Bottle o Tamoxifen
Comments
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Ladym:
I had nausea when I started T but cannot attribute the nausea I had to it because I was also on antibiotics.
No, pee issues though! I hope you get answers.
Jan
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I had my first REAL hotflash last night after being on Tamoxifen since June. Holy cow! I was in my car and suddenly felt like there was a blow torch on inside of my head then my back was hot and I had the A/C going full blast. I made it home, put an icepack on my neck and that helped cool me down and then just as fast I was freezing. It took me the rest of the night, a hot shower and a change of clothes to warm back up. Went to bed with no trouble but woke up at 4AM freezing again. I must have had a hot flash in my sleep and had sweat through my PJs and sheets and was now damp and cold. Again.
I had no idea that a hot flash was all that. I thought that when I felt a little warm or my cheeks felt flushed that was it. Wrong! Also my period is late for the first time ever. Coincidence? I think not!
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ladym13, your nausea and fatigue sounds like a couple of bouts I had in the first 3 months being on tamox. For lengths of about 3-4 days I was super tired, esp in the eve, and for part of the time I was really nauseated, plus stomach and headaches. Both times, I got my period the next week, so after the fact I figured it was the tamox + my hormonal cycle working itself out. My onc had little to say about it, although his NP made me take a pregnancy test, just in case. (it was neg) Luckily after ~3 months it stopped happening. I hope it does for you too. Funny you mention pee too...I didn't/don't notice it smelling different but I feel like I need to pee more often, sometimes much more often. Definitely started post-tamox. Annoying but not life-changing. The onc had little to say about that either. I don't have infections. You haven't been eating asparagus frequently have you? That makes most people's pee smell funny.
CS
Perky, yikes that sounds like a doozy. Sorry you're having to go through it. My older sis describes similar symptoms (from menopause) and I'm not looking forward to that!
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cs7777- thanks...that makes me feel better, maybe it's just my body getting used to the T...
hahahaha, nope haven't been eating asparagus, I know that can do it too, but it's a different smell...lmao! I know the asparagus smell....too funny.
Hopefully I'll get my period and start feeling better.
Mo
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Mo, the funniest thing is that I don't ever recall noticing the asparagus effect until someone told me two years ago about it and now its just instantly noticeable to me after I eat asparagus, lol! the guy who told me was a prof at MIT and said that some people don't have a certain gene involved in its digestion and their pee doesn't smell funny. wierd facts about biology, haha!
ok that's totally off topic but what the hey....
hope you feel better soon.
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ladym ~ My pee smelled weird too for about a month. It has stopped because I've forgotten about it, until you just reminded me of it now.0
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ladym....just in case.....maybe have it checked out, especially if it doesn't go away....I mean if your pee smells different....Usually the side effects I had, stick around for a couple weeks, then straighten out......Just don't want you to think something is "normal' if it isn't.....
And asparagus? I KNOW! Ha!
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Good point chevyboy and I totally agree. About people checking their symptoms with their own docs, regardless of whether others of us have similar symptoms, that is.
happy Friday all!
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Hi Ladies!
I've been on T now since April with only a short break when I had my TE surgery in Sept. All seems ok - no real side effects except for the occasional leg cramp but those are few and far between. I have a friend who's been on for almost 4 years now and she doesn't have any side effects. I say just give it some time - the night sweats didn't last long for me and everything else seemed to sort itself out once I got "healthier". That is once I got over the sinus infection, stress, and past the chemo poisoning.
JennyB - my onc put me on the twice yearly Zometa right after I finished chemo but he didn't order any bone density tests. He simply said "this will help" and I said "why not!". I've had 2 infusions so far and not noticed any side effects from it.
Marie
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Mo, I gotta tell ya, the first thing I thought after reading your post was "Uh-oh, are you pregnant?!" Any chance? Might just pick up a test for the heck of it...wouldn't that be a doozy!!
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I've noticed kinda weird-smelling pee too!
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Hmmm... no pee smells here that I have noticed, except when I eat ASPARAGUS. Oh my. I have had my third consecutive period on tamoxifen ~ since chemopause. SO I seem to be regular now. Hot flashes left when I first got it, they are back again just not as intense. Mostly in the middle of the night and wake me from sleeping. Oh well. Saw my oncologist for my 6 month check up. All is good, tumor markers were fine so WOO hoo. I again asked about the tamoxifen metabolizing test. She said no she does not use it. It is still not standard practice, and results are inconclusive in her opinion. So I trust and her so I will swallow my white pill and hope it does it's job. (my dr's are at Sloan Kettering)
Have a good day girls.
