Starting/declining hormone therapy Nov, Dec, Jan 2018
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I love your post. It’s not TMI, it’s helpful. Thank you
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I am one who thought I was doing ok on Anastrozole, but due to joint issues, hair loss and a fractured elbow I stopped it after three months. I was switched to Exemestane and added in Fosamax. Last appointment I was told in my case there is only a 2 percent improvement with the AIs.
Got my bone density results and they have dropped 10% after only 6 months on these drugs. I now have osteoporosis and am very upset, I really think each one of us needs to be given a personal risk benefit analysis so we can make the best decision for our bodies.
Basically I have doubled my fracture risk not to mention all the other side effects for 2% improvement in recurrence rates. Not sure it's worth it for Me!
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I found this article about osteopenia and Fosamax and found it interesting. The most interesting thing is the part where they talk about how distinctions were made rather arbitrarily.
https://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-the-prescription
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bennybear- That is scary how fast that affected your bone density! It would make sense if we were given a detailed risk benefit analysis in order to make a decision about continuing these meds in the face of these SE's.
So went to opthamology today. She says that my eye problems are not caused by the tamoxifen. I had vitreomacular adhesion. So what the optometrist saw was a cyst that formed from that process. She said the cyst had resolved, and the blurry spot in my vision should also resolve as my retina heals. This is common she said, but that I was young for it to be happening, I told her I have heard that before. So after I get the ok from my MO I will start back up on the tamoxifen, and follow up in 6 weeks for a recheck on the eye. Thanks for all the good thoughts. I hope everyone is having a great day!
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Dani - so good to hear your eyesite will be better and good to know its not the Tamoxifen. Thanks for the update.
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I'm so glad to hear this, Dani! I'd been wondering.
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Good news, Dani! I’m glad to hear you’ve gotten some answers
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Just completed chemo three weeks ago, met with my oncologist today and I’ve made the decision to have my ovaries removed and I’ll start Arimidex in one month. I’m pre menopause so he told me riskbenefits of tamoxifen and the AI’s and left it up to me, I feel good about my decision and I’m ready to move forward.
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Dani hope your eyes continue to improve!
Thanks for your kind words. I think what happens is that the estrogen inhibition almost is like a fast forward button on aging. Some of these may happen anyway but the complete inhibition of estrogen accelerates the process. May be why your eye issues are being seen at a younger age.
So discouraging. I have also been told by a Dermatologist that my MO referred me to for my hair that the lack of estrogen is causing hair loss.
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Hello all-I was on this post a couple of months ago as I was starting Tamoxifen mid January. I hope all is well with you wonderful women and everyone is learning what works best for them. I am happy to report that two plus months in with Tamoxifen I have not had major side effects. Experienced an increase in anxiety and adjusted that medication and so far so good. I just wanted to share this little bit of positivity with you all. Best wishes!
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I started Tamoxifen middle of March and I am monitoring all the changes. I had an UTI episode about 5 days after started T. I am also noticing a vaginal discharge which i did not have.
I don't know if they relate to T. Anybody else had a vaginal discharge when started Tamoxifen? Is this something that can be treate with OTC, should i call the GYN and discuss or it will disappear soon (wishful thinking!)
thank you!
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Hey apple juice,
I think that discharge can be related to tamoxifen. But does it smell like your usual discharge/vaginal smell or different?
I got what I think is a yeast infection (the med onc agreed that's probably what it is). I think it's from antibiotics but honestly I've only got one before once though been on antibiotics plenty of times, and I wouldn't be surprised if the tamoxifen messing with my hormonal eco system somehow contributed. I'm doing the OTC treatment, but if that doesn't work I'll go to my onc and or gyn and try to figure it out.
I saw my surgical oncologist nurse practitioner for a manual exam this week. I mentioned to her my travails on tamoxifen and she was so sympathetic. Honestly in some ways more validating than the med onc. She said that it can be very hard drug on your body (for some women), and plenty of women struggle with it. She said that she's heard from her patients that they will split the pills and go down to a lower dose - and then she said, 'but don't tell the med onc you heard it from me!'
It's fascinating how deeply specialized each of these areas is, and their different perspectives.
I was able to switch my work schedule to earlier in the day - starting earlier ending earlier. Morning is the best time for my fatigue so I'd been waking up super early anyway to do work. Yesterday I got home at my new earlier ending time and laid down/napped for about an hour and a half. Then felt almost human in the evening!
I really really hope my body can adapt...
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Oh also,
My med onc team was very encouraging to me to contact them with symptoms as soon as possible, even if they turn out to be nothing/unrelated. They'd rather be on top of things and do everything they can to make you feel supported and have the best chance of being successful on the tamoxifen. So even though it may just be a yeast infection or unrelated or ultimately not a problem (some women just have more discharge than others - I went through years when I wore a pantyliner ever day) - message your med onc anyway. At least then you and they have a start date clearly written down and it might help for monitoring/follow up in the future.
