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Women on Ovarian Suppression + Hormonal Therapy Unite!

mellee
mellee Member Posts: 220

Hi all! I'm starting this thread for those of us premenopausal women who are receiving ovarian suppression treatment (Lupron, Zoladex, oopherectomy, etc.) plus hormonal therapy (tamoxifen, exemestane, or another AI). For me, there's a lot of fear and worry over how this will impact my overall well-being... how it will age me... what it will feel like to slam into chemical menopause... the list goes on and on.

I'm hoping this can be a place where we share our experiences and encourage each other.

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Comments

  • Fritzmylove
    Fritzmylove Member Posts: 262

    Perfect timing! I had my first Zoladex this morning, and will take my first Femara pill tonight. Eventually I’ll have my ovaries removed, but I need to recover from BMX and rads first.

    Chemo put me into “chemopause” so I haven’t had a period since November, andI’ve also been having mild hot flashes.

  • elainetherese
    elainetherese Member Posts: 1,624

    Hi!

    I've been on Zoladex + Aromasin for four years. At the beginning, I had some hot flashes and some moodiness. To deal with the moodiness, MO prescribed me Celexa, which did the trick. Did you ladies get a dexa scan before beginning? My initial dexa scan showed that I was borderline osteopenic. After two years of Z+A, I had full-blown osteoporosis and was considered to be at high risk for a fracture. MO first put me on a biophosphonate, Fosamax, but then she prescribed Prolia. I should be having another dexa scan soon, to see whether the Prolia is working. This Spring, I will go on a Zoladex vacation to see whether or not I'm menopausal. If so, it's bye-bye Zoladex!

  • Fritzmylove
    Fritzmylove Member Posts: 262

    I have my baseline dexa tomorrow. I’m only 35 so I can’t imagine I should have any issues, but I also never imagined I’d have BC, so...

  • mellee
    mellee Member Posts: 220

    I'm scheduled for a baseline dexa scan next week. Then getting my first shot on the 13th!

    I had consults with two MOs, and the first said she would automatically put me on medication from the beginning to protect my bones, while the 2nd said only if I start having problems. She also said that a lot of the bone density loss from ovarian suppression reverses once you stop, so that could be good news for you, Elaine!

    I'm already on Lexapro, so hopefully that will help me with any moodiness. Wondering if I may need to up my dose? My MO warned that depression is common, and it's already something I struggle with.

  • NCGirl1
    NCGirl1 Member Posts: 18

    I agree this could not come at a better time. I am set to receive my first Lupron shot tomorrow. Very apprehensive about this. Already on Tamoxifen and do experience some side effects. Wondering what Lupron will add!


  • OTMom
    OTMom Member Posts: 58

    Thanks for starting this thread! I got my first Lupron shot this morning. I'm supposed to start arimidex today too, but I want to see how my body reacts to one thing at a time, especially since I'm still struggling with energy level post radiation. I'm simultaneously hopeful that this will help with some chronic pain caused by endometriosis and terrified of the ways sudden menopause might change my body. My baseline dexa showed osteoporosis in the spine (just over the line, so not extreme, but still not good) and osteopenia in my hip, so I'm taking supplements (which my stomach hates) and I'll be getting zometa infusions every 6 months. Also terrified of those. Ugh. I'm already on an antidepressant, so worried about how the mood stuff will play out. Trying to make it to more yoga classes because that tends to be good for me in many ways. Glad to have this thread for support.

  • mellee
    mellee Member Posts: 220

    Good luck tomorrow, NCGirl! Let us know how it goes.

    OTMom, I didn't even think about endometriosis. I hope you get a benefit there. We deserve something for all the other stuff we're going through. For my part, I'm very excited about the prospect of no more periods. It's a small perk, but I'll take it.

  • applejuice
    applejuice Member Posts: 49

    Good timing mellee! I will be reading\posting here as well!

