, so hormones aren't a concern for me, but I did opt for Zoladex during chemo, just because I'd kinda like to not be permanently menopausal just yet (I'm 33 - was 32 at diagnosis) and the hope was that the Zoladex would shut down my ovaries and protect them from the chemo.

    I had four injections, one every four weeks (so only four months), and I'm just about two months out from my last injection (and 5 and a half weeks out from my last chemo). I had no side effects aside from no periods, not even a single hot flash, and I'm currently waiting to see if my periods will come back, the doctor said it could happen any time. I don't know if any side effects would have manifested themselves if I'd been on it longer, but in the short-term, I didn't have any issues with it at all.

    About the only warning I'd have for you, from my own brief experience, is to be aware that the needle for it is pretty huge - it's an implant so it's a heavy gauge needle and it can look pretty scary. It's super-quick to get the injection so it's really not too bad, just, ya know, maybe don't look at it.

  • gkbuser
    gkbuser Member Posts: 300
    edited July 2018

    elainethere, do you think the osteoporosis was more from the aromatase inhibitor or the zoladex or just low estrogen from both. I have been on zoladex since Jan 2017 and letrozole since march 2017. I have a baseline DEXA that was normal but am told I won't have another scan for two years after that. That just doesn't seem very proactive to me. I wish they would do something to prevent the osteopenia or osteoporosis rather than just wait till it happens and decide to start a Sona Med. I'm doing some things on my own like taking calcium vitamin d and vitamin K2 along with train to increase my weight bearing exercises like walking and weight lifting. But in the end I don't know if it's going to be enough. Would people be willing to share what they're doing to protect their bone density while they're on anti estrogen meds? and is anyone actually been done with hormone therapy and maintained their bone density?

  • elainetherese
    elainetherese Member Posts: 1,625
    edited July 2018

    gkbuser,

    My first dexascan was shortly after I started Zoladex + Aromatase inhibitor, and it showed that I was borderline osteopenic. My MO told me to take Calcium + Vitamin D (Caltrate) twice a day after that report. Two years later, I had full-blown osteoporosis, and was at high risk of bone fracture. My MO immediately prescribed me Fosamax after that report, and more recently, got my insurance to pay for Prolia. (I don't get any side effects from the Prolia, by the way.)

    I've talked to my doctors about having a dexascan yearly, but they've told me that it might not show much change to my bone density. By the two year mark, the impact of the meds (or lack thereof) on my bone density should be more apparent.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2018

    Thank you everyone for sharing your experiences. I had my Zoladex shot a couple days ago, and the shot itself wasn't too bad. They iced my stomach for ten minutes before the injection since it's a larger gauge needle, and it was over quickly. I took anxietygirl's advice and didn't look at it. ;-) No side effects yet, but my MO said it takes a couple weeks for the Zoladex to start working.

    My MO did not mention anything about a DEXA or bone density scan, and I forgot to ask about it because there were other more pressing concerns. Maybe she is assuming my bone density is fine because I'm 34 and was physically active before cancer? Or maybe it's something we'll do before I start the AI's, which in my case won't be until after I finish six months of Xeloda? In any case, I will ask her about it at my next visit in three weeks.

    Did most other people in their 30's get a bone density scan? Does a PET scan give any information on bone density?

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited July 2018

    buttons- I had to request one. It’s also one of the reasons I’m doing OS plus Tamoxifen instead of an AI. I don’t think a pet scan will tell you. Glad I’m getting Lupron shots, those are in your butt!! It is still kind of a big needle though!

  • VVV
    VVV Member Posts: 50
    edited October 2018

    buttonsmachine, my oncologist said that they would do a baseline bone scan before starting the AI for me so you may have some time still. I think it's better to have one at the beginning so you can compare future ones and see how much has changed.

  • Jinx27
    Jinx27 Member Posts: 119
    edited July 2018

    Hello! Will be turning 30 on Saturday.

    Im two years in with hormonal therapy.

    Going through it right now, and I havent gotten a hold on my symptoms yet. Im at least 50 lbs overweight with fatigue and hot flashes like no other. Im on Anastrozole and monthly Lupron injections.

    I plan on making a huge effort with exercising, hopefully this will help.

    Make exercise a daily thing if you can! I had a month of doing really well with 45 min of cardio in the morning and my weight decreased my 9 lbs in two weeks. That along with diet catered to you being menopausal.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited August 2018

    So I'm about to get my second Zoladex injection, which means it's been almost 28 days since the first one. So far I definitely had estrogen withdrawal bleeding - like my period, but not. I haven't had an actual period for six months due to chemo. I didn't totally understand it but my MO said the bleeding is normal/fine in the beginning. I also had a massive headache on and off for a while - that also happened to me when I started tamoxifen - but that's lessened. No hot flashes yet, but I'm sure they're coming.

