Bottle o Tamoxifen
Comments
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Chevyboy - yes that makes perfect sense to me about the fish oil thinning the blood, which I also take. My GP suggested either cutting my asprin dosage in half or taking it every second day until I get the results.0
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Thanks Rgiuff,
I agree that sometimes it takes a while to connect things with the Tamoxifen. I am afraid that the sx are so mild that no one will find anything wrong with it. It does not feel critical, but more annoying. I'll keep you posted.
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Hi ladies, now that I've finished with my 33 rads, my med onco immediately got me back on my Tamox. I was on it for 30 days before being told to stop it while getting rad tx. So I started it again on Dec 1st (1 pill) in the evening. My regimen is twice a day. But problem is I had to go to the urgent care this afternoon (Dec 4th) due to some itchy rash on my ears, cheeks, breast area and growing towards stomach and left arm. It was pretty hard to diagnose and it could be (1) something I ate on Tuesday night. (2) a viral thing, because DH was under the weather (3) radiation dermatitis. Believe it or not, on my 2nd and 3rd day of taking Tamox, I already noticed a tiny pain prick on my leg and my hip. Not a big jolt or anything, but it's noticeable, a quick little prick. I will continue to share notes with y'all.
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Hi there--I have been following this group for a little while as I am to start taking Tamoxifen on Dec 24th (nice xmas present). I start rads on January 4th. I noticed that some don't take it while on rads--my doc didn't seem to be concerned--Does anyone take Tamoxifen while on rads? Is there any SE? Just curious. Not looking forward to taking a pill everyday for 5 years.....
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Rachel, some start right after chemo, some wait until after rads. It just seems to depend on the onc. I think the only difference is that they might want to see whether s/e's are from Tamox or rads.
There can be quite a few s/e's but a lot of women have very few or mild s/e's so don't worry...just wait and see! It's a powerful and imporant drug in the fight against bc.
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rachel5738 - My doctor wanted me to start the tamox as soon as possible so I started it right before I started rads. There doesn't seem to be much consistancy between doctors in what they do related to your question. Good luck with your radiation. I used pure aloe vera gel and didn't have any real problems.
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mmmmm........just wondering..........anyone here using estriol cream (and I don't mean on your face - try the other end of your body !!) ? My onc gave me a rx for it because I am really dry (and strangely lacking sensation) in that area!! However, on the info leaflet it says that BC sufferers should not use it. Another thing is the dr said I should still use contraception and he was aware that we are using condoms because he also cautioned my husband about not coming in contact with the estriol but the info leaflet says not to use with condoms so has anyone any other suggestions that allow for contraception and my DH not making 'contact' with the cream.
Sorry if this is a bit too personal for some but I seem to be getting very mixed up info and I'm not sure what to do.
Incidently I posted here because I am on tamox since Aug 09 and my 'problem' is a se of tamox.
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anyone get facial blemishes from T. I'm 59 years old and post menopausal...what's up with the pimples?
Jan
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Ainm, Nothing is off limits, this is the right place for friendly support. I can help a little here- my DH is an OB/GYN and he had a conversation with my onc re: the creams. They both agreed that they prescribe it for some previous bc patients because they feel the amount of absorption is very minimal and the dryness s/e can really ruin your personal life! The comment on the leaflet is probably just a generalization.
Yes, it is a good idea to use birth control because many premenopausal women begin to have periods again and you don't want to get pregnant on these drugs! Obviously the pill is out of the question. I'm not sure how you can work your way around this... how are you supposed to not come in contact with the cream?! Sounds like you might want to have a talk with your own gyn. Maybe there's something I'm not thinking of- I haven't had to think about birth control for many years- DH is snipped!
Sorry about the crappy Tamox s/e. All the best to you!
P.S. There are a lot of women on the boards who've had success with non-estrogen lubes but I'm assuming you tried those before starting the Rx.
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Jan, I look like a teenager! I'm 39 and pre-menopausal but I think this might be chemo-induced and something to do with the ovaries/estrogen firing back up in my system. I think it started before I started Tamox, but I'm not sure. It's definitely hanging around- it's been a few months now. I'm really tired of it! Acne is a s/e of menopause... go figure! I thought those days were looooong over.0
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Morning Ainm....If you have a lot of concerns, can you just try something like vaseline or even that gel stuff? I know those don't have any side effects, & that's all they used to use in the "old days!"
