Women on Ovarian Suppression + Hormonal Therapy Unite!
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Your FSH is supposed to be very low if you are on ovarian suppression which is different from natual menopause.
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Well I had my esteogen levels checked 2 times and the zoladex has apparently not been shutting my ovaries down...my estrogen is completely normal.. all these months of begging my dr to check and them refusing... at a huge research hospital... I'm devastated..
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Thanks Steph! Adel- I am so sorry to hear that, how frustrating! I am also at a large research hospital and same thing...my oncologist does not test levels. I had mine done because I asked my OBGYN to run them for me for peace of mind. It is a simple blood test so I have no idea why it isn't routine for all OS patients?
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My period stopped during chemo, so my oncologist believed that my estrogen levels would be out of whack shortly thereafter. But, because I was 95% ER+, she didn't want to wait to start OS and the AI. So, we didn't test levels then. Four years later and I'm 51, the average age for menopause. We will be taking a Zoladex vacation and will test my estrogen levels after that vacation. If they indicate menopause, we will stop the Zoladex.
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I get tested at every 6 mo checkup. They show that my level is at menopausal. My period stopped after 2nd dose of chemo. I don’t know if any of you have experienced bloating with zoladex injection? I’ve had monthly injections since dec 2016 and this last time I got severely bloated - looking like 3-4 mo pregnant. I was so worried (there was pain at injection site too) that my doctor ordered abdominal cat scan to rule out abdominal bleeding or vascular or organ damage. Bloating is still there. They say it happens to some patients at every injection... I feel like someone messed up the dose (give me a 3mo injection instead of a monthly dose). My hot flushes have come back too and my cheeks are flushed - just like when I first started tamoxifen 2 years ago)..
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I feel like I got bloated after my first Zoladex injection, although tamoxifen also makes me bloat at times so I can't be sure it was due to the shot. I'm also going through radiation right now, so it's hard to sort out other side effects. So far, I haven't been feeling too bad. Better than I expected, really. My main issue is broken sleep. I usually sleep like a baby, but now I'm waking up super early and having trouble getting back to sleep. So now I'm tired and cranky on top of everything else!
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Does anyone take baby aspirin for preventing recurrences? I've seen interesting research.
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Wondering if anyone has any insight. I started Tamoxifen about 2 weeks ago. I finished Chemo In January and had a mx 4 weeks ago. The plan was that I am to get my ovaries removed and then switch to an AI. I'm 31 and have the BRCA2 mutation which is why the plan is the way that it is. I spoke to the obgyns secretary and she said It's likely to be fall before I can get the surgery. SO I was wondering if I should bring that up to My MO and have ovarian suppression with the tamoxifen while I wait. Not sure if a few months will make a difference , but was wondering if anyone else went that route?
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I am taking low dose aspirin Mellee. There is a current clinical trial that my onc mentioned building on the research that has already been done but I didn’t qualify for it. So I take it as a “why not?” in case it does help!
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Makes sense! I think I'm going to do the same, but I'll run it by my MO first just in case there is anything I need to watch out for.
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I have been taking baby aspirin every other day since I finished radiation! A research I read indicates that taking baby aspirin 2-5 times/week is most effective to prevent recurrence, that's why I take it every other day.
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Hi B-A-P,
I'm also BRAC2 and after 4 months on Tamoxifen my uterine lining was dangerously thick. My MO didn't explain that the Tamoxifen blocks estrogen to breast tissue but gives estrogen to the uterus, bones, etc., It also has a warning for causing uterine cancer and a thick lining is a big risk factor.
Because I needed to continue Tamoxifen(AL causes severe bone loss which I already have) and wanted to avoid the thick lining risk, I had a hysterectomy. I didn't want to do it but I did. Due to the risk from BRAC2 of ovarian cancer I had my ovaries removed. Didn't want to do it but I did.
I hope you don't get a thick lining from taking Tamoxifen even for a short time like I did. Not sure about ovarian suppression but maybe someone else will know. I would bring up your concerns to your MO though.
