Bottle o Tamoxifen
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ncollett -- I had hot flashes and night sweats prior to tamoxifen. I have been on tamoxifen for 15 months now, and I go through periods of them being more frequent and less frequent. The tamoxifen didn't necessarily make them worse. I figure I'd be having them anyway as I'm going through menopause. The only differenc is that, had I not gotten breast cancer, I might be treating them with something like black cohosh (which I've read here that some oncologists say is ok, but mine says no ...).
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hi ladies, will be starting tamoxifen this weekend....with mixed feelings.
I have been having night sweats since I had my first chemo, still get them night or day ,also I have arthritis like condition in all my joints...and sometimes it takes me a minute or two to get going. My oncologist thinks I should be ok on tamoxifen ...since I have a lot of the side effects already from my body being forced into menopause like conditions. Has anyone else had the side effects pre tamoxifen ?
I have been reading your posts and getting great info....thank you.
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Hello Ladies,
I will be starting Tamoxifen next week. I already have hot flashes, sometimes bad, most times doable. I'm hoping this doesn't make them worse. I asked my MO about the Black Cohash and he said absolutely not because it's a plant based estrogen, and my estrogen was 99%, so he said it would be defeating the Tamoxifen. Also I was prescribed the Teva brand. Is there a better time to take this, morning/day/night? Any advise is greatly appreciated. Thanks and wish me luck.
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I posted this on another thread, but figured I'd ask here - has any one noticed an increase in peripheral neuropathy with Tamoxifen? I got a little bit of this during chemo and it was starting to get better (am 10 weeks PFC), but now after starting Tamoxifen about a week ago, I think it's actually getting worse. I also think I'm noticing desensitized nerves in other areas, similar to chemo. Also getting muscle aches, but that could be any number of things.
I looked up tamox + peripheral neuropathy but have only seen items on discussion boards, nothing on the actual drug pages. I'm wondering if I'm going to have to stop this drug.
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Looks like we are all in the same boat. Hopefully when I do start my Tamoxifen it wont be too bad.
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Nancybel I also have Teva and like it. Newest studies say it should be taken at bedtime so that our melatonin release is not inhibited.
http://www.sciencedaily.com/releases/2014/07/140725080408.htm although I've heard some ladies on here take it in the morning because it causes them insomnia, this was not the case for me fortunately.
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I haven't been here in forever but so grateful that it is still here...just had a second mammogram yesterday because last week's found a 9mm suspicious nodule close to my chest wall...breast cancer side...4 years...am praying in my way that I make it to 5 without a sighting....funny how I was becoming complacent and thinking life had finally returned to normal.....no pain, no lump felt...just like last time...just need a place to verbalize my fears same as last time...fingers crossed
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I'll have you in my thoughts and prayers. I have a question to ask you or the group. I had a unilateral mastectomy in March of 2013. I get a mammogram now but only on my right side (remaining breast). Did you have a mastectomy or lumpectomy. I'm just curious because I have heard that women who had had mastectomies sometimes the doctor will do a mammogram. I just wonder how I'll ever know if I got a lump behind my implant if they don't check it. Maybe since the breast is gone I don't have to worry but not sure.
Also, hope this doesn't sound dumb above. I'm finding the further cancer gets in the rear view mirror the less I remember about the whole thing.
Thanks,
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I asked that question this Monday when I had my mammogram, she said those with mastectomies have MRI's or cat scans..........
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Bethq, thank you for the information. I appreciate. I will try evening and if there's a problem with insomnia and I'll switch to mornings. I'm glad Teva has been good to you. Hopefully it will be to me too.
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I also take mine at night .The first month It was like I was on high alert.Every little thing would wake me up.Kind of like sleeping with one eye open.Then I started taking it around 8-830pm.If I take it after 9:15 then sometimes I have trouble sleeping.When I first started on it I would take it in the morning.Then about a month into it my boss noticed I was slowing down a lot.So I would take 1/2 in the morning and 1/2 at night.But I would forget to take the night time dose I did this for about 3 months.Then my eyelid was so itchy and red.I thought it was the Tamoxofin.Then in Dec I decided to go off.Well in March I decided I was not playing with my health anymore.And my eyelid didn't get better off of it.I decided to try strictly the Teva brand.It has worked out well so far.Once in a while a hot flash.