    I think the main effects have been emotional. I feel like someone threw water on my spark. I feel like it's a struggle to do anything. I can turn on the tears like turning on a faucet. I've been in active treatment for two years, and I have never felt quite this way emotionally. I don't quite feel like myself, and I'm more irritable.

    It could be the Zoladex, or it could just be coincidence that I fell into a funk when I started the Zoladex... but I think it's the Zoladex. I'm hoping it will normalize as I adjust. I haven't talked to my MO about it yet, because they'll probably just offer an antidepressant or something. I just don't really want to start that unless it's absolutely necessary. Did anyone else notice emotional side effects?

  • gkbuser
    gkbuser Member Posts: 300
    edited August 2018

    I would like to hear people's experiences while on zoladex. Did anyone have back pain on zoladex? I've been on Zoladex shots for about a year-and-a-half. I'm about ready to jump ship. Would like to hear from others. Thank you.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited August 2018

    How often are the treatments for ovarian suppression?

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited August 2018

    TomMorrow, I get an injection once a month. There is also an every three month version, but I have never tried that.

    gkbuser, hopefully more people will chime in soon. I've only been on Zoldadex a few months, but I do notice a little more back pain and general aches and pains. My understanding is that it's a common symptom, but it's definitely not fun. Have you talked with your MO about it?

  • jaboo
    jaboo Member Posts: 368
    edited August 2018

    I've had just two Zoladex injenctions so far, so I don't know yyet. Also, the first injection was on the day of my first chemo, so it's difficult to say what comes from Zoladex.

    I've had some mild hot flashes, but really mild, so I'm really not sure. I just get suddenly too warm, but no sweat, it passes in a few minutes. Eith the hot summer here, I really don't know.

    I've had some back pain for the last 3 weeks or so, but again - it could be from those filgrastm injenctions, they are worse than AC chemo for me.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited August 2018

    I think my wife will need to consider the procedures discussed above for ovarian suppression (monthly injection) or consider an oophorectomy. Has anyone had to compare these options and have a pro/con list, assuming having additional children is not a factor? I just started researching this part of the treatment plan in anticipation of our meeting with the medical oncologist early next month.

  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited August 2018

    Tom, I just had oophorectomy last week. Prior to that I was on monthly Lupron shot for 6 month (February - August).

    So far, I can't find downsides to having my ovaries out. Somehow my hot flashes are less frequent than they were on Lupron, not sure why. I'm 100% sure now that my ovaries are not working and AI will be effective, I don't have to go for shots monthly, and I don't put any additional chemicals (not including letrozole, of course) in my body.

    The only potential upside to having shots vs removing the ovary is the (small enough) chance that ovaries will wake up after 5 years of suppression and your wife may get some benefit from estrogen production (heart and bone health benefits). However, in my book, these are the things that can be controlled/helped with lifestyle (exercise), while having estrogen again would freak me out in regards to the chances of recurrence.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited August 2018

    TomMorrow, as FarAwayToo pointed out, there are heart and bone health benefits to having functional ovaries later on. Also, having functional ovaries lowers the risk of developing cognitive impairment and dementia. Ovarian function is also important to vaginal and sexual health.

    That being said, for certain high risk breast cancers, and for people who don't tolerate ovarian suppression well, an oophorectomy can be a good option. How old is your wife? One obvious key difference is that chemical ovarian suppression is reversible, while an oophorectomy is not.

    Your wife can always try ovarian suppression, and see how it goes. An oophorectomy can always be done later if desired. Your MO will hopefully be helpful in weighing this decision too.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited September 2018

    My wife is 49. Her primary MO recently tested her Estrogen, FSH and LH levels, which all came back in the menopausal range. However, we understand that these levels can fluctuate and one reading may not be determinative. She has very low PR, so both of her MO's (one at a national center that we use as a second opinion for her treatment plan) want to use an AI instead of Tamoxifen. We anticipate both MO's will provide a recommendation on monthly injection v. surgery, as well as the type of AI to use (and whether a base line bone density scan should be performed).

    buttonsmach: this will obviously show how uneducated I am on this particular issue, but is there benefit for having ovaries when in menopause? I guess my question is whether injections could provide more flexibility if my wife knew whether she would be off AI's before menopause or not. If she was going to be on AI's after starting menopause, is there still a benefit? Last we heard, the MO's said she would likely be on AI's for 7 years and would wait and see if the studies suggest 10 years or more is better.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited September 2018

    TomMorrow, forgive me if I'm over-explaining or misunderstanding you.

    Ovarian suppression and the AI's are two different (but closely related) things. OS is an injection, and the AI is a pill taken daily.

    If your wife is already in menopause, she may not need to do OS at all, or an oophorectomy for that matter, and could take an AI alone.

    Importantly though, being postmenopausal (whether naturally, surgically, or chemically) will NOT eliminate the need for AI's or tamoxifen, even though it might eliminate the need for OS.

