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Women on Ovarian Suppression + Hormonal Therapy Unite!

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Comments

  • Spoonie77
    Spoonie77 Member Posts: 532

    Ayr1016 - > Thanks for sharing that info, the tips, and the picture. I'll definitely be on the look out for a nurse to keep in the loop, as well hoping to keep the injection to a hip area rather than the stomach too. Very helpful. :)

    OTMom - > As to a Dexa Scan, no I've not had anything recent. I had to have one about 9 years ago due to a SeroNegative RA dx. These were my results: 2010 DEXA Bone Density: Skeleton Findings:"Looking at the results, your bone density was mildly diminishedby Z-scores with an average lumbar spine L1-4 Z-score of -1.2, which is close to normal. The bone density was normal by T-scores." I think I will message my MO and see what she suggests based on my previous one.

    Is it standard that they do one FIRST or in the first few months to monitor?

    As to the injection timing, it makes sense that they would start people on the 1 month injections rather than a 3 month one. Honestly that's what I'd prefer to stay on as I think I'd worry less about it working the entire time having it be monthly. With you having Osteo, did your MO put you on anything to help manage it or prevent it from getting worse?

    I'm glad to hear that the majority of you all seem to have handled the treatments fairly well. Gives me hope that perhaps this route may hold better things in store for me. fingers crossed.

  • OTMom
    OTMom Member Posts: 58

    Spoonie, I get zometa infusions for the osteoporosis and take a supplement to help (calcium, magnesium, D, etc). I think different doctors have different opinions on when to do the dexa. I was glad that we knew going into things- otherwise we would have thought that the drugs killed my bones shockingly quickly, when the reality is that they were already a mess. To me it makes sense to do one first so that you can compare.

    They did say that they could do the 3 month injection above my hip as well if the belly didn't work for me. For whatever reason she thought it was easier to start with the belly. Not doing that next time. The one month version was the standard IM injection in the rear.

  • ayr1016
    ayr1016 Member Posts: 156

    I forgot to update on how my 1st Zometa infusion went. It took about 30 minutes just for the Zometa bag to empty. I have been told the longer it takes, the better. I still had a full ish IV bag of saline left and nurse asked if I wanted to wait till it was gone. Say YES! That extra fluid is good. So, that took another 20 mins. I also drank a lot of water prior to, during, and after. I did this last Friday. I wanted to do it on a Friday to have the weekend to recover. I did feel body aches, low grade fever, and tiredness. I took advil around the clock for 2 days. I stayed in bed most of the weekend resting and binge watching TV. I think the key for me is and was hydration, rest. and advil.

  • rubyredslippers
    rubyredslippers Member Posts: 94

    do you have to take tamoxifen with ovarian suppression medication? I was told I couldn’t have ovarian suppression unless I also took the tamoxifen that I’d refused.

  • jaboo
    jaboo Member Posts: 368

    Well, I am to start a bisphosphonate for my osteoporosis soon. But mot untill I see my dentist and she gives her consent or does any neccessary teeth work. 🙄 I am dreading the phone call, let alone the appointment itself at the dentist's!


  • Cpeachymom
    Cpeachymom Member Posts: 249

    rubyred- OS does stop your ovaries from producing estrogen, but it is still produced by other parts of your body like fat cells and adrenal glands. Tamoxifen or AI is used to mop up the rest. I don’t think OS alone provides the protection you think.

  • Joyseeker43
    Joyseeker43 Member Posts: 15

    I wonder if my nurse hit a vein last time? I’ve never experience braiding like this and I’ve been on monthly Lupron since September 2018.

    image

  • ayr1016
    ayr1016 Member Posts: 156

    joyseeker43, OUCH. I am never surprised to see a little bruising on me because I easily bruise. It is when the injection site hurts for over 3 days + I know they hit something wrong. Hope yours didn't bring days of pain because it certainly looks painful.

  • g024272
    g024272 Member Posts: 2

    I have been on zoladex and anastrozole for a year now. Within the past month, I have started have problems with my hands - in particular, my pointer finger on my dominent hand. At first I thought I may have jammed it or something but now I'm wondering if this might be related to the anastrozole. Any folks with advice in terms of the tendinitis issues?

  • g024272
    g024272 Member Posts: 2

    One of my shots resulted in a big bruise as well. The nurse indicated that they must have hit a small artery. I guess it is a crap shoot.