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Thank you Salamandra for your answer! I did not detect any smell and I agree could be related to the antibiotics i took for the UTI but I don't recall having such thing in the past when I took antibiotics. I will call the GYN and have it checked one of the coming days.
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Hello ladies! Wow it feels like it's been a long time since I've chimed in, although really it's just been a couple weeks. Can you believe it's almost April?
I had my first post-treatment follow up appointments with my oncologist and radiologist. Thank goodness both went well. In fact I don't need to see the radiologist again, he was pretty amazed I was so well healed up. And my MO is good with me staying on the 10 mg dose for at least the next few months before I see him again as he knows I'm trying to push past those final 10 lbs. weight loss. So I'm going to just enjoy these next few months of no appointments, 10 mg tamoxifen which I am tolerating really well, and getting back to my normal routine.
Domino of course accompanied me to the hospital, here she is:
And now to quickly chime in on all the activity here although I'm way behind...
Salamandra - I'm good with either! There's a paleo / health thread that was pretty active until the ringleader took a break, maybe we can post to that one and revive that thread as there were already a few more followers? Or message too with our updates. I'm good with whichever you prefer, I think I will be better with the diet if we do this together! This is the paleo thread (those of us looking to be in shape and value nutrition but still love to eat meat): https://community.breastcancer.org/forum/58/topics/864910?page=58#idx_1730
And I'm so impressed with your ninja communication skills on the 10mg tamoxifen! I sometimes print studies and bring them into my appointments. Then they can't argue with the study when they are staring at it.
Ingerp / Purplecat / Salamandra - I've replaced coffee with tea. :-O Mostly because I used to have coffee with my sugar, and I've cut sugar now. So it's green tea with honey and lime!
HPFULL - I'm still on 10mg. My oncologist was OK with it for now. Still haven't decided if I'm going to go to 20mg or not.
Michelle_in_cornland - I'm glad you are still following along, hope you are doing well!
hapa and LPlibrarygirl and Dani - I would love to take credit for the clean house in my most recent pup pic before this, but that wasn't my place! It was my mother-in-law's home so credit to her on the cleanliness. If other pics that ARE my place look super clean, I am just taking clever angles LOL.
Notoday - there is a path a lot of us took that has helped most of us tolerate the SEs of tamoxifen better. Wait at least a month after your last treatment (whether that's chemo or rads) before you start, this lets your body recover. Then start at a lower dose and gradually work your way up to the 20 mg dose. Some of us (including me) have stayed on lower doses, partly because of new research that came out (which I posted here: https://community.breastcancer.org/forum/78/topics/870153?page=1)
Dani - congrats on losing 5 lbs.! While on the hormone therapy! Hurrah, that's so inspirational. Salamandra and I are trying to lose weight too, should we all do this together?
So it's a very small percentage but there are some potential SEs to the eyes with tamoxifen - check out this article: https://www.aao.org/eyenet/article/watch-ocular-effects-of-breast-cancer-drugs - I'm worried about it too and all my oncologist said was to get regular eye check-ups. I'm glad that you followed the path and found it was not related and will heal, whew!
purplecat - I take vitamin D every day, I started it during radiation because it's supposed to be good for your skin. I haven't stopped because I figure it's good for the body overall right? And I take it in yummy gummy form. Who knows if it was part of why I healed so well from rads or not, but doesn't hurt. Also, the emotions hit all of us and I can only imagine how the weight is heavier on you right now with your friend going through this again. We are here for you. Vent all you want to us.
hapa and jaboo - hopefully the strength training can help with osteoporosis. Maybe yoga too?
Badluck / veeder14 / bennybear - Tamoxifen supposedly has one positive SE vs. an AI in that its supposed to strengthen bones, if that's an option.
rljes - I've been on the 10mg dose of tamoxifen and have been just fine. Occasional hot flashes only in the hours right after I take it, more vivid dreams that I remember which is not a bad thing, and really that's it so far. I was super worried before I started too. Think of it this way - you don't know how you're going to react, just have to try it, and if there are intolerable SEs you stop. That simple.
applejuice - I've heard vaginal discharge sometimes happens on tamoxifen as the body adjusts.
egregious, greenharbor, suztracy, mnsotamom, carebearzzz - waving hi and thanks for sharing your stories! carebearzzz - I'm like you, a couple months in now and no major SEs. I think I can do this at the 10 mg dose. Still contemplating whether to go to the 20 mg dose or not.
As I'm contemplating, Tucker sits and looks at me like this:
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Applejuice-
Yes! I have a lot of discharge happening that is most definitely related to the Tamoxifen. I also have messed up periods since starting it, so I just wear a stupid liner all the time now. Annoying for sure but not intolerable.