Also, about our sleeping problems....I've read a lot about "Ambien" causing a LOT of unwanted side-effects.....Women talk about "having conversations & not remembering a word of what they said.." I read them on this forum, on a different thread.
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I am on three meds and have never had side-effects. I tried Tamoxifen for a week, felt like crap and stopped. Tried it again and made it two weeks. Same thing. I saw my doctor last week and she said to give it a month and the side-effects should begin to subside. I'm not sure I can last a month on this crazy stuff. I am not one to look for side-effects and I've been lucky on all other meds - but this is kicking my ass. Guess I'll try again....
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Ainm, I don't have any particular advice for you, other than to say my gyn said the same as yours about using estrogen creme if I needed it (so far not, thankfully). There are several threads on bco dedicated to sexual problems of BC and hormonal therapies that you could check out. One is in the Moving Beyond Cancer forum and is called "I WANT MY MOJO BACK". Another is in the Hormonal Therapy forum and is called "Another discussion about MOJO- need advice". I read a little in both of these and see tons of detailed info traded back and forth so you might take a look there.
Anniebear - sorry to hear tamox is sending you over the deep end. It is true that a number of women here (including me) said their SE's tapered off significantly after some time, typically a few months. But not everyone. Can you be more specific about what your SEs are as then women here might note whether those specific types of SEs tended to resolve for them or not. Hugs to you!
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Anniebear-sorry to hear about Tamoxifen. I am 2/3's done w/radiation -similar diagnosis to you and also supposed to start T. upon completion of the rads. I am pretty scared of the side effects and I'm not even considering the less common serious effects. I'm actually pretty worried about quality of life since statistics indicate this additional treatment is primarily about the possibility of preventing trouble in my other breast. I don't know anybody who has not had trouble with this... Five years seems like an awfully long time to "gut it out?"
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Clare:
I'm finishing up my 2nd RX of Tamox and have had some subtle se's. Nothing major so far. I get a little touchy, some hot flashes but not too bad, some skin blemishes (slight).
I was post menopause when starting so I don't know if that makes a difference.
Just report and se's to your dr if they are bothersome and don't worry about it.
Jan
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Aimn, I had the same problem with perimenopause, the dimming down of sensations, and then my first several months on tamox, I became practically numb down there, I mean nothing helped. It got so bad, I quit the tamox for a month and a half. Strangely enough when I started back up on it, things had started improving in that area. Now it seems to wax and wane periodically. I've gotten a prescription for testosterone gel to help with the sensation and it works well. My Onc and Gyn both agreed that this was perfectly OK to use.
As for the estriol cream, are you using it everyday? If not, perhaps the days you're not applying it, it might be safer to come into contact with that area. Also curious to know if it works for the sensation and dryness?
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Greetings all!
I'm just at the end of my fourth year on Tamoxifen (stage 1, ER/PR+, lumpectomy, rads) and seem to feel like the side effects are worse now than when I started. Anyone else feel the same?
At the start I had the occasional hot flash. Since then, over the years I had a benign ovarian cyst removed (it was a biggie), had a D&C earlier this year to remove benign uterine polyps (and now have much lighter periods...yay!), but this year I have had a few vaginal infections, nothing very painful but more a pain in the you know what
My hot flashes have gotten worse and my periods are sometimes irregular. Gyn said given my age (47) and the fact he saw nothing abnormal at my last exam in spring, I could be going into perimenopause and to track periods but if no pain or heavy flow, its likely perimenopause. I think the Tamox could be doing it - a fellow survivor said a friend of hers had worse SE later in her course of Tamox. I am now waking at night too....sometimes with a hot flash or just warm.I have had other stressors so that could be causing the sleep disruption, which thankfully is not too bad or making me very sleepy. I guess I just feel like hey, it could be Tamoxifen causing these problems or perimenopause. Or both!
Won't know for sure for another year when the five years w Tamox is up.Anyone else experience anything similar? My gyn was not overly concerned about the vaginal issues or irregular periods, barring any other serious symptoms, which thankfully I don't have. And my oncologist says unless I have more than benign SE, she wants me to stay the course. She did say I would probably feel better once I'm off it (physically, yes but since I am not menopausal I will have no meds to take after the five years which brings its own concerns to me..........such is the life of a survivor LOL
Hope all you gals are staying warm and enduring this course of treatment well!
Pat
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It seems to me that most people that haven't been here themselves or lost a loved one to the "good kind" think once we have finished chemo and/or rads we are "cured", survivors.