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I have been on the Zoladex + Aromasin combination for over two years now and hot flashes and joint pain were my worst side effects. I took curcumin for a while and that seemed to help my joint pain, but ultimately it was exercise that took care of it. I stopped the curcumin and currently take calcium and vitamin D. I'm seeing a physiotherapist to help loosen scar tissue from my mastectomy and realign my body, which is off balance since the mastectomy and radiation. My baseline dexa scan was normal and I had another about six months ago and while there was bone loss, I am still in the normal range. My oncologist doesn't want to do anything this second and we will see the next scan.
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ny1980 - I keep hearing that about exercise. My MO said it's also as important as hormonal therapy in preventing recurrence. So I really need to kick up my routine.
I had my first Zoladex shot almost a month ago, and after the first few days, I'm not really noticing much in the way of side effects. I have already been on tamoxifen for 2 years and my body has adjusted (night sweats and aches and pains have largely went away). The only thing I've noticed from adding Zoladex is that my hot flashes have gotten a little bit worse. But they're still not that bad. I'm on Lexapro, so that's probably helping. I was experiencing hair loss on tamoxifen, too, and that seems to have gotten a bit worse. But I have thick hair, so it's only noticeable to me at this point.
I'm hopeful that when I switch from tamoxifen to exemestane things won't get a lot worse. I'm getting my second shot on Tuesday, and my MO will check my estrogen levels again. I think she wants to see what happened since the Zoladex shot, as my estradiol was through the roof before I got the shot (apparently tamoxifen can raise estradiol levels in the body, even as it blocks estrogen in breast tissue).
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I am in the same situation as adelozier, I was on lupron and anastrozole but the oncologist switched me to zoladex and exemestane in December. The last time my hormone levels were checked was November...so now my levels were checked and whoops I’m not in menopause. I have to get blood work every month chem panel and CBC but ugh I was so sad to find out it wasn’t working.
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Mom4four, so what's the plan for you now? Do they have any ideas for lowering your estrogen levels or do you have to switch meds?
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I think I found my group ☺️ I was on T from April 2018 to September 2018 then switched to Lupron and Arimidex. Not too bad the first while. Now I’m experiencing the joint stiffness (I do the Frankenstein walk and have resorted to sleeping splints for my wrists and hands)and wicked hot flashes along with broken sleep. I hoping these effects peek and then subside. Also, the second week after my Lupron (I get them monthly when I get my port flushed) is tragic mental health wise. Very brutal. Anyone else experience this wave of suckiness (more than usual) monthly? I’m wondering if it is related to me old cycle?
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Welcome Joyseeker! Interesting that you experience worse side effects on a monthly cycle. I've just received my second shot of Zoladex, so I'll have to see if it continues, but I definitely noticed the usual symptoms of fatigue, low mood, bloating, etc. around the time I should have got my period. I figured that would go away as my hormones level out, but I'll keep an eye on it.
I'm definitely experiencing the broken sleep (never had sleep problems before). Mainly waking up too early and having trouble getting back to sleep. And the hot flashes are definitely getting worse for me. I have a fan by my bed going full blast, which helps.
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Hot flashes: how often and how long are yours? Mine seem to mostly hit after 6pm, and I get a handful that last 1-2 minutes each, usually stopping by the time I go to bed. Should I expect them to get worse? I’m on month #2 of Zoladex and Femara.
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Has anyone's MO offered Zometa?
Adjuvant Bisphosphonate Therapy
Bisphosphonates are a class of drugs that inhibit bone resorption. They are used to treat osteoporosis, as well as hypercalcemia (high levels of calcium in the blood) and bone metastases in patients with cancer.
Recent research suggests that the bisphosphonate drug Zometa® (zoledronic acid) may also have a role in improving outcomes among women with early-stage breast cancer.32 A phase III clinical trial by the Austrian Breast Cancer Study Group enrolled 1,803 premenopausal women with Stages I-II, hormone receptor-positive breast cancer. Following surgery, all patients were treated with hormonal therapy; this consisted of Zoladex® (goserelin) for ovarian suppression, plus tamoxifen or Arimidex® (anastrozole). In addition to hormonal therapy, some patients were also treated with Zometa.