  • mellee
    mellee Member Posts: 220

    I've been on Zoladex for over 3 months now and doing well all things considering. Pretty much the only major side effect that I noticed from adding that on top of tamoxifen was hot flashes (not fun, but livable) and some minor sleep disruption.

    But! I switched from tamoxifen to Aromasin about 10 days ago. And man am I feeling terrible! It could be a coincidence, but I'm thinking it's the med.

    My whole body aches (not joint pain, just general my body-feels-like-crap) and I am EXHAUSTED. I can barely drag myself through the day. My brain is foggy, which makes work tough. And I'm feeling really depressed and irritable. I have a long history of depression, so these symptoms are not unfamiliar to me, but I was feeling great until this week. I sailed through radiation with tons of energy and high spirits. So this crash is really discouraging.

    I'm going to see if increasing my antidepressant helps, but just wondering what you gals have experienced. Did you find that side effects eased over time? I'm really hoping this isn't the way I'm always going to feel on Aromasin. I don't think I can do this long term.

  • mellee
    mellee Member Posts: 220

    Forgot to mention: I actually have one other weird side effect that I only just figured out is from Zoladex. I've been going on long walks every day and without fail, about 15-20 minutes in, the bottoms of my feet start to go numb and tingly. If I stop and shake it off, the feeling comes back. It's very similar to how it feels when your feet go to sleep.

    I looked up Zoladex, and sure enough paresthesia is listed as a "common" (1% to 10%) side effect! Not sure if it's something to be concerned about. Planning on bringing it up with my MO.

  • elainetherese
    elainetherese Member Posts: 1,635

    Hi!

    I'm on Zoladex + Aromasin. Aromasin did mess with my moods, which is why I'm on Celexa. Yep, many women feel achey on Aromasin. Does life on Aromasin get better?

    Well, I used to have tons of hot flashes on Zoladex + Aromasin, but they have diminished over time.

    If I sit at my desk for too long, I will feel creaky when I get up. I try to get up, every 40 minutes to avoid that feeling.

    I don't know if my mental state has improved because I'm still on Celexa.

    Mellee, yes, I would up the antidepressants if I were you. When are you taking Aromasin? I take mine in the morning because I was worried about insomnia. However, if Aromasin makes you feel tired, you might be better off taking it at night.

  • Spoonie77
    Spoonie77 Member Posts: 532

    G024272 - > From my reading on this site I've seen alot of women talk about Trigger Finger and Carpal Tunnel as SEs from various AI's. I'm not sure about the meds you are specifically on but I do know that seems to be a common complaint. I did a search on google and this was the first thing that popped up, from 2015. Seems like you are not alone. Are you following any of the AI specific threads? You might find more info and ways to cope with it there as well.

    "Hyperestrogenism is an important risk factor for the development and progression of endometrial cancer.Aromatase inhibitors (AIs) block the aromatase enzyme, which converts peripheral testosterone and androgens to estrogens, subsequently lowering estrogen-modulated stimulation. Hence, AIs are useful in the management of endometrial cancer. However, musculoskeletal complaints, particularly arthralgia and myalgia, in patients treated with AIs have been reported. It has been suggested that AIs reduce the antinociceptive effects of estrogen by complete estrogen depletion, and therefore, decrease the pain-threshold, resulting in arthralgia. Also, it has been reported that AIs are associated with carpal tunnel syndrome (CTS) and trigger finger. CTS has been reported to be associated with all AIs, anastrozole, exemestane, and letrozole.,, Arthralgia, trigger finger, and CTS were frequently reported for patients treated with letrozole or exemestane, and most patients showed a severely reduced mobility of the hand or wrist."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4479852/


    There is a "Doing Well on AI's Thread" and "For Arimidex (Anastrozole) Users, New, Past, and Present" threads if you have not seen them yet.

  • Spoonie77
    Spoonie77 Member Posts: 532

    Mellee -> I'm sorry you're feeling so awful since the switch. :( I hope someone will be able to give you some pointers or help on those SEs improving with time. As to your walking/numb feet feeling, I read that and was like, "YEP! That IS a beotch.". I know exactly of which you speak. You are not alone! I had that terribly while I was on Tamoxifen. I'm not sure if it's the same with Zoladex, but I do know that that was one of my SEs of Tamox that actually diminished within the first 2 months, instead of getting worse. Fingers crossed that fades for you too. When do you see your MO next?