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I am still following along. Congrats on the eye issue Dani! For those with discharge, it is definitely not fun. I believe that the cervical canal gets overloaded with estrogen and secretes an oily // fluffy substance. If it is too fluffy, it moves into the yeast zone. I had this happen last year, during my pap smear. I was instructed to use the 3 day monostat, which works great. I have even tried a couple things to keep the discharge thinned out. Not sure if I am making progress.
Do the post menopausal readers on here understand that one good side effect of both Tamoxifen and Evista (sister drug for prevention in non invasive folks) help build bones?
exerpt from NIH*******************
The selective estrogen receptor modulator tamoxifen has a deleterious effect on bone density in healthy pre-menopausal women (5). In contrast, tamoxifen acts as an estrogen agonist in the skeletons of postmenopausal women, despite its antiestrogenic effect in the breast. In postmenopausal women, tamoxifen increases lumbar spine bone mineral density (BMD) (6–8) and attenuates bone loss associated with chemotherapy-induced premature menopause (9). Use of tamoxifen is associated with decreases in markers of bone turnover (serum osteocalcin and urinary N-telopeptide [NTX]); moreover, the decline in NTX has been correlated with an increase in spine BMD after 12 months of treatment (10).
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It has been a rough winter, and I am so looking forward to sunshine, warmth and longer days!!!
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Pebbles - love your little Domino!!!! He is the cutest little guy I've ever seen! I know if my husband would agree with me that I need a fur baby, my emotions would be so much better. Dogs & cats are excellent therapy for humans. To bad we can't write them off as a dependent
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Thanks Badluck! Totally agree our pups are our little ones and therapy too. Domino came with me every day to radiation treatment and I think she helped me have a positive attitude throughout.
One more pic for the weekend. Hope everyone is doing well and having some well deserved relaxation this Sunday!
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I have the Tamoxifen discharge too. Sounds like a condition 😂 I haven’t had a period. Is any else having stopped periods from
Tamoxifen? Dani so
That your eye is getting better0 -
HPFULL-I haven't had a period since Chemo (June-Sept ‘18) I have been on Tamoxifen since Nov. still no period.
I am having discharge.
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So nice to see a Tucker & Domino picture! Thanks everyone for the good thoughts on my healing eye issue! So ready for warm weather here too! Did not appreciate the snowfall yesterday 😁.
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No period stoppage here. I'm 49 and things have been getting irregular for several months, so I thought tamoxifen might finish me off. I would have been OK with that. But as of yesterday, no such luck.
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HPFULL my period stopped right after the BMX surgery 8 weeks ago. I'm 48. Blood tests for estrogen level show I'm in menopause..
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I'm so glad someone brought up re our time of month (thx HPFULL!). No stopped period for me either (I'm 43). It definitely irregular. My usual cycle is 25 days and I was really hoping tamoxifen would extend that out. But then I got my period 20 days later. Now it's been 26 days and I have not gotten it yet, but prob will soon.
I really don't mind if tamoxifen will result in longer stretches between that time of month! I was a bit worried on the shorter cycle, but maybe that was a one off. It was perfectly normal when it came.
Dani and others - one more Domino and Tucker updatemaking Monday a bit more bearable (or is that dog-able?).
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I have to chuckle about the cycles, normally when I've had stressful things in life (like the death of a parent) I stop for a few months. So I thought when this call came about I thought oh I'll stop for a few months, but nope, just like clock work, in fact I'm normally 31 days and have been 28. I just started Tamoxifen two weeks ago and just had my cycle so we will see what the next few months bring. My MO said that my cycles will probably go a little haywire and at the point if I stop for 12 months then we will check to see if I'm actually in menopause or not.
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Hi ladies, I haven't posted for a while but have been reading your comments and following along. My last period was just after surgery (in November). Dr has advised that's it's too early to say if I'm in menopause - only time will tell (I'm 45). I've been taking tamoxifen for 2 months now and in the last 3 weeks I've had discharge - looks like it's a side effect. Hoping that it will sort itself out
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Thanks for all of your responses to the period question😊 So strange as I was so on schedule every month, even the month I started Tamoxifen. I don’t think I am in menopause... but who knows. I am 45 so maybe? I was supposed to start March 7th but no dice. I wouldn’t mind if I didn’t feel like I was going to start these past 3 weeks. I feel like a big bloated sausage that keeps getting bloatier and bloatier each day lol.0 -
Oh the puppers!
I kept my hormonal IUD, despite my doctor's advice to remove it because exogenous hormones. I don't get periods on it and I kept not having periods, so I don't really know what the impact of tamoxifen is on that.
Pebbles, I've been procrastinating but I'm ready to start our cancer diet 'game'! I think I'd rather do it over PM, or start a new thread.
Anybody else interested? Pebbles is dieting for a little more weight loss and I'm dieting for low acidity (got terrible heartburn/gerd from the tamoxifen).
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I’m interested! I’ve been procrastinating for months
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