Women on Ovarian Suppression + Hormonal Therapy Unite!
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Garnersuz 77, my estradiol, like yours, is less than 5. However, my FSH is still in the premenopausal range, but it is slightly higher than the number before my cancer diagnosis. I think OTMom said FSH is just for reference. My MO is sending me to an endocrinologist.
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buttonsmachine... I'm enjoying your posts. As for the hipocratic oath saying "first do no harm," that went out the window decades ago. No one should have to fear the Medical world except for genuine unintentional errors.
I'll probably go on Arimidex after radiation and am thinking that I'll never get rid of hot flashes. I just hope joint pain isn't a part of it too
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Hi everyone,
I am joining this thread because my MO wants me to start Lupron in the next few weeks to stop my period. I am already on Tamoxifen. I am really scared to take this drug. I've read so many reviews on it and almost all of them are bad. I really don't know if I want to take this or not. I thought Tamoxifen would be enough, but apparently not. My ovaries just had to start working again after chemo. : (
What are the main side effects you have? I'm especially worried about mood swings and depression because I am already prone to depression and anxiety. I do take Lexapro, though, but even that doesn't completely help my depression. Also, did anyone have any digestive issues on it? I have IBS and I'm worried it may exacerbate my issues.
Thank you.
~Stephanie
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Hi Stephanie, I totally get the fear. I felt exactly the same. But as my MO told me, ovarian suppression is not irreversible. If you can't tolerate the Lupron, you can stop. And don't assume you'll feel terrible on it. Everyone reacts differently, and some people do really well. I actually felt okay on Zoladex combined with tamoxifen (and I was also going through radiation when I started Zoladex!). I noticed some hot flashes when I added OS to tamoxifen, but that was about it.
When I switched from tamoxifen to exemestane a few months later is when I started struggling more with bad hot flashes, fatigue, and depression. But I upped my Lexapro dose from 10mg to 20mg and that pretty much took care of the mental health stuff. The hot flashes are still really bad, but I'm experimenting with acupuncture and Chinese herbs and carrying around a fan at all times and hoping it eventually gets better!
I haven't personally had any gastrointestinal issues.
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Hi Stephanie, you are not alone in your fears. I had exact same fear when I started Lupron. As mellee said, everyone responds differently, and don't assume the worst! My first injection nurse told me that hot flashes are the most common symptom. I also experience insomnia & constipation. The bright side is there are usually ways to cope with these problems; it may take a little time to find the right solutions. I hope all goes well for you. Good luck.
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Cpeachymom I just saw your post. Lol! Babies!! 😂 that's so interesting!!!
My only scientific explanation is that you get some GOOD nervous excitement with the babies and even thinking about them sparks that excitement! Because your excitement hormones (epinephrine and norepinephrine) are getting stimulated, so does the hot flash???
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Thank you, mellee and SavingGrace for the replies. I guess I will give the Lupron a try at least. I talk to my MO about it next week.
SavingGrace, is your constipation really bad on it, if you don't mind me asking? That's one of the things I'm concerned about.
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I have been on Miralax for a long time prior to my cancer diagnosis. When I started my hormonal therapy this February, Miralax all of sudden does not work anymore. My MO recommended magnesium and together with Miralax; I am back to normal with these two meds. Magnesium combined with vitamin E is sometimes also used for treatment of hot flashes, so I guess it is like killing two birds with one stone. I hope my answers help.
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Boring meetings were a major hot flash trigger for me! The ones that some big ego idiot goes on and on and wants to have their way or the ones that half the attendees don't know why they're in the room. I'd get so dizzy that I had to step out of meetings a couple of times during my first try with AI. I'm glad to work from home now, I can just roll my eyes, unless we're video conferecing, I just keep the room temperature very low!
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Thank you for the reply, SavingGrace. Your answers have been helpful. : )
I will give the Lupron a try at least and see how it goes. I'll keep everyone updated.
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Hi! Has anyone done both Oncotype DX and the Breast Cancer Index (BCI) test? Was your risk assessment much different? Thank you.
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@ peridot180 Stephanie - I have not been on Lupron all that long (3 injections starting back in April), but so far I have not had any bad side effects from it. I have had warm flashes, but since I was typically always cold anyway, they have not been too bad. Knock on wood, I have not had any of the other ones. Maybe it won't affect you badly either.
I have had more problems with Anastrozole causing me joint issues.
Hope the Lupron goes well for you!
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Today I had my second shot of Lupron. So far, I didn't have any side effects other than feeling a bit more tired than usual. It may be also the double mastectomy I had two months ago. When I come from work, I take a short nap for 30 min or so and I feel just fine.
Hope this helps.
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I’ve been on OS with AI for about a year. Had spotting a couple times, but recently got my period. I was premenopausal before treatment, but hadn’t had a period in 20 months. Anyone else see their period return when taking zoladex or examestane? My most recent estradiol is about 15 pg/ml.
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I am on Lupron & Femara and have been since February this year. I am too pre-menopausal. Since February I had my period returned once. After the doctors ruled out any possible GYN and endocrinological issues, the endocrinologist said it is possible to have a breakthrough bleeding during treatment.