  • Spoonie77
    Spoonie77 Member Posts: 532

    So next week things finally start to roll into place for me. My MO approved a DEXA scan for me since I had diminished scores for my age 10 years ago. I'm relieved we'll have a baseline to start with. Scan is Tuesday. Then the first week of July I'll see her for my first Lupron injection. Hoping scan is clear of any issues and things will be a go.

    I'm wondering, while waiting for the Lupron to shutdown everything, did your MOs have you Tamoxifen or anything else in the meantime?

    I can't be on Tamoxifen, so I'm a bit worried about going until September without anything for systematic treatment. Although, I guess, I had two months of 5 mgs a day built up, so hopefully that will give me a bit of protection through the summer.


  • mellee
    mellee Member Posts: 220

    Elaine - that's encouraging that your hot flashes have gotten better. I've seen some people saying to give it 3 months to see if certain side effects subside.

    I also found a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3397233/) that looked at quality of life on tamoxifen vs aromatase inhibitors and they found that most side effects do tend to improve over time, and fatigue improves significantly. So that gives me some hope!

    I'm already taking the Aromasin at night, but that's definitely good advice. I tend to get sleepy on a lot of meds, so that's always my strategy.

    Spoonie, I'm not seeing my MO for a couple of months, but I think I'm going to email her about the numbness. As to your question, I stayed on tamoxifen for three months after starting hormone suppression. They wanted to be sure I was reliably post-menopausal before switching me to an AI, since I was still getting benefit from tamoxifen. But if you can't take tamoxifen anyways, I don't see why they couldn't switch you right away. It can't hurt, at least from what I understand. For me, the shot worked quickly. My estrogen levels dropped to post-menopausal range within the first month.

  • buttonsmachine
    buttonsmachine Member Posts: 339

    mellee, I've had many of the same experiences. For me the side effects have improved with time, but it's still not easy.

    I was on Zoladex for 6 or 7 months before starting Aromasin. I had hot flashes and mild joint pain, but my side effects otherwise were not terrible. When I added the Aromasin, I started to feel worse within a week. I had more joint pain, hot flashes, mild acne (surprise!), and worst, was a pretty significant emotional crash. I was depressed, moody, and angry more often than not. That is not typical for me.

    My MO offered me antidepressants, but I wanted to wait it out for a bit. The depression started to lift around the time I finished my fourth bottle of Aromasin. I feel better now, but still not totally like myself. It's a work in progress. One day at a time.

  • mellee
    mellee Member Posts: 220

    Thanks for sharing, buttonsmachine. The emotional crash is intense! And it was so abrupt. I'm so glad to hear that you're slowly but surely feeling better. It sounds like that often happens, so I'm going to give it time.

  • Spoonie77
    Spoonie77 Member Posts: 532

    HI ladies - Can any of you offer TMH thoughts on the switch? She's going to be switching and she posted here earlier, but somehow we all missed her question. Doh. Whoops. So sorry TMH. Hope some of you fantastic ladies can offer her few suggestions and/or share what's happened with your switch.


    Jun 9, 2019 08:11PM Tmh0921 wrote:

    I've been on Tamoxifen for almost 3 years now, but was just diagnosed with a new highly ER+/PR+ IDC. After my upcoming BMX and reconstruction, my MO is switching me to ovarian suppression + AI. Have any of you switched from Tamoxifen to OS + AI and if so, how different are the side effects?

    I already have a lot of side effects on Tamoxifen including night sweats, joint and muscle aches, digestive issues, etc.

  • mellee
    mellee Member Posts: 220

    Sorry Tmh! Don't know how I missed your question. I switched from tamoxifen to OS + AI after 2.5 years, so very similar situation. Everyone reacts differently to medication, so it's impossible to predict what you'll experience. Hopefully the switch won't be too difficult for you!

    The ovarian suppression itself wasn't too bad for me. I started having uncomfortable hot flashes maybe 3-5 times a day. It also affected the quality of my sleep. I started waking up really early, when I've never been a morning person. I think that's typical menopause stuff.

