Women on Ovarian Suppression + Hormonal Therapy Unite!
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I'm scheduled for my third lupron shot and first zometa infusion a week from Monday. Kind of terrified of the zometa, but I already have osteoporosis in my spine and osteopenia in my hips. The hot flashes are increasing and I'm definitely more tired since adding in the anastrozole. Not sleeping as well. Also having lots of headaches. That said, it's all still within a manageable range right now. Hoping it at least doesn't get worse. I got my period during the first month on lupron so am waiting to see if it's really gone this month. They'll check my hormone levels when I go in for the next shot and infusion.
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Wow. Just got the results of my latest estradiol ultrasensitive test. I'm now down to <2 pg/ml after a month on Zoladex (and just 1 shot). Before Zoladex, I was at 592 pg/ml (high because of tamoxifen), so it went down fast.
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Good luck with the Zometa, OTMom! Let us know how it goes. It's got a lot of benefits and most people do well on it, so hopefully that's what you'll experience.
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Hi! I've been on Lupron and exemestane since October 2017. Main side effect has been hot flashes, and those have lessened considerably over the last couple of months. Let's hope that trend continues with summer approaching. I also developed wrist pain early last year and was diagnosed with de Quevain's tenosynovitis. I had a few rounds of occupational therapy, and since then I've been doing the recommended exercises. My wrist have gotten much better lately.
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Zometa was yesterday. I ended up sitting around waiting for blood test results before they could do the infusion, so now I know to go early so that that part is done in time. Otherwise the actual infusion was fine. Today I feel pretty lousy, but my MO told me to be super regular with ibuprofen so that has gotten me through today at least. Hopefully tomorrow is better and not worse.
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Hey OTMom, how long does it take to get the actual infusion? And how have you been feeling since? What's the ibuprofen for? Does Zometa cause joint pain or is it something else?
Hope you're doing well!
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Hi! I'm on day two of anastrozole, taking it in the late morning with food. I'm exuding positive energy everyday lol that I won't have any side effects. Can anyone tell me if I'd feel anything this early on.
Thanks for sharing
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Has anyone's MO brought up Ibrance (Palbociclib) as an upcoming possibility for use in early stage to help prevent/delay reoccurrence? Mine did in passing during a "what else can I do"? convo. I will be starting Zometa after radiation so thanks for those posting about their experience with that one.
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Mine hasn’t, but I will be asking!
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I thought Ibrance was only for advanced/metastatic breast cancer. Is it not?
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It is my understanding that it is still under study for early stage but results look promising.
https://www.oncology-central.com/news/palbociclib-halts-tumor-growth-early-breast-cancer-patients/
https://www.medscape.com/viewarticle/909814
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I’ve had 3 Lupron shots and started anastrozole May 1, today I started to bleed a little bit, it’s noy a lot but enough to have to wear a pad. It’s not the time of month that I’d normally get my period either. Is this normal? Does it mean the suppression meds are not working?
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Mellee, the infusion itself took 30 minutes. Side effects are most common the first time and tend to get better in subsequent doses. Mostly flu-like stuff- fever, achiness, fatigue. I had a low grade fever and felt pretty lousy the day after. I should have taken the day off but had a few things that would have been hard to reschedule, so pushed through with lots of ibuprofen. After that, different levels of tired and achy. My arm still hurts pretty intensely around the IV site, which makes no sense to me a week later, but I should know better than to try to make sense of things. I called the oncology department and they had no idea about that either. Anyway, overall it wasn't terrible. Not fun, but not terrible. It was hard to spend most of the day in the oncology unit- just another reminder that this never really goes away.
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I'm currently part of the clinical trial for Ibrance for early stage breast cancer, though I got selected into the control group so I'm only taking Aromasin. It's my understanding that it's not currently be prescribed for anyone but stage 4.
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That sounds rough, OTMom! Hopefully future infusions will be easier.
I just got my third Zoladex shot today. I've been struggling for the past month or so, really feeling exhausted, irritable, and just plain crappy. My psychiatrist wants me to increase my antidepressant dose, but I'm a little hesitant. I'm wondering if after a bit of time to adjust, I'll start to feel better on the Zoladex. Or is this going to be how it is for me?