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Hey Ladies -- Guess I'll weigh in on the smelly urine. What a delightful thot
I did notice something strange during Chemo and then off and on since, only less intense. So, maybe it's just residual from chemo - that wouldn't surprise me. I had my teeth cleaned and checked the other day and the dentist said they looked pretty good for having gone thru tx but that I need to check them again in 3 months as there are lingering effects for several months. I'm doing well on the big T so far. No serous issues. Occasional headaches, a bit of trouble sleeping as much as I'd like. I think I'm an unusual one in that I take mine at night. I noticed it made me groggy during the day. I don't think that is typical. Energy level coming back, still tire easily and want to do more than I really can. Still a bit hungry - just not as much, maybe my walking has helped that. Weight hasn't changed yet, still would like to loss a few pounds. Most of it is settling around the middle - YUK!!!
I had a bone density test this week and will go for a mammogram in December. Makes me a bit nervous but I just think - hey, gotta live in the present now, things have changed. It's been a nice Autum in East Tennessee and a lingering one. Since I missed summer I'm really enjoying this season.
Oh, almost forgot to ask -- Has anyone had problems with taste or mouth issues of a kind, a slight burning of the tongue? I had trouble with this during Chemo. It's not as severe as it was then but still a problem. The dentist thinks it's nerve damage and that it may take up to a year to heal. Of course it may never get better. It's irritating. I also read somewhere where this can be a symptom of menopause. Isn't that strange?
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Oh - JustmeAlicia, Congrats!!!!! on your check up and tumor marker check.
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ECT ~ Glad you are enjoying the Autumn. It really is a beautiful season ~ Glad you mentioned the dentist. I am overdue......... I just find myself avoiding any additional trips to any dr of any sort. I never had that burning tongue. Did have the metal taste in my mouth during chemo though. I am hoping your December tests go off without a hitch and that all is good !
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Hey Mel....Yeah that's exactly what I thought too, that's why I thought I'd better put my mind at rest and check if they could possibly be symptoms from the T.
I'm gonna wait to see if I get my period on Tuesday (they have been regular since returning after chemo) and if I don't get it, I'll have a mental breakdown...LMAO!!! and then go get a test...
Mo
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To all the Tmox Gals ~ I'm sending out to you all the happy and healing vibes I carried home with me yesterday, from the closing ceremony at the AZ Susan G Komen walk. Unbelievably uplifting, joyful and awesome experience. I sat next to a gal just finishing chemo and terrified of starting Tmox, because she is premenopausal. We were able to talk and I could alleviate some of her fears, she said she was so glad to be able to talk to somebody with experience. I gave her my Naturopathic Oncologist's name and told her she'd help her get through any of the SEs, that it is totally doable. I'd felt the same way before I started. I think there is WAY too much negative talk out there.0
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Wondering if anyone is having trouble with their eye sight since starting Tamoxifen. I thought I remember reading something about that earlier in the year. I have been on tamoxifen since May and my eyes have really worsen since. Hope all is well with all of you strong gals out there.
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Hey phxsunshine, thanks for the good vibes! We're having a glorious day here in no. California and perhaps some of it comes from you. : )
Irishmom, no I'm not having any eyesight issues. The one I recall hearing about was increased rates of cataracts in the very long run (like 20 yrs down the road), so that isn't something that you ought to be seeing now. Whether tamox might have other sight issues I'm just not aware, perhaps someone else is. Or check with Dr. Google.
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ECT- I am two months post chemo and a month and a half on Tamox. My mouth has been weird for a long time. I have burning on my tongue and gums and some foods still don't taste right. I haven't looked into it from a medical stand point. It is getting better. But very slowly. The nerve damage idea is interesting. I also have some lingering neuropathy which is also related to chemo.
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No eye changes here.....just getting older vision issues....bi-focals.........night driving harder.....getting older is just hard. I'd love to blame everything on Tamox but just can't.
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Has anyone experienced leg cramping? I have been on tamoxifen for about 1 1/2 years and notice severe cramping in my calves only when I run. Also, notice my vision getting worse, thinning hair and of course, hot flashes. I have also wondered about the strange smelling urine too!
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My naturopath suggested a banana a day for leg cramps. That did the trick for me. He also suggested pickle juice if the banana didn't work. I read about pickle juice in my local paper recently too so perhaps it's worth trying.
Does anyone know when you might be told that you are cancer free? Is it after a mammogram or a certain period of time after surgery? Thanks!