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Saving grace,
Thanks for your post. What is break through bleeding? Is it the same as a period, in the sense that you ovulated? I’m still waiting to see what they will do to check me out gynecology. My GP suspects my ovaries are not fully suppressed so I had an actual period, but also said it’s not her area of expertise so I’m waiting to hear from my MO
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I have not had spotting or periods since starting Zoladex, but one thing I would make sure is that you're on the monthly OS shot, not the the 90-day shot. My oncologist said that she found that the 90 day shot isn't always reliable for suppressing estrogen throughout the full three months. She'd measure some patients' levels at 60-75 days and find they weren't post-menopausal. So she only does the monthly shots, which were also what was used in the TEXT and SOFT trials that proved the efficacy of OS + AI for menopausal women with breast cancer.
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Thanks for the tip Mellee! I was using Zoladex monthly. Apparently my estradiol is post menopausal but my other hormone numbers are not, plus with my period she wants to switch me to Tamoxifen and try something else for ovarian suppression.
Anyone using something besides Zoladex for ovarian suppression? Not sure what to expect
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Anyone here using buserelin for ovarian suppression
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My ovaries are removed in May and I am on letrozol. It was really busy in the beginning, but now is much better with side effects.
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Do you all go to your oncologists to get your injections? It's a slow and frustrating process for me each month. Right now I only work 32 hours a week, so I have one day per week off and do all of my follow up appointments then. Unfortunately we also are having financial issues, so increasing to full time is probably necessary (assuming my body will cooperate with a busier schedule). I just can't see taking half a day off each month to get the injection at that point, plus all the other bits of time I need to take for other appointments, kid stuff, snow days... How do I live a normal life while doing this?
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OTMom,
I guess it depends on where you live vis-a-vis your oncologist. I live 15 minutes away from my oncologist's office, and I get it at 9:00 am in the infusion room, just after I've dropped off my twins at school. I get to my office around 9:30 am; no one notices.
Of course, I chose to be treated at my community hospital rather than drive to the city where there's an NCI center. Is there any way you can get your care (or at least the shot) transferred to somplace more local?
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It's 15 minutes from my home, but 30-45 from where I work. Potentially longer with traffic. The other hospitals I could get it transferred to are actually in Boston, which would be a bigger hassle commute-wise and even farther from work. The problem is, it always takes a minimum of an hour once I'm there even though the shot itself takes no time at all. Last month they forgot to order my shot and had to call around to other hospitals to get one and I had to come back later that day. The month before that it got stuck in the pharmacy machine and I had to come back later in the day. And on a good day it still just takes a long time for them to call me back, take my vitals, decide whether or not they have to take my blood, and then do the injection. I guess I don't understand why it has to be done at the oncologist's office rather than something that could be done at home or something. Women give themselves lupron injections as part of the IVF process. Is this formulation really that different?
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Wow! That is a time-suck. It usually takes me 15-20 minutes to get my Zoladex and whatever else. I never get my blood tested, but I get my port flushed every 8 weeks and I get Prolia twice a year.
From what I gather, Zoladex is an expensive drug, as is Prolia. Maybe, insurance requires that it is done by the pros? (I actually had an inexperienced nurse break the Zoladex needle once, and I had to wait 45 minutes for her to get another one.)
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Yeah I hadn't thought about it potentially being an insurance requirement. That would make sense. Still frustrating though. I guess I need to choose whether it's more important to stay on treatment or work full time. I also do zometa infusions 2x year and between that, the injections, and the follow up appointments it adds up to a lot of time off if I were scheduled to be working on those days. I just did a midlife career shift and was less than a year into my first job out of grad school when I was diagnosed, so I haven't had time to bank a lot of time off yet and am also paying off student loans, so really need to be working more than I am.
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I feel your pain, OTMom. I really like my oncologist, but am considering switching to someone else because the cancer center where she works is so inefficient. I often wait 45 minutes to an hour for the shot, which is nuts. On the visits where I get my shot, blood drawn, and see the oncologist for a checkup, I am usually there for around 3 hours. I've found that wait times are better in the morning, but even then I don't get my shot right away. It really starts to wear on you.
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I just had my first injection of Zoladex today. The MO office made it sound like you just stop in at the lab, they would give you the injection, and then you leave. They said it's pretty quick. I didn't realize until I got there that I was going to get them in the infusion therapy rooms. Once I get called back, they have to order it from the pharmacy, wait for it, and then give it to me. It wasn't terribly long but I was there about a 1/2 hour or so. I also thought they would numb or ice the spot where they do it. Nope. They just pinch my skin and insert it. Hurt more than I thought it would but not terrible.
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mocame-You can request ice beforehand. I had to as it wasn’t offered. Now they know and any of the nurses will get me one ahead of time.
I’m also with the rest of you ladies with the wait times. I’ve been there well over an hour before. It is tedious.
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They aren't numbing you???? I get a cold numbing spray each time before the injection, so the shot is completely painless. I would ask for that. I honestly can't believe they aren't offering that automatically!
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mellee, I actually asked if they are going to numb me and she said no. She said the quicker they do it, the less it hurts. I don't know how long it normally takes but it was a lot longer than just getting a shot. It ached for a few hours afterwards and it's sore to the touch now. She put it in right where my waistband of my jeans is and just to the side of the center of my stomach so my jeans rub it a little. May need to put a bandaid on it if it bothers me too much.
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