    Tomorrow I have an appointment with my OB\GYN to find out from his experience what are the immediate and late effects of ovarian suppression and what he sees fit for my case, as I have been seeing him for over 15 years and trust that he will give an honest opinion about what I can expect on each situation: Tamoxifen only, ovarian suppression with meds + AI or oopherectomy.
    I feel that my MO pushed more the suppression of ovarian function with Tamoxifen or with another AI versus the Tamoxifen alone, and repeatedly advised to review the SOFT/TEXT trials. She is saying that women in their 30 and 40s have a longer life span and are at higher risk to relapse or to develop a new cancer hence the recommendation to go with the option that gives the highest disease-free survival rate. Most studies are looking at max 15 years post treatment and in premenopause women, should look into a much longer disease free period.

    After I recovered from the BMX I pretty much feel that my life is getting back to normal and I am dreading to start the hormonal treatment with its side effects!

  • mellee
    mellee Member Posts: 220

    Hi applejuice! I'd love to hear what your Ob/Gyn thinks.

    I've been reading up on the SOFT and TEXT trials, but there still seems to be a big debate about what exactly everything means. I had thought it was pretty clear cut that ovarian suppression + exemestane reduced risk the most, and I think that is still true, but after reading this, it appears there are some big caveats: http://www.ascopost.com/issues/july-25-2018/8-year...

  • Yuuki
    Yuuki Member Posts: 17

    Hi Mellee,

    I am in my third year of Lupron + AI. I had a local recurrence at 50, but still pre-menopausal. I started the Lupron three months before AI therapy.

    The hot flashes were present but not severe, which is consistent with my mom’s experience of menopause, and they began with the Lupron. Mood swings...you’d have to ask DH. Certainly I never felt like I couldn’t control my emotions. What I did notice was a bit of achiness at the base of my thumbs; this was aggravated by the addition of the AI and I did later develop significant multi-joint pain from the combination. I’m very active and still trying to find a workaround for that. On bone density, so far so good.

    My silver lining has been the complete disappearance of my perimenopausal migraines, which is no small thing. I haven’t seen much research comparing the toxicities of tamoxifen to Lupron + AI, and I am curious if there is anything out there. Having said that, I do accept that there are trade offs with these medications.

  • mellee
    mellee Member Posts: 220

    Yuuki, so glad to hear your hot flashes and mood issues weren't too severe! And the migraine relief is huge. Any silver lining!

    Does anyone know what the difference is between Lupron and Zoladex? Are they essentially the same or is one preferred over the other in certain situations?

  • elainetherese
    elainetherese Member Posts: 1,624

    They are considered to be the same class of drugs. But, Zoladex is every month; Lupron is every three months. So, Lupron is more convenient. They also have other usages outside of ovulation suppression. For example, my nephew took Lupron because he was diagnosed with precocious puberty. Lupron may also be cheaper, as it is available in generic form whereas Zoladex is not.

    I'm getting Zoladex because my (original) oncologist thought that insurance would be more willing to pay for the same drugs used in the SOFT study.

  • mellee
    mellee Member Posts: 220

    Thanks for the info, Elaine. I think I'm going to be getting Lupron, which seems easier since I can just do it as part of my 3-month oncology check-ups.

  • OTMom
    OTMom Member Posts: 58

    I think, like everything else, MOs have specific things that they prefer. Mine does Lupron, but I'm not sure why. I know for the arimidex she felt like insurance was most likely to cover that specific AI, but she didn't go into detail about lupron vs zoladex. She starts with monthly shots and usually after the third can switch to every 3.

    As far as the trials go, my MO felt like they indicated that suppression had the greatest impact on higher risk/more aggressive cancers. She was never opposed to OS in my case, but would not have gone there first (despite my age) if I hadn't had other reasons that suppression was likely to work better than tamoxifen.

