Women on Ovarian Suppression + Hormonal Therapy Unite!
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Hi I was wondering if anyone could help check these numbers, I am trying to figure out if Zoladex is working (have been on it about 4 months now, Exemestane for 1 month- but by week 3 after injection, I feel quite pre-menstrual/spotting/mood changes). The bloods were taken 28 days after last Zoladex immediately before getting my next injection so when it was lowest in my system. I am outside of the US and this is the only test offered to check, no ‘super sensitive’ test that I know of. I will review with MO later in the week.
Serum Oestradiol: <90 (post menopausal range up to 118)
Serum LH: <0.2 (post menopausal range 16-75)
Serum FSH: 3.2 (post menopausal range 21-140)
From last two numbers seems no but first one maybe yes? Would appreciate if anyone had experience of this and could share your thoughts. Also is it normal LH is so low?
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Hello,
Lupron injections give me similar numbers. This is how injections work - they do not make you truly menopausal, they cause an ovarian failure. So numbers are low from the very beginning, but I don't know how they would look after the 5 years of treatment.
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Hi guys, I've been having blurry vision of one of my eyes for 4-5 days, I got it checked today and found out it's macular edema, fluid built up in the eye and caused impaired central vision. I have been on Aromasin for exactly 4 years and I think it's time to switch to Letrozole or Anastrozole. Any of you guys developed eye issues when on AIs? Thank you for sharing your experience!
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Hello,
I am on Arimidex, my opthalmologist also mentioned something similar with my eyes (borderline condition). What treatment did your doctor recommend?
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Today I got my 17th Lupron injection (monthly shots). Previous 15 injections were done by the same nurse at my old hospital and were almost painless. But two last injections are very painful. They were done by two different nurses at the new hospital. I could feel how a needle went deeper and deeper into the muscle. And injection site now hurts for 1-2 days. Before I had no issues at all.
Could you please share your experience with Lupron? How painful is your injection? Does your nurse make it intramuscular or subconscious?
I am very very upset.
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MikaMika,
I have experienced some extremely painful Lupron injections. It definitely, in my case, depends on how the nurse administers it. I don't get Lupron injections anymore because of some changes that have nothing to do with me. Now I get Zolodex in the tummy. I used to use a heating pad to help with the pain after the Lupron injections.
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Hi everyone! I’ve been on lupron since March 2016 and started exemestane in March of 2017 after radiation. My hot flashes and low libido are by far the worst side effects. My oncologists recommended ovary removal and said it is more effective in suppressing hormones than the lupron shot. I’m concerned with making any changes to my current treatment plan and wanted to know if anyone had literature on which is more effective? I’d also like to hear about your experience and appreciate all feedback! Thank you!!!
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I think any oncologist can easily order additional blood tests to check your hormone levels. You and your doctor can verify how well your treatment works. I am not a medical professional, but as I know fatty tissue also produces a lot of estrogen.
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ayr1016,
Thank you so much for sharing your experience. It appeared that I got a muscle spasm from the injection that still causes nerve irritation. I hope no one else gets the same issue.
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I too struggled when moving from lupron to Zolodex. There was a shortage during the pandemic. Lupron depot was made only by a Japanese company and production has been down. My oncologist was saving for me. The one month lupron was easier to get. If you are tolerating lupron, you should get lupron. If no 3 month, perhaps you’d be able to weather the storm with 1 month till the 3 month injections come out. I’m sorry this was happening for you. All of the treatment is hard enough to tolerate without needing to change and try something new.
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It appeared that many oncologists are not willing to prescribe 3-month Lupron injection. On the other hand, they are OK with 3-month Zolodex. To be honest, I don't understand their logic at all.
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MikaMika,
Thanks for letting me know. I am on 3 months lupron injection, I don't know it is on low stock now. But it seems my oncologist will order hormone test in a few months when I turn at 55 yrs, to decide if I still need lupron.
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where can I find out more information on ovarian suppression and bone health
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do the FSH and Estradiol tests tell if you are menopausal? I'm in kinda same situation. Scared to death of osteoporosis. Do all people end up with this?
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Hi Everyone
I have been on lupron and an AI for about a year. I am doing really well.
I am 44 and asked my MO and OB about ovary removal and neither recommended it for me. They both said that it ends up posing other health risks (primarily heart issues) that are not worth it when ovary suppression with lupron is working so well. I am curious about so many getting their ovaries removed. Is this not a concern by you or your doctors? Educate me!
As someone else mentioned, a few days before my next injection, I feel total PMS (moody, mad, etc). Interesting! Not sure why this is happening. Thoughts?
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Oh and my FSH levels show premenopausal but my estradoil show full menopause. MO and OB said this is normal. Is this the case for all of you?
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I am on Lupron and letrozole and I am eight months in and I am having eye issues also. Blurry vision and have to keep clearing my eyes and a little water refilling even though they're not watering. Doctor said other meds do the same thing so stay on it
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Hey everyone,
To get ovaries out or not, that is the question! I am now 56 and in my fourth year out from diagnosis. I was not in menopause when I was diagnosed. I have zoladex injections monthly and take anastrozole. Last July my MO had me stop the zoladex to see if I was now in menopause. In September I had my physical and had labs done for hormone levels. I sent those to my MO who then had me restart the zoladex because I was not in menopause. They have been checking my estradiol now which has been less than 11.8 for months and just did my FSH which was 7.3. I assume that the estradiol level is low now due to zoladex but the FSH level says I am not in menopause? I am 56 for goodness sake and don't want to keep having these injections if menopause is not in the near future for me. As much as I do not want another surgery, is an oophorectomy the way to go? I have sent a message to my MO to get his impressions but wanted to see if any one here has had a similar experience.
