Bottle o Tamoxifen
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Trvler, 😳! I am not seeing a cardiologist--never had a need before now. My MO did not suggest I see one. How was yours diagnosed? Who diagnosed it?
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Robinda, I was having increasing vision issues after chemo and tamoxifen. I finally went to the optometrist a couple weeks ago. My prescription changed DRASTICALLY from a year and a half ago. The optometrist said it was likely due to the change in hormones brought on menopause/chemo pause.
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Robinda, Personally I think most of the changes we experience are due to the long term effects of chemo, not the tamoxifen. BUT I don't know that you had chemo.? I have experienced vision changes, but I'm also getting older. The chemo is said to cause dry eyes, and my opthamologist says, yes i have dry eyes. My nails are dry and brittle where before they were strong and i never worried about them peeling or chipping. My hair is growing back slower in some spots, and my skin is dry. I tend to blame a lot of stuff on chemo because, realistically, it's a poison and we are recovering from the effects of being poisoned. I had hot flashes before chemo and tamoxifen. I had stiff achy feet before chemo and tamoxifen. Chemo caused swelling and water retention in my legs, not tamoxifen... my bad mood...well I blame it on cancer :-)
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thanks for your responses!! I had dcis very small, no chemo or radiation just tamoxifen. My "good" eye has gotten worse. Started tamoxifen in April. Eye dr did all tests and nothing bad showed up. He's not sure if it's the tamoxifen and told me to mention to oncologist..
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molliefish, I blame my bad mood(s) on cancer, too.
Zoladex update: I've been dizzy and fatigued for several days. My MO's office doesn't seem to want to call me back, so I guess I'll follow up with them next week. Leave it to me to handle all the hard-core stuff (chemo, rads, surgeries) and then flake out when it comes to endocrine treatments.
musosgirl, DON'T WORRY. Breathe! Call the doctor and explain what you read here, and maybe they'll do an echo or some such thing. You'll be okay!
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Robinda, that's funny. Your eye doctor told you to ask your oncologist about dry eyes. When I started having problems with my eyes, my oncologist told me to ask my eye doctor. Apparently, nobody knows!
Anyway, my eye doctor did not see any nerve damage or anything else horrible, just very dry eyes. Could be combination of chemo, tamoxifen, chemopause, etc. I'm on Restasis now and my eyes are doing much better.
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Oh I was cranky last night.. sorry about that...
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I'm pleased to report that my Tamoxifen side effects seem to be evening out with time and intervention. I'm not having a lot of leg cramps--still a few, but not as many or as bad--since I started taking mag citrate powder. My joints are better with exercise, glucosamine complex, and curcumin. I do have some endometrial thickening, but may have had it before Tamoxifen. Anyway, I just wanted to say that at 10 months the initial problems have drastically reduced.
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So I hung out in the ER most of the afternoon--still here actually. No blood clots and no fluid around my heart. Everything looks normal. I have had headaches the past two days as well, so that made me really anxious. ER doc is calling my MO to discuss the port, maybe get it out sooner rather than later. She said she will admit me if I am not comfortable going home, but that on a holiday weekend I will just lay around feeling uncomfortable and she would rather I do that at home away from all the germs.
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Aw, musosgirl, hang in there. Good news re: clear cardiac workup!
ksusan, thanks for the update. I'm finding that my tamoxifen SEs are leveling out at four months; let's hope the Zoladex SEs do the same.
molliefish: TAMOXIRAGE!
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Actually I don't have dry eyes..my vision got worse in one eye..
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Tamoxifen and Vision <-----link
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thank you!
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Hi Everyone,
I don't start Tamoxifen until a couple of weeks after rads is complete, but I'm trying to find info on the bottle I picked up. I should've asked the pharmacist and can on Tuesday, but I'm looking to see if the brand that I picked up, Mylan, is gluten free and can't find a recent definitive answer. If I'm understanding what I've found so far, Mylan stopped manufacturing Tamoxifen last year sometime and started up again. I'm very sensitive to gluten and am already apprehensive about starting Tamoxifen, and I want to not stack the deck against me in terms of SE.
Thank you and have a Happy and Safe 4th!
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polka - you can get a list of the inactive ingredients at drugs.com. Just input the number printed on your pills
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Musosgirl: Sorry I didn't see your question. We have been VERY busy with a new puppy. I am glad your heart checked out ok. I hope you are feeling better today.
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Hi
I took Tamoxifen back in 2000 after my DX for IDC, but stopped after 2.5 years so that I could get pregnant (I was DX at 27).
I recently had a biopsy that showed FEA and ADH in my BC breast. My surgeon recommended following up with my oncologist about chemo prevention/hormonal therapy. After a visit to my oncologist he agreed with my surgeon, and I'm starting back on Tamoxifen in August. I currently take Zoloft and have an appointment later this week to change to another med that won't inhibit the Tamoxifen, thus the delay in starting.