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clare2, try not to be too worried before you even start. while I don't want to minimize the se's some women get, please know that many of us do just fine on tamoxifen too. there's a perfectly good chance you'll be in the latter group (do just fine on it) so I hope you can hold that idea as a significant possibility too, and it'll make it a lot easier to start, assuming you choose to take it. best to you!!
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chabba, so true. I can't tell you how many people tell me I'm now "done" with breast cancer! Yeah, right. Never mind the fact that just yesterday I had a Herceptin infusion, I still have a port in my chest (and will until next February, because I'll be on Herceptin until then) and endless scans and hormone therapy ahead of me. That's why I'm here among sister who "get it!"
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So bloated from Tamoxifen!!!
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Juli, How are you doing? Have you found anything out about you eyes? Haven't seen you on in a while.
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rgiuff-I was just going to post a question and read your comment- I have had no side effects on the T that I notice, but I do notice the same issues you commented on. The desire is there but the feeling is not matching. It is becoming frustrating. I will see my GYN in Jan and I will ask her about the Testosterone cream. I hope that helps. I have been on the T since July. Does it get better in that area or do we chalk it up to shutting down our estrogen levels?
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Been a while since I have been on. I have absolutely no SE and it makes me wonder if it is working. I know I read somewhere that everyone is different but the only true SE I have is constipation and I take Colace for that. How many women out here have absolutely nothing? June
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Hello all. I have something going on that I never expected at all. I've been on Tamox for 4 1/2 months now and was put into chemopause in April. Now the weird thing is....I'm actually starting to get a sex drive again! What?? I'm shocked - happy but shocked. The drive isn't as strong as before, but it's most defitely there. Has this happened to anyone else? Sorry if this is TMI...
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Hi June2268 I have been on Tamox since the end of Feb 2010. I really have no side effects from the medication either with the exception of it causing me to have an increased appetite (I guess that's what it is) and it has made my constipation problem worse than it was. No hot flashes but then again I have been menopausal for 8 yrs. I had a total hysterectomy 8 1/2 yrs ago and had the worst hot flashes a little over 2 yrs ago that ended just before I was dx with BC. So far so good with no return of the bad flashing. Sex drive is another thing... it just doesn't exist. Wish it did! Haven't had much of one for 8 + yrs but with the Tamox it is even worse. The docs really haven't suggested anything.
Renee
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Sweetie, I know a lot of it has to do with going through menopause because the sensation problem started when I started getting all the night sweats, hot flashes, and skipped periods of perimenopause. However within a few months of first starting tamoxifen, I also noticed what I liked to call a disconnection, a numbness, like the circuitry "down there" was no longer working at all. I'm not currently having that problem anymore though, although still have occasional problems with lessened sensations, but the testosterone helps with that.
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I have lost 20 pounds on it since I started in August.I am nauseous from it almost daily. Skin looks like crap, I have no patience for BS, but it is better than dying.
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I used to read about how women were having problems down there and I thought I was so lucky for the first 5 months as my sex drive was like it always was. Now it is horrible!!! Nothing, like someone said NUMBNESS completely. I don't feel a darn thing, but I haven't gone to my OB to see what they can do. Right now I am fighting a month long cold from hell with breathing problems and they say my lungs are clear when they listen and I scored a perfect 100 on the Oxygen level. So who knows. I am mid way through my 2nd antibiotic and if I don't get better soon I am off for a chest x-ray. Could this be from the radiation which ended back at the end of April? I hate that there always seems to be a new worry.......I am so glad that we can all come to this site and feel completely normal......June
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nmi: Thank you for asking. I see a retina specialist the 13th, will know more after that visit. Having gone thru tamoxifen for 3 1/2 years, then switching to Aromasin (due to being premenopausal, but smacked into menopause first day of taxol, Oct. 2006), we have found significant changes in my eyes/retinas. EXtreme sensitivity to the sun especially (migraines daily anyway, so sensitivity has been there forever anyway, but increased just this year more) and always having to blink to 'clear' my eyes (just this year and not corrected with new prescription lenses, and yes, I protect my eyes with the strongest UV sunglasses)
The *RARE* side effects of tamoxifen one simply could never read all of them. We agree that this drug is a lifesaver, and is needed. 3 1/2 years for me, 7 more years now on Aromasin. I appreciate you asking nmi~! THANK YOU...juli
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