Thank you!!
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Also, to those with premenstrual type symptoms, I had/have them to. Prior to cancer, I could always tell when I was ovulating or getting ready to because I would get crampy/sore on alternating sides each month. Early on after being on zoladex I told my MO that as I was getting close to my injection appointment I felt like my ovaries were "starting to wake up" because I would feel things although not like before. He probably thought I was crazy but maybe not because at 56 I seem to not be in menopause yet!
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bam320:
I think chemothetapy put me in to menopause but I think I still have some very residual ovarian function left. My estradiol levels don't fluctuate enough for the fluctuations to be clinically detectable but I can feel a change about a week before my lupron injection. I start feeling better.
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bam320,
I also got diagnosis at 52 years old, now I am 55 years now and nurse told me that the oncologist will order test to see if I still need injection, that is the usual way. Right before last injection, I found I got a small lump on my surgery side, I told oncologist and he ordered an earlier mammogram and add ultrasound for the next checkup, it will be in one week. However, after injection, I found the lump is not that easy to find, or say, the texture is more similar to the other side now. And mammogram shows my calcification is still changing, so just listen to the doctor, if injection is good then do it.
Cathy
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Hi everyone,
I just met with my MO for the first time yesterday. Oncotype was 19, I'm considered peri-menopausal at the moment, so there was no benefit for chemo even listed on my report. My MO said that because the real benefit to chemo with ER+ cancers was to put women into menopause, she advised against it. Instead, recommended ovarian suppression injections for around 2 years + 8 years of AI meds. She did say that I could opt for oophorectomy as a choice too. I'm 53... gotta be close to post-menopausal! Last very spotty period was in February though.
I'm leaning toward the injections (thinking maybe I'd only need a year and not two), but considering the surgery. Wondering if there are any additional side effects from one versus the other that might sway me.
Thanks!
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noey, I responded to your other thread. I assumed they would tell you that, but it never hurts to get another opinion. The oncotype is really not verified yet for node positive between score of 11-18, and studies are still ongoing. And it should also be noted that no "anticipated" chemo benefit, the language is different for node positive reports compared to node negative, assumes the patient will do endocrine therapy. And no one told me that some people cannot tolerate endocrine therapy. The AIs are killing me. I was also pre-menopausal. I did chemo, radiation, 3 months of lupron shots with AI, then got my ovaries out. It is really hard to say the difference in side effects from lupron vs. ovaries out, because the AIs were so hard on me and it was all simultaneous. The lupron did make me insanely hyper the first month. I think ovaries out is better because you don't have the shots every month and probably more hormone swings. I've tried 4 AIs, and still struggling really bad. But once they are out they are out. So try the lupron first and see how you tolerate it.
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I'm about 2 months into exemestane and Zoladex and the joint aches are settling in, particularly in the morning or when I go a long time without moving around. Low back in particular, knees and hips when I get up from sleeping or sitting, one ankle, and my thumbs. So far it's definitely bearable, though I wonder if it will get worse. I'm still able to play my violin. I have not really noticed other side effects yet besides the achiness and maybe a little indigestion.
I picked up my first refill at the pharmacy yesterday and am saying blessings for my insurance. Retail price around $1500 for a 90-day supply and I'm paying $10.
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Gamzu710, I coming up to three years on Anastrozole and Zoladex shots every three months. I have some aches, but it is ok. I stay active and drink lots of water. my aches have not been any worse then the start. Keep moving forward.
Lauren
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I have been on Lupron + Anastrozole now for a few years. Prior to that, I was on Tamoxifen, and despite not having periods, bloodwork revealed I was very much not in menopause (hence the switch to include Lupron, then later switch to Anastrozole). I've had no hormonal bloodwork since, and it's been years.
Last week, I had my yearly oncology appointment and it was over the phone (I've moved). Onco is saying it's time to come off EVERYTHING, which worries me big time. I've just turned 52, was 40 at diagnosis. Strongly ER/PR +. Family members older than me had not gone through menopause near my age.
I do not feel great on these meds, but I'm also very afraid to go off them. MO is saying the likelihood of my not being in menopause now is low (again, minus bloodwork). I was expecting the Anastrozole talk soon, but definitely not the Lupron !
How do they know when its time to come off?
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I’ve been getting leuprolide ( eligard) shots each month for about 15 months now, plus Letrozole, and recently changed to anastrozole. Was feeling pelvic pain and had some bleeding. Ultrasound shows a fibroid. Never had one before. Obviously relieved not to need another biopsy! But then dr google lol tells me that ovarian suppression is the treatment for fibroids. I’m curious, anyone else get them while on OS and AI? It’s about the size of my ovaries. Forget the exact measurements and I forgot the paperwork!
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chemicalworld,
You can always ask for a Breast Cancer Index test, though mine was useless. The test results said that I would not get any additional benefit from hormonal therapy, but that I still had a 19.9% chance of recurrence! So, here I am, still on Zoladex + Aromasin after seven years. By the way, I have had Zoladex vacations, but my bloodwork showed that I still was not menopausal and I'm 54!!! Ugh.
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Hi Lady C,
I am on zoladex and anastrozole for about two years now. Had a bleeding incident about two weeks ago (each time I urinated for about 5 hours, then it just stopped). My gyn thinks it was a kidney stone, but had an ultrasound yesterday, just to check and they found a fibroid . Never knew that I had one before (?). Who knows if there is a connection.
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laurencl - I’m going to follow up with my gyn to ask more questions. Unfortunately my onc-gyn is no longer practicing. I’m going to request a repeat ultrasound in a month or 2. Fibroids shouldn’t be growing with the meds we are on.
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