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If this is perimenopause that I'm going through, then this sucks! I've been having issues on and off since Jan. Been on Tamoxifen since Feb of last year. My biggest issue is the dizziness/lightheadedness! It's like I have to walk "carefully" cause I never know when I'll have an episode. Then sometimes it feels like someone is pressing down on my head. I saw an ENT who thinks this is all "just allergies" which I've never had before. I can go 2 or 3 weeks without a problem then have constant issues for a week straight. Last night I slept about 4 hours total because of night sweats. And the latest issue is feeling like my heart is slightly racing, then I burp and I feel ok for a few minutes. I'm not sure how much of this could be attributed to the Tamoxifen or if I'm perimenopausal despite my levels being normal. Or do I just go the typical BC survivor route and figure it's probably brain cancer?! You know how the mind can go to the dark places....
I just feel so "off" lately. Dizziness, brain fog, burping, heart palpitations, have to pee all the time, fatigue, bloating, achy joints.....It just goes on and on! I've told my oncologist who said allergies and sent me to ENT. ENT said probably allergies and here's some meds. OB/GYN says probably going into menopause but who knows. No one seems concerned so does that mean I shouldn't be concerned? Does anyone else have these symptoms and has it been attributed to their hormone therapy?
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lala1 - I feel your pain with the Tamoxifen and doctors. Ugh. Everyone just passes the buck, no one wants to help, everyone blames symptoms on something else. I get heart races, extreme fatigue, horribly achy hands, lower back ache, other achy joints, NO libido, insomnia, hot flashes from hell. I have only been on it since December. I refuse to add another med for side effects and docs can't seem to understand why this bothers me. Quality of life is definitely affected. I stopped taking it for two weeks for a medical procedure, and haven't started it back up yet. In the two weeks I have been off, my back ache has gone away, I can use my hands, I am sleeping better (though it takes a while to GET to sleep), and I am feeling a stirring of my libido. I feel human again. Now I am depressed because I don't want to start up again. I wish instead of spending research dollars on discovering we shouldn't use a night light, they would develop a drug that let's us still feel human and female. Rant over. Hugs lala! This all sucks - I am having a bad pity party day for myself.
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It is very difficult to know what exactly is causing certain symptoms. I have been taking Tamoxifen for 3.5 years now. In the last year I started to feel some pain in my right wrist, but then it would go away. I just blamed on Tamoxifen and computer use. My oncologist, who has basically become my primary doctor, noticed my blood levels were low. I was not worried because I feel great.
She ordered blood samples and had them analyzed for every disease under the sun. The test showed positive for ANA (antinuclear antibodies). She referred me to the rheumatologist, who conducted more tests. It turns out I have Rheumatoid Arthritis. It is very early stage and detected in the blood, no damage to joints yet. I am extremely grateful for my oncologist. Now, I know why, she was so highly recommended.
It is important to find a doctor that pays attention to your overall health. Some doctors just seem too busy to listen and take us seriously.
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I started Tamoxifen at the end of June. For last couple of weeks have been experiencing a lot of hot flashes, ..sheesh I can't remember what I was going to type - - oh yeah - reduced cognitive function, a little weight loss (SO not normal), anxiety etc. Had Onc appointment Friday and was thinking these were side effects of Tamoxifen. Dr. decided to run thyroid - TSH blood test in addition to regular stuff. Sure enough TSH VERY low, and that could possibly be responsible for some if not all of the SE's I have been attributing to Tamoxifen. Thought I'd mention it and if having side effects be sure to check thyroid levels. Any one else going through this - with known thyroid issue? Could it be drug interaction? Guess I will find out but my endo is no longer practicing so now I get to go find yet ANOTHER doctor.
Any thoughts appreciated. 0 -
I, too, low thyroid, I am thinking the thyroid issues have something to do with us getting BC. I asked my PCP about iodine, as I have read the connection it has to the thyroid. He would not test for iodine level. I am on levithyroid, but still tired:(.
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Interesting about the thyroid, I need to ask about that. I just had my first physical since completing treatment last summer and my triglycerides are over 800! I of course googled it and apparently tamoxifen can cause high triglycerides. Has anyone else experienced this?
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I already have a high ANA and hypothyroid and hot flashes without start Tamoxifen yet. Will see what MO wants to do on Wed. Have to say I am a little nervous about going on this but I know I really dont have a choice.
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melody46--- I had by cholesterol tested at my MX, about 3 months later and then again about 8 months after that. My triglycerides were 62 the first test, 62 again for the second and 114 for the third. Tamoxifen causing them to rise would make sense because I started the Tamoxifen just after the second test. So if that's the case, it doubled mine. That was almost a year ago so I'd hate to see what they look like now!!
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Sandee! How great to see you, but sorry about what brought you here again. I hope you've heard some good news by now and I'm sorry I didn't see this sooner - the anxiety is the worst! Are they planning to do a biopsy or more scans first?