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Morning Gals! GreenLibrarian, my Primary Care told me that "I was cancer free" when I just saw her...because I asked her the same question. I'll ask the Radiologist when I see her today, and it's probably the last time that I'll go to her! It has been a year this month, that the mammogram found the tumor! I think "cancer free" means it hasn't come back as far as they can tell, anywhere. Mammograms are our greatest weapon I think..... And if you gals had chemo, or radiation, THAT also is about the best we can do! And the T pill.....
I think the leg cramps DO get better after awhile...like maybe a couple months...This IS the thread for "leg cramps"....
Man, I tried soap between the sheets, bananas, & that one vitamin/mineral, ???? I forget the name...but they got better after awhile, ANYway.0 -
Congratulations Chevyboy!
Glad to hear you are cancer free! You must have been so thrilled when you got the news.I do wish there was something besides the mammogram though to detect cancer...but gotta do it.
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WAY-TO-GO Chevyboy! I was wondering what the docs would say if at the end of the year you had a clean mammo and secretly hoping it would be "your free!" And I agree, it just probably means; best case, there's nothing we can find and by God's grace wer'e saying your 'free' of the wicked thing.
I too, wish there were more than the mammogram to test for recurrence. I discussed the MRI/CAT/even PET scan possibilities with my doctors - they don't think they are the best test for BC unless you first show on the mammogram and ultrasound. I know some doctors so some of these scans routinely though.
Also, this may be something everyone knows already, but if you wake with a leg cramp instead of extending your toes (pointing is the typical response) extend your heal. It helps, sometimes. I don't really have leg cramps very often so I'm not sure this would help someone with a bad case of it.
JFV - I'm so glad to find someone else with this side effect. I talked to my Rad oncologist about my 'buning tongue' issues yesterday and he agreeded with my dentist that it was nerve damage. He thot it should get better and the best thing was to avoid anything with acidity. I like orange juice, wine and coffee, what's a woman to do? I may have to go to a straw. LOL Can you imagine wine thru a straw? Anyway, I HATE THIS SE!!!!!!
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Hadley, I don't really know, but it sounds like some sort of nerve twitch! If you have it for very long, ask your Doctor....And it could BE your ovary....Maybe you could try & Google it.... something like "nerve twitch in ovary"......Have you tried that? I don't think there is anything else in there to do that! But ask your Doc, if it doesn't let up! Sorry I can't help you more!
And ECT! Wine through a straw is better than no wine at all!
I also heard that pineapple juice & apple juice are less acidic! Your burning tongue should get back to normal, hopefully, pretty soon! 0 -
Hadley, I haven't heard of htat one, sorry. I hope you're able to figure it out.
As for other screening tests for further BC, ECT, there was an interesting article in the NYTimes today about a recent study of using MRI for screening of high risk women in addition to mammograms. They found that for BRCA+ women and women with a family history of BC, having yearly MRIs along with their mammograms increased the survival rate after 6 years from something like 74% to 93%. This doesn't necessarily translate to all women, but it demonstrates that under certain circumstances the MRI is helping catch BCs early when they are still treatable. They did mention the problem with false positives though too, which MRIs are notorious for. Anyway, you can read the whole article here: http://www.nytimes.com/2010/11/16/health/16cancer.html?_r=1
Interestingly I'm still being referred for follow-up MRIs on my non-BC breast and my thought about it is "man, if they find something, I just can't start this whole thing again..." But my logical side understands the benefit of finding something that might occur early and this study gives me a little more faith that it the test is worthwhile.
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My onco and bs and primary docs all won't say "cancer free" they just say NED right now. I guess I can't ask for more than that right now.
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I don't think there's much 'negative' talk about BC. We all state what our s/e's are, and that helps others with similar ones. Eyes were fine on Tamoxifen (3 1/2 years), but have changed significantly on Aromasin (eye exam end of month). Mouth taste was horrible during chemo and just after...but not on tamoxifen. Yes also to NED, not 'cancer-free' is what I get also. In fact, my oncologist says he won't say I'm in remission until 10 years after chemo/rads ended (Feb. 2007). I see his point, and don't take it negatively. We all do what we feel is best for US. Tamoxifen is a wonderful drug, and I'm wishing I was back on it, lol...instead of the AI now that I'm post-menopausal (pre-menopausal until taxol, hence the tamoxifen). I'm 51 years old. EVERYONE experiences s/e's very very differently, none of us have the same body~!!
To all of us who are fighting the good fight...juli
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