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When I first took Zoladex, it made me irritable and moody -- like I had PMS every day. My MO prescribed me Celexa, which helped out quite a bit. I figured that if I'm going to be on this regimen for five years, I wasn't going to spend that five years tired and crabby.
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I’ve been on ovary suppression and AI for about 3 months now. My body is achy, especially in the mornings. My question is how I’m I supposed to tell if I have pain if I develop mets if my body already hurts?
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Fritz,
Typically, breast cancer patients are told to follow up on pain that is unremitting and lasts at least two weeks. If your achiness gets better as the day progresses, it is not unremitting.
I took a Zoladex vacation to see whether or not I'm menopausal. My MO checked my hormone levels, and alas, I am not menopausal. So it's back to the Zoladex for me. MO said we'd check again in a few years! Man, I'm going to be on Zoladex FO-RE-VAH! (Have already done four years.)
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Elaine, thank you for the explanation. My aches do usually let up after I get moving, especially if I take the time to stretch and do some yoga. It's still hard to not freak out over everything though!! I was telling my husband yesterday that I wish cancer had a definite sign that would pop up when you have it. Like your nose turns bright blue or a big C shows up on your butt. None of this wishy washy "it could be cancer, but it could also be hundreds of other things, too." bullshit!
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So I've been on Zoladex since mid-March and the hot flashes seem to be getting worse lately. I'm wondering what to expect going forward? Did anyone find their body adjusted over time and the hot flashes got better? Or is this probably my new normal?
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I’ve been on Zoladex since around the same time as you, and my hot flashes are pretty consistent. Though I also was having hot flashes starting months before from chemo induced menopause.
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Well, I've been on Zoladex for four years, and my hot flashes have gotten better. I should note that they do become more noticeable as the weather heats up. (During cold weather, it can actually be a good thing to have a hot flash while walking around campus....)
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Elaine, that is encouraging to hear! I hope that happens for me. I've been really struggling the past few weeks and freezing my husband out at night with A/C and a bedside fan. He's decided he needs to get a really warm onesie to wear to bed lol.
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Elaine, I’m right behind you with over 3 years on zoladex and I think will be on it forever. I’ve been trying to find literature on long term ovarian suppression but can’t find much on it. So far it’s been convenient as I go to the clinic close to my house on the way to work and it’s typically a quick in and out.
I live in Canada and actually don’t mind being warmer in winters as I always used to be cold! And my hot flashes are a lot less intense. And interestingly they go through phases of low and high intensity which has nothing to do with season or zoladex schedule
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Hot flashes are definitely on the increase over here too. I don't know how to dress anymore. They're waking me up too, which I don't appreciate. Annoying. It's all still manageable, but annoying.
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Melle, OTMom -- I started OS in Oct 2018 and AI in Dec 2018. Hot flashes were pretty present an annoying through February 2019. If I drink alcohol I'll wake up with a night sweat, guaranteed. Otherwise they seem to be gone! I saw an amazing acupuncturist who helped tremendously during the time they were bothersome, I highly recommend investigating that. But I think that is a symptom that tends to subside.
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And also -- mood swings have improved dramatically. I'm still probably more quick to get to irritable than before, but I'm not overcome by huge rages or crying fits like I was during the early months.
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Interesting about acupuncture. I've been thinking about trying it just for general well-being/energy/sleep. I didn't realize it could help with hot flashes too.
I don't drink much, but the other night I was out with friends for a bday dinner and had one cocktail. I ended up having a crazy intense hot flash. I almost had to leave I was so miserable! So I guess alcohol is a trigger for me too.
One thing I recommend for night sweats are PeachSkinSheets. I got them when I started tamoxifen. I was drenching my sheets at night and it was so uncomfortable. The sheets are great because they wick away moisture, so you don't wake up clammy.
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glad to see this thread here. My oncologist also referenced SOFT/TEXT trial, and put me on trepreline and tamoxifen, I have been on these 2 for almost 2 months, and still haven’t felt much SE yet.
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Mellee, thanks for the sheet recommendation. I just got some bamboo pjs for better wicking. I'm not having drenching sweats as often- more waking up because I'm hot, then cold, etc. But they at least help with the rebound cold from damp pjs. And they're super soft.
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