    The switch from tamoxifen to exemestane (Aromasin) has been a lot harder, at least so far (I'm less than 2 weeks in). I did have side effects on tamoxifen. Mainly night sweats, mild joint pain, hair thinning, and weight gain. But I tolerated it pretty well, and my night sweats and joint pain almost totally disappeared over time.

    Switching to Aromasin, I noticed a huge crash in mood. I'm really irritable and tired and my body aches. My sleep has gotten worse too. From what I've read, insomnia and fatigue tend to be worse on Aromasin than tamoxifen. I'm hoping these side effects improve as my body adjusts.

  • Fritzmylove
    Fritzmylove Member Posts: 262

    I am SO relieved to hear that carpal tunnel and numbness is a normal side effect of AIs!! Over the past month or so, my hands would fall asleep when I sleep in the fetal position. It immediately goes away when I shake them, but I was freaking out about what it could be, so reading that temporary numbness in hands and feet can be normal on these drugs. So thankful for this thread

  • tmh0921
    tmh0921 Member Posts: 519

    Thanks Spoonie and Mellee

    I take Celexa and Klonopin for Anxiety so hopefully that will help with the mood swings. I have insomnia with Tamoxifen, but the Klonopin I take for anxiety helps that. My side effects with Tamoxifen have increased over time, so I hope any side effects with an AI decrease over time for all of our sakes.

    I hope I have more success with the mastectomy and OS + AI than with Tamoxifen.


    It’s nice to “meet” y’all

    Tracy

  • Fightingirl
    Fightingirl Member Posts: 328

    Hi Ladies! I've been receiving Zoladex since December of last year. I was getting it every month and last Friday my MO switched me to the 3 month dose. Does anyone else still get pangs in one ovary? I feel like it would be close to that time of the month and then it goes away for weeks. Like my ovaries are still trying to work. I also take Letrozole. I have to say that I haven't had any great side effects yet from these medicines. I have not experienced hot flashes or moodiness...I would think I'd have had that by now since I've had 7 injections? I don't know...I do have weight gain though! That part is tough because I am not able to do anything more than walk or swim which I try to do as often as I can. Now that it's summer here in Arizona, walking is out! I have a fractured vertebrae and mets everywhere from neck to knese so swimming is my best option for the time being. I also stiffness in my legs and that is hard to know if it's from medicine or rads to my femurs...maybe a combo?

    Mellee, I was glad to read your post about what your doc said about oopherectomy. I thought I wanted that because then I could skip these damn injections but truly, I guess I am still getting benefit from having them!

    Happy Saturday!

  • elainetherese
    elainetherese Member Posts: 1,635

    Fightingirl,

    I gained weight, too! I am also trying to swim alot this summer, and it finally got hot enough this week (we'd been having a lot of rain, which kept things cool). I'm sure the Femara isn't doing anything to help with the stiffness..... I know that when I started swimming this year, my right arm (radiated armpit) wasn't too cooperative at first. But, it's better now.

  • mellee
    mellee Member Posts: 220

    Fightingirl, I haven't noticed ovary pangs, but I definitely noticed PMS-type symptoms around the time I'd usually get them, even though my periods have stopped. So I wouldn't be surprised!

    I sympathize with the weight gain, although mine happened before OS while I was on tamoxifen. I'm trying to lose it now, so we'll see how it goes. I think it's going to be an uphill battle.

  • ayr1016
    ayr1016 Member Posts: 156

    I actually lost a little weight with tamoxifen. I had terrible side effects though. My joints and muscles hurt so bad all of the time and I was constantly nauseous. I walked so slow. With AI I have menopause side effects (insomnia, weight gain, moody), but nothing so debilitating as being on Tamoxifen. I gained the weight back and then some with AI. I am not the same energy person I used to be. I wish I had a pool. It would be great for exercise and my lymphedema.

  • ayr1016
    ayr1016 Member Posts: 156

    Let's talk about dryness. Something I wish I would have known prior to being thrown into menopause so quickly is the dryness. I've always had normal skin. My skin feels like the moisture has been sucked out of it. Especially my face. The dryness on your vaginal area as well. THIS was a shocker. The dryness in the vaginal area is painful. My dr. Prescribes a cream to help. Anybody else have tips on how to combat the dryness? I have to remind myself that most women have years to get to full menopause and that I had 3 months. My body is going to be and act different from the normal transition. Sometimes I just want to submerge myself in a huge vat of moisturizing lotion 😉

  • Fightingirl
    Fightingirl Member Posts: 328

    ayr1016, YES!! I haven't noticed the vaginal area but my skin is much drier and never had that issue before. Even my scalp...I was the girl that had to wash my hair everyday and now I'm on day 3. I would say that I actually like the hair side effect because I'm generally too tired to go through a whole hair routine everyday now anyways. But I agree, I'd love to sit in a huge vat of moisturizer!