    Today I was tired (so many reasons for that), had some minor spotting, and was super thirsty all day. Hard to tell if any of that is due to the lupron or just the usual ups and downs of my body. I didn't get the nasty headache some people mention though, so I'm considering that a win. I get migraines, so I generally expect headaches whenever they're a possibility.

  • Yuuki
    Yuuki Member Posts: 17

    OTMom,

    I did get headaches with Lupron early on. They felt like a headache I might get from dehydration, so I started making sure I drank as much water as I could. After a month or so of heavy hydration, the headaches went away and I haven’t had them since. I can’t swear to the connection, but it seems to have made a difference. Hoping the change in hormone levels wipes out your migraines, too.


  • palesa2018
    palesa2018 Member Posts: 58

    Hi all! I've been on Zoladex for 6 months (there is an option to get the shot at 3 month intervals not just monthly). Also been on Tamoxifen for 4 months. So far so good. I have only experienced hot flushes at night. Other than that feeling my healthiest oddly. Might be the additional supplements I'm taking...

    All the best!

  • mellee
    mellee Member Posts: 220

    That's amazing, Palesa. Please share your supplement secrets!

  • palesa2018
    palesa2018 Member Posts: 58

    Smile it's the usual supplements: Vit D3 50,000UI weekly, Daily Omega 3, Magnesium, Calcium D Glucorate, Curcumin. I also walk/jog for 45min daily and eat far healthier than I used to. I have managed to lose 22 pounds since starting Zoladex and Tamoxifen. Needed to prove to myself that I won't lose control of my weight due to the meds. I guess while it is not a cure I can at least feel good about myself.

    All the best.

  • mellee
    mellee Member Posts: 220

    Congrats on the weight loss! That is impressive and super encouraging.

  • Louisa_J
    Louisa_J Member Posts: 2

    Hi there! I seem to have found the right forum I think... is anyone here on Zoladex injections and Aromasin? I see Elaine is and it's good to know you have not had major side effects from it although osteoporosis is not good :| I have a déxa scan next week, first one was 6 months ago which showed some osteopenia in my femur. I just started the Aromasin a week ago and Zoladex in August 2018 and also taking numerous supplements plus greens and like Palesa take calcium d glucerate, regular calcium/K (low dose) magnesium and vitamin d, also take glutathione to detox the liver as I had 5 rounds of chemotherapy E/C ...haven't started Curcumin yet as oncologist said not to while i was on chemo... although its in the fridge! I do feel much better since taking these supplements and must now get into more exercise at the gym as only been walking since surgery. That's a lot of weight loss 22 pounds Palesa! Great to hear youre staying fit . Thanks for starting this tread m

  • moderators
    moderators Posts: 7,639

    Welcome, Louisa_J! We're glad you've found our community, and hope you find this to be a place of support. That's great that you're feeling better since starting the supplements! Hopefully once you're able to exercise more, you start feeling even better.

    The Mods

  • Louisa_J
    Louisa_J Member Posts: 2

    Thank you for the welcome mods! it's a challenge finding support locally so this online community is fantastic. have read many articles on the breast cancer. .Org site and numerous comments in this community etc.. which is most helpful. How do I add my diagnosis in?

  • mellee
    mellee Member Posts: 220

    Hi Louisa! I'm going to be taking Aromasin, but my MO doesn't want me to start until we see how my body is responding to the ovarian suppression. Not sure if I'm going to be doing Zoladex or Lupron. I think Lupron.

    I had my first dexa scan today. It was so quick and easy! I was expecting it to be much more of a long ordeal, like an MRI or something. That was a nice surprise.

    Louisa, you can add your diagnosis info here (there's also a tab in this area to add your treatments): https://community.breastcancer.org/my-profile/diag...

    Once you've added your info, go to your account settings to make it public if you want. That's where you can add signature info too: https://community.breastcancer.org/settings

  • garnersuz77
    garnersuz77 Member Posts: 36

    Hi ladies!

    I'm on month 2 of Zoladex and Arimidex. So far, so good except almost every time I stand up I feel dizzy. It's same the feeling you get when you step off a boat back onto land. Anybody else?!