Just stopping by to see if any long-term users are having any skin issues. I've been getting weird, itchy bumps mostly on my abdomen and chest. Then they turn flat and rough and become about the size of a dime. And it looks like they hang around about a month - just lovely. I saw my MO the other day and I was worried because a couple of them are on my bad breast but she wasn't worried. She said Tamoxifen (and the AIs) can break down your skin because of the estrogen depletion. Then she gave me some serious corticosteroid cream with a million warnings. She wouldn't give me anything systemic (which is what I wanted rather than tending to these bumps one at a time) because she said that would be hard on the liver. Sigh... always with the liver!
I've got 14 months to go and that will be 5 years and that's it for me! I just hope I can last 14 more months.
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Well, here's some good news for coffee drinkers! It seems that 2 cups+ per day of coffee in conjunction with Tamoxifen may help prevent breast cancer returning:
http://www.sciencedaily.com/releases/2013/04/130425091345.htm
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bethq - does it say in that article about melatonin and tamoxifen to take the tamoxifen at night to make it more effective? I could have missed something when I read it, for sure...
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Hi All, I just started Tamoxifen on Wednesday and I guess I will see what side effects I may get as I am 59. I had just 1 period after I turned 48 so I am very postmenopausal. I never had much in the way of serious hot flashes or night sweats during what i think was maybe quite an early menopause. My MO who is at Dana Farber decided on 2 years Tamoxifen followed by 3 years on an AI as I have very thin hair already and also thinks I will be less likely to have joint and bone issues doing it this way. I was not expecting this combination but will see how it goes! I asked what time to take it as I have insomnia and was told it did not matter as it builds up in your system over a period of weeks. I also asked about the interaction listed with my OTC sleep aid and was told it was ok and that there are some things listed that I don't really need to worry about. Interesting I thought .
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Does 1 Medium Dunkin Donuts Latte Lite count as 2 or more cups?
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I like your thinking Izzsymom, my vise I have to have my morning coffee. Usually about 2 cups.
Didn't know about the triglycerides. Will have to talk to my Dr. about that. I know that my blood glucose has risen, but they tell me it's not the Tamox, yeah ok.
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Does anyone know if these new studies showing that coffee has a beneficial effect on us Tamoxifen users includes decaf coffee? Thanks to the lovely Tamoxifen I find that I have to pee alot more these days and I was thinking of switching to decaf. Now I may have to stick with regular and not stray too far from the bathroom!!
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Lala, Now that is interesting about the Tamox making you pee a lot. I found something that not many people know about. There are a couple of mentions on the alt. threads, phytoceramides. I did some research and then started taking one little pill a day after rads finished as I expected to go on an AI. They are supposed to really help with keeping the skin moisturized (anti wrinkles). Yep I am afraid Dr. OZ talked about them as an anti aging product. I could not find anything bad about them on line. Well, I was peeing so much (pre Tamox rx) and I don't normally. My skin, all over, did feel a bit different almost immediately and a few spots broke out on my face although it could have been the new foundation I bought. I always had blemishes until way past menopause. I think they cause water retention as I put on a few pounds quickly and felt a bit bloated even though I was exercising, GRR! Now I am thinking I may stop if the tamox does the same. I went out last week and hoped I would find a restroom easily if I needed one but was ok Phew!
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Ladies,
If you are just starting Tamoxifen, don't look for SE's just pray you are one without them. I am hypersensitive to most drugs and to this one I am not so far. I am on month 3 and have NO SE's at all. If any I would say weight loss, but that is probably because I'm exercising much more. I'm thin and don't need to lose weight though. Of all my treatment Tamoxifen was what I was most scared of, and in the end it has been the easiest.
I thought initially I had a few "warm" flushes at night, but I think I was just looking for something. I also had some insomnia, but I knew it was because my mind was not shutting off. Dr told me to try Benadryl and it did the trick. It is "as needed".
Many have SE's and horrible ones, but there are some of us that don't have any or very manageable ones. I'm still new to this and it could change, but Dr said usually SE's start and then taper.0 -
Oh wow I thought Benadryl was one of the medications we couldn't take with Tamoxifen.
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bethq,
Not all Dr's agree on this, and there are quite a few Dr's that don't see an issue when not used regularly. "When used regularly or continuously for extended periods, diphenhydramine may reduce the effectiveness of tamoxifen in the treatment of breast cancer."It is on the list, but my Dr. an MDA Dr. suggested this and would much rather I take that when needed then a RX sleep aide or Xanax (anything that is addictive). And really I needed this for about a week and then here and there.
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