I'm really not looking forward to starting Tamoxifen again. The last time I had hot flashes, weight gain, and it caused me to develop ovarian cysts. My GYN didn't believe the Tamoxifen caused the ovarian cysts, but I never had them before taking Tamoxifen, and I haven't had them since stopping the Tamoxifen. It appears there have now been studies that have proven the link between ovarian cysts, Tamoxifen, the absence of high dose chemo, and being on the young end of pre-menopausal.
I'm hoping being 43, though still pre-menopausal, helps me avoid the cysts this time around. 😁 It's also my understanding that a benefit of being on an anti-depressant is that it may help with hot flashes and mood swings as well. So much, yet so little has changed in the last 16 years
Tracy
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I am struggling with tamoxifen. I have been on it a little over a year, and I have hot flashes, vaginal atrophy, and anxiety. I did not have any of this before the tamoxifen. My doctors are not helpful. They just say I have to take the tamoxifen. I'm considering stopping it AMA. Wondering if anyone else has any advice.
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Runner: I assume you are a runner? I found that exercise (I bike and run) help with the hot flashes. When I don't exercise for a couple weeks, they get worse. That what works for me.
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Does anyone one have a suggestion for nails? I'm at wits end. They keep chipping, peeling and are really thin. I have never had such short nails. They did fine during chemo, but started about 6 months after starting Tamoxifen. Is this a SE?
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Runner- I'd be afraid to stop it. You are Her2+ which is the real aggressive type. There are meds for anxiety and hot flashes while suck we all get them at some age. I guess talk to your MO about the plus vs minus of stopping it. GL
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I know I should stay on the tamoxifen. I am getting pressure from my husband to quit taking it as obviously this is affecting our sex life tremendously, and I don't think he understands exactly what the drug does. I do exercise a lot and that is my therapy and helps. However, I am still pretty miserable with all the side effects I mentioned. I also feel like I'm getting kind of whiny and there's nothing anybody can do so I feel kind of hopeless about it. My oncologist pretty much refused to prescribe an antidepressant for me, although I don't want to take another drug either. Just feeling kind of isolated and alone with this problem. I should probably seek out a support group of some sort. Thanks Bikefam and Artista for responding, I appreciate your comments and support.
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Not all MOs feel comfortable rx'ing anxiety meds. Maybe talk to your pcp?
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My PCP was not helpful either. She said she would never prescribe something without okay from the oncologist. She pretty much told me to buy some Astrogel and that's it. When I persisted in my complaints to her, she said something like, "Yes, but they got you all fixed up, it's a small price to pay." I wanted to say, I've paid a lot of prices and I'm pretty mad that cancer has made me have to live like this. But you know how other people just don't get it. I'm sure you all can relate. Thank you for taking time to respond to me.
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Not sure I'd keep that pcp if she said that to me. Many of us are on meds to cope with this. Might be worth a change in docs if anxiety is a problem enough.
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Artista, if you don't mind sharing, can you tell me what medication you are on and what side effects it helps you with? I am mainly concerned about the hot flashes, the anxiety, and vaginal atrophy.
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I am horrified that a medic can say "they got you all fixed up" The vile medications and their effects are not a small price to pay - they represent ongoing worry, frequently dreadful side effects and a constant reminder of what one has been through - and the possibility of a recurrence. I know one should be grateful for doctors and surgeons attentions in that one is still alive but ongoing effects on quality of life are incredibly important. They need to wise up. All the best to you all.
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Runner, I'm really sorry that you're going through this. I agree with others: try to stay on tamoxifen if you can, because it really does provide a statistically-relevant benefit.
That said, relationships are important, and your PCP and oncologist sound like they need to get on the same page. I'm a big believer in demanding things if need be, and it sounds like you might be to the point where you need to make some demands. Try Effexor; it might really, really, really help you.
Big hugs.
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I just started taking Tamoxifen last week and I'm trying to be prepared for any side effects that come my way. Has anyone used Young Living Essential Oils to combat different SEs? Like Progessence Plus or anything else? Any oils your dr told you not to use?
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Runner---Maybe you could try to find a holistic/naturalist doctor to help you with your SEs. When mine got so bad that I wanted to quit Tamoxifen, that's what I did. I had different SEs from you such as serious joint pain, nausea, dizziness but did have hot flashes as well. He put me on turmeric and ginger for the joint pain and added magnesium chloride for that as well. Then he put me on magnesium glycinate and a product I buy from Amazon called iCool for the hot flashes. Then he strongly recommended yoga, both for the joint pain and for anxiety as well as the hot flashes. I took everything he said and put it to good use. My joint pain is now nonexistant and my hot flashes are down to 3 or 4 mild ones a day. They no longer keep me up at night. And the anxiety is gone as well although that could be just time making things a little easier. Whenever anyone asks me what my advice would be when starting out on this journey, I tell them two things.....physical therapy after lumpectomy or mastectomy and a holistic doctor to help treat the SEs of treatment without resorting to more Rx drugs. My BS said when I started Tamoxifen that it gives me a 50% reduction in the risk of recurrence and I think that's a pretty big number to give up when there may be help for you.
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