  • mellee
    mellee Member Posts: 220

    That sounds like it might be a blood pressure issue. Abnormally low blood pressure is listed as an infrequent side effect of Zoladex, so you might want to ask your doctor about it.

  • applejuice
    applejuice Member Posts: 49

    My visit with Ob\Gyn got postponed and today I finally got to chat with him. He thinks Tamoxifen should be the way to go in my case and he is more concerned of how the body reacts when the estrogen production is stopped abruptly. He is saying that unless I have significant ovarian cancer history in family, BRCA mutations, or other very strong reason, I should not consider oopherectomy. He also advised to wait with ovarian suppression and to test and see where my Estrogen level in fact is, as it might be declining anyway and if that's the case i should start with Tamoxifen and switch to AI as soon as I am getting to menopause. He said that most of his patients are tolerating Tamoxifen pretty well and in general he has seen less issues than one would expect. He only had one patient with endometrial cancer due to Tamoxifen, in many years. Uterine polyps is more common and not difficult to address.

    He recommended bone density check before beginning any of the treatments as it is not very uncommon to have low density before menopause. I will have mine done on Monday.

    On another topic he mentioned that it is astonishing how in the last couple of months he had 6 newly diagnosed breast cancer patients, which is a much higher incidence than in the years before Scared. I will be back to the MO next week, to decide the final plan to follow.

  • HealthIsWealth
    HealthIsWealth Member Posts: 1

    thanks so much for starting this thread. I've been on tamoxifen alone for abouta year and a half and have only very recently started with zoladex injections (on my first month). I have always hated the thought of taking medication and the effects it can have, although I know how lucky I am to have this option to prevent recurrence! I'm interested to hear how others are doing and their experiences.

    Happy international women's day to every woman here <3 <

  • mellee
    mellee Member Posts: 220

    That's great news, applejuice! I tolerated tamoxifen very well, so hopefully you will too.

    I think oopherectomy can be a good option for some younger women, especially if you have a risk for ovarian cancer, but my MO generally recommends against it. The ovaries have a lot of protective health effects, so the goal in my case is to be on ovarian suppression for 5-10 years, then hopefully benefit from still having my ovaries for at least a few years before I go into menopause.

    Also, the shots are reversible. If you can't tolerate ovarian suppression, then you can stop. Oopherectomy is permanent. So that's another reason the injections are usually preferred.

  • OTMom
    OTMom Member Posts: 58

    For those of you who have been on this longer, how soon did you start seeing side effects? I had the shot a week ago and haven't started arimidex yet. My MO told me to start it at the same time as the shot, but I wanted to give my body some time to adjust and see what lupron alone did. So far I've been tired, some headaches, and some temperature weirdness but not actual hot flashes. I'm assuming there's much more to come. Also, from what I've seen here it looks like I should expect to have one more period, right?

  • Yuuki
    Yuuki Member Posts: 17

    Hi OTMom,

    My MO told me to expect one more period, and it showed up - a month late, but it did show up. Mild hot flashes and headache (this went away with hydration) started right away with the Lupron. Mild achiness at the base of my thumbs started about a month later. When I started Arimidex three months later, nothing got worse at first. The more serious joint pain crept up around combo month 4-6 and leveled off at around 12 months. After two years on the combo, the joint pain was severe but not getting progressively worse. The hot flashes all but disappeared after 6 months. I had been having perimenopausal migraines before the Lupron, but they disappeared within a month.

    I stopped the Arimidex for surgery recently and the joint pain went away. There has been a hint of stiffness since I restarted it, but I am hopeful itwon’t kick in fully before I am able to stop the Lupron and see how I do on Arimidex alone. Since restarting the Arimidex I have had a few mild hot flashes, but nothing severe.

    Everyone’s body is different, and I hope you sail through these medications. Many women do. Best of luck to you!

    Yuuki