Compared with hormonal therapy alone, the combination of hormonal therapy and Zometa reduced the risk of cancer recurrence by 35%. The researchers concluded that the addition of Zometa to hormone therapy among premenopausal women with hormone receptor-positive breast cancer may improve recurrence-free survival.
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The MO I consulted with at UC Irvine would have put me on Zometa. It's good for counteracting bone loss from AIs, plus there's evidence it helps prevent bone metastases.
But my current MO doesn't want me to start it unless I start losing bone density. I'm going to talk to her again about it, but I think the issue is that it isn't without side effects. There is also a rare but serious risk of bone necrosis in the jaw. Don't Google that unless you want to be traumatized!
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Here are the clinical guidelines from the American Society of Clinical Oncologists (ASCO) on the use of bisphosphonates. I find it helps to go in with stuff like this when you're discussing with your MO:
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Thank you mellee! I have an MO appointment tomorrow and will take that with me. I'll post his opinion here after just in case anyone is interested. Thanks also for the warning but of course I Googled the jaw thing immediately and now I can never unsee that. ;-)
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I stared zometa once every six months when I started Arimidex in October. Next dose for me is in May.
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Hello all! I have been a lurker here but I have started my Zoladex shots this month and am on exemestene for my AI. My recent dexa scan showed osteopenia, so my MO wants me to do the Reclast (Zometa) infusions. Garnersuz is that why your MO wants to put you on it?
I am terrified of this jaw thing and I haven’t even looked it up yet, but the name alone makes me think this is a very very bad SE!
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Not going to lie. It totally freaked me out too. But my dad (who is a retired BS) reminded me that it's rare. Even so, it's important to discuss with your MO and be aware of what you should be doing to minimize the risk and monitor for problems.
If you're on it, you need to be really really on top of your dental care and oral health. This goes over some of that info: https://www.breastcancer.org/treatment/side_effects/osteonecrosis
The risk also goes up over time, so some of the studies talk about taking drug vacations.
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Hello! I started Tamoxifen/baby aspiring last Saturday and will be on this until my reconstruction/ovary removal surgery then will be switched to a AI. So far no issues but I did have to stop my Busiprone at night because this was causing hot flashes. This was before I started Tamoxifen. I am overweight and concerned with weight gain. I have been on the roller coaster of hormone issues since 2013. Thyroid, pituitary gland, endometriosis, now BC.
I know I have to get back to exercising and really watch what I eat!
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Hi Mellee, that's why I am still reluctant to start Zometa or other bisphosphonates medicine. Because the longer you are on it, your risk of getting jaw necrosis is higher! My last bone density scan showed my spine had very mild osteopenia (-1.1) but other parts of my body were still fine, so I told my onc I won't start Zometa until my next bone density scan later this year shows worse bone density. She was agreeable with it. She also said I can start with oral form of bisphosphonates at that time. In terms of Zometa can prevent bone met, I think I have seen mixed results from different studies.
To improve my bone density, I maintain healthy weight, I am able to maintain my BMI 22 or lower for more than a year. I do weight bearing exercises everyday. I take 1200mg or calcium, 5000iu Vitamin D3 and very important I take vitamin k2.
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My MO said that studies show that the loss of bone density largely reverses once you go off AIs, so I think that's guiding her thinking on the use of bisphosphonates. But I haven't seen the studies she's talking about. I'm going to look into it more.
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I can't remember if I've posted here yet or not. I just had my first infusion if Zometa, chewed a few tums, a shot of Zoladex and my Aromasin is ready to be picked up at the pharmacy. Had a hormone panel done beforehand, haven't had a menstrual cycle since October.
Zometa every 6 months, Zoladex every month and Aromasin pretty likely daily.
Fritz- My hot flashes are still rocking and rolling mainly at night, I get facial flushing still occasionally and some night sweats. I'm a little sore still from surgery last week but that Zoladex shot in the belly was quite the zinger!
I have rads coming up pretty soon, likely starting in May. Everything seems super fast right now. Trying to eat cleaner, going to lose some of the weight I gained during chemo, and still trying to work some and get decent sleep. MB1
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