    Many of the side effects of OS and AI's overlap because both are depriving the body of estrogen, but in different ways. Your MO will be able to discuss the benefits of your wife doing nothing with her ovaries, vs. shutting them down with OS, vs. an oophorectomy. This can often be a bigger problem for very young women, since it's so unnatural to enter menopause in your 20s or 30s.

    Your MO will likely monitor her estrogen levels to make sure she really is post-menopausal, because you're right that it can be a gray area.

    Also, tamoxifen is different from the AI's in the sense that it can be taken by pre or postmenopausal women, so your wife may have that as an option regardless. AI's are the "big guns" though, so your MO might prefer those over tamoxifen.

    I hope that helps and makes sense - it's nice that you're taking an active role in learning about your wife's treatment.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited September 2018

    Thank you for the explanation, which did answer my question. Unfortunately, because of her low PR, Tamoxifen isn't recommended by either MO and, thus, she needs to be in menopause in some way in order to take AIs.

  • gkbuser
    gkbuser Member Posts: 300
    edited September 2018

    Tom, I am on monthly shots of zoladex (to insure total menopause) and an AI. I was 51 years old at diagnosis and it was not clear if I was in menopause yet or not. I am 53 now. My oncologist and I are having talks about taking me off the shots as I am most likely in natural menopause and going to single-agent only which would be the AI. At the time, all the doctors agreed that oophorectomy would have been too drastic of a measure for me. And to answer your question, I asked the same question to my doctor's and yes ovaries do have some function for women that are already menopausal. Plus my gynecologist said there is a chance that they do things for our body that we don't even know about yet. She was very big on me keeping them if possible. Someday when we are all done with the anti hormonal meds then everything is reversible and we can receive whatever benefits our ovaries might have for us in our old age. I think the fact that your wife's blood tests indicate menopausal range is very encouraging. Good luck and do keep us informed.

  • WC3
    WC3 Member Posts: 658
    edited September 2018

    My mother and her cousin have severe osteoporosis so that has always been one of my "try not to get" things. If my cancer does not have androgen receptors then my plan is to take testosterone in place of my estrogen.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited September 2018

    Thank you for all of the information, it is really helpful (and appreciated).

  • gkbuser
    gkbuser Member Posts: 300
    edited September 2018

    Would anybody be willing to share the process they followed to trial off zoladex to see if their body was a natural menopause?

  • Knitpig
    Knitpig Member Posts: 6
    edited September 2018

    I started Zoladex last October, so I'm almost a year in. I'm about to be 35 in November.

    Some of my SE's are emotional (mood swings) but mostly physical. I have aches and joint stiffness, some weight gain, loss of libido, and hot flashes. I was taking anastrazole for about 3 months but I couldn't handle some of the side effects so I went back on Tamoxifen.

    I'm looking forward to being pre-menopausal again someday. I have to do this for 4 more years, then I get to have my hormones back. Not stoked about menopause twice but really excited that I get to stop eventually.

  • gkbuser
    gkbuser Member Posts: 300
    edited September 2018

    knitpig, that's the beauty of zoladex is that it is reversible when you stop taking it. The side effects can be tough though. Hang in there.

  • Walden1
    Walden1 Member Posts: 110
    edited October 2018

    .i am 44 and have been on OS and AI for about 2 months. In that time I've a gained at least 5 pounds maybe 10. What's more disturbing is the shape of my back and stomach has totally changed. I basically have no waist at all. I seem to be gaining weight or maybe bloating, in a way I never have before, and getting much wider in the middle than i would expect over 5 pounds. My appetite is low and I exercise more than ever. Does this stop after a few Months? Feeling pretty discourage

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited October 2018

    Hey Walden, I'm in the same boat! Medically speaking, my understanding is that weight gain around the stomach and love handles is common on these drugs, and is a common pattern post-menopausal pattern of weight gain in general. The lack of estrogen causes it, for some reason. :-(

    My whole adult life I was healthy at 130-135 pounds and in great shape. Now I'm hovering around 140, and I think it all went around my waist. I topped out around 145 during treatment, and felt very uncomfortable. I recently lost 4-5 pounds with great effort. My goal was to at least get back under 140, but I still have this very stubborn spare tire / muffin top / love handles. I agree with you that it looks like way more weight than 5 pounds should.

    When I look in the mirror the silhouette of my back has changed. My tummy is not as flat anymore either. It's very maddening. I know some people would say not to be vain, but it's upsetting to me to lose the body I recognized and felt comfortable in. As if losing my breast wasn't bad enough.

    Anyway, I'm going to try to be proactive, and start exercising more. I'm thinking of trying Pilates to build core strength. Even if I don't lose weight, at least I'll have more muscle. I definitely lost muscle mass during surgery/chemo anyway.