  • mellee
    mellee Member Posts: 220

    I don't have the vaginal dryness yet, but I've had to change my whole skincare regimen. I'm a skincare nerd (okay, a nerd in general 🤓), so I've done a lot of research on what can help with dryness and other hormonal changes.

    I've actually gone a bit over the top with skincare lately. I think it's because I can't control what happens with my cancer and I'm feeling like crap about the weight gain but at least I can make sure my skin looks great! I won't bore you with my whole routine (unless asked and then I am happy to geek out on skincare layering with you lol), but for estrogen-challenged, aging skin, what you want are products with hyaluronic acid, peptides, ceramides, essential fatty acids, and antioxidants. My dermatologist also suggested using Retin-A or something with retinol to encourage skin cell turnover.

    Here are some of my favorite products (all fragrance-free and suitable for sensitive skin):

    CeraVe Hydrating Face Wash - with hyaluronic acid and ceramides. It's a great cleanser that doesn't leave my skin feeling tight and dry. https://www.amazon.com/CeraVe-Hydrating-Facial-Cleanser-Washing/dp/B01MSSDEPK/ref=sr_1_2?crid=2AU2615E5YZ4B&keywords=cerave%2Bhydrating%2Bcleanser&qid=1561322760&s=gateway&sprefix=cerave%2Bhydrating%2B%2Caps%2C197&sr=8-2&th=1

    Paula's Choice Enriched Calming Toner - So soothing. Has lots of skin soothing and hydrating ingredients. I use it after cleansing. https://www.paulaschoice.com/skin-recovery-enriched-calming-toner/125.html

    The Ordinary "Buffet" - Amazing (cheap!) peptide serum. I add a few drops under my moisturizer. It makes a huge difference in how my skin looks and feels. https://www.sephora.com/product/the-ordinary-deciem-buffet-P427420?om_mmc=ppc-GG_1380515476_53324488525_aud-310433652170:dsa-414040944380__267305447656_9030953_c&country_switch=us&lang=en&gclid=CjwKCAjwxrzoBRBBEiwAbtX1nwmwxqfnESmZOAi0RUiYqLpLxCEDWpPwU2GAcWObdsYqSPKavPw72hoCXcoQAvD_BwE&gclsrc=aw.ds

    Maelove Glow Maker serum - with Vitamins C, E, Ferulic Acid and Hyaluronic Acid. It's less than $30 and pretty much a dupe for Skinceuticals $180 C E Ferulic serum. https://maelove.com/collections/our-lineup/products/the-glow-maker

    Paula's Choice Omega+ Complex Moisturizer - very similar to Drunk Elephant's much more pricey Lala Retro whipped cream. Packed with ceramides, omega fatty acids, and antioxidants. It's really rich so I just use a pea-sized amount. https://www.paulaschoice.com/s/paulaschoice_us/omegaand-complex-moisturizer/339.html?expadvice=ctatest

    ACURE The Essentials Marula Oil - Marula oil is high in antioxidants, essential fatty acids, and amino acids. Oil sounds scary (especially to someone like me who used to struggle with acne) but it's really light, non-greasy, and doesn't cause breakouts. It's great for the eye area and other dry patches. It's also nice for the body. https://www.amazon.com/ACURE-Essentials-Marula-Packaging-Vary/dp/B00BG238AU/ref=sr_1_3?keywords=acure%2Bmarula%2Boil&qid=1561340633&s=beauty&sr=1-3&th=1

    CeraVe Moisturizing Cream - rich body cream with ceramides, hyaluronic acid, and cholesterol (which in skincare is good). https://www.amazon.com/dp/B00TTD9BRC/ref=emc_b_5_t?th=1

    Hada Labo Tokyo Ultimate Anti-aging Facial Mask - hydrating, hyaluronic acid face mask that I use once a week or when my skin is feeling extra parched. https://www.amazon.com/gp/product/B00OFTIQ8U/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

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