Bottle 'o Tamoxifen
Comments
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I agree- these hot flashes. Oy. I am NOT looking forward to summer here in Texas. 4 fans ready to blow. Too much? LOL
Runor- egad....too much butter? That's just wrong. Damn Tamoxifen.
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Runor---Damn! Why couldn't that have been my Tamoxifen SE?! I now CRAVE butter....and salt...and sugar...and donuts....and everything else that's bad for you. But really Capecodgirl? Bacon? Sheer blasphemy to hope bacon is next!
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Runor: thanks for another post that, onceagain, actually made me LOL! Your research and humour are much appreciated.
On SEs, I have had hot flashes/night sweats and cold spells in my first month on the big T. But the hot flashes are not even close to being as bad as those I had when going through menopause. Plus I have vivid dreams that others have reported, but I think are likely caused by my disrupted and light sleep. I am content thinking that me and the T are kicking cancer in the butt!
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I know that some of the deal of T is that it is crashing me into menopause instead of being let down slowly, so a lot of the SEs are things that would have likely crept up on me eventually anyway. But I am having a hard time with feeling as if I have the flu all the time -- just one big sweaty shivering aching mess.
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I just found this thread today but I am happy to recognize so many names! I started Tamoxifen 7 days ago and so far, so good. I seem to be super thirsty all the time despite being a good water drinker. Sleep is not a problem yet, but I did have a dream where I had to rescue my DH from a bad blond rockstar neighbor who was trying to kill us...oh yea, that must be the big T! I am having dull headaches and a dull pain in my left side too but no other GI issues. I have become so much more aware of my own body and sensations since this whole BC thing began - I never really noticed anything much before. I researched like crazy for each stage of BC treatment ... until this one. For some reason, I am terrified of Tamoxifen and medically induced menopause (that's what this is, right?), but I guess it's time to put on my big girl panties, join this group, educate myself, and read up on it. My MO told me that he thinks my periods will cease in 3 or 4 months, and he blew off most of the other SE's except told me to call him if I felt like "killing myself or anyone else". Gee wiz, what am I putting in my body? Thanks in advance for all I will learn from you.
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DownNotOut, I don't know that tamoxifen puts us in menopause. It's a good question. Technically our bodies are still producing the estrogen they used to produce. It's just that many of our cells are blocked from getting and utilizing that estrogen. True menopause is when our bodies, on their own, have a serious dip in estrogen production. I think our situation is that this is not TRUE menopause, but sure as heck feels like it.
My onc also said that tamoxifen would not stop my periods. Boy was he wrong! I have not had a period since I started back in August 2017. Up til then, while they were not on the nose time wise, they were always there. Now? Nothing. Not even a dribble.
About the dull pain in your left side, I noticed that constipation was an early problem with tamoxifen and it's possible that might cause some side/gut aches. It did resolve after a while but now and then I think gee, I ought to increase my prune intake. But I DO know what you mean about being hyper-vigilant and slightly panicked about every little twinge and ache. An unfortunate side effect of cancer: paranoia.
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Hi DownNotOut,
I had a relative who took Tamoxifen for 3 months and was terribly depressed the whole time and became suicidal, so the medication was stopped. After a couple of weeks she was back to her old self. So I guess depression and self harm are side effects.
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I don't know about T causing depression. I do know that the SE's are making me more depressed!
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Lack of good sleep from hot flashes every night would cause anyone depression!
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Hey Everyone, has anyone experienced a "lump in the throat" feeling since starting tamoxifen? This started about a week ago and it's quite uncomfortable.
Cheryl
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I have similar muscle spasms in my toes, shoulder and feet. I have defiencies periodically in calcium, vitamin D & magnesium. I chew a couple of TUMs and if the cramps stop, I know my calcium is off. If that doesn't work I take extra magnesium. With my toes, I grab them and force them back to normal position. All are very painful. My hot flashes have eased off a bit, but my left ovary is trying to get my attention.I had a physical with my gynecologist and he has ordered an internal pelvic U/S as I have a history of ovarian cysts.
The fatigue can be overwhelming. I forgot to take my Tamoxifen Sunday night. I woke up Monday to the most beautiful morning. I decided to clean our porch. I got the hose, outdoor bleach, the hose, etc. and started cleaning off the floors, outdoor furniture, grill. I hadn't felt up to that chore in a year. It was wonderful.... all the pollen was gone. Just about 15 minutes before I was done, my DH came out and told me to stop. He said I looked like I was going to fall over. He was right, but it was wonderful feeling I could do a normal chore. I don't know if missing a pill gave me the energy or it was a fluke. Today, I could barely walk around the grocery store. Someone at the cancer Center told me the SE's of radiation were predictable and almost scheduled, where the side effects of hormone treatments were constantly changing and you never knew when they would start up. For me that has been true.
The scariest side effect has been dizziness. My MO told me to drink as much fluids as possible because it was a SE and I needed more fluids. Thanks to all for sharing.... it makes it easier knowing we're not alone in these SEs.
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Interesting notion of stealth SEs jumping out and catching you. There is such a collection of SEs to pick from! Mine have been pretty constant, but I am at the beginning of this, just 6 weeks in.
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There is NOTHING wrong with you. And have you heard of lightly salted chips...mmmmm yummy. Hang in Girl.
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The one SE of T that I wouldn’t mind having is stopping my period. Nope. More regular now than I ever was, but still having them. I’m 6 months in. If it was gonna stop them I think it would by now. They are lighter at least.
Sleep has not been my friend for the past 6 months and I attribute that to the great T. I used to sleep so well. Now I wake up every few hours. I miss getting real rest. I know the sleep pattern is why I stay so tired. I’ve tried melatonin as well as a few otc seep aids. Still wake up every few hours. I am hoping that after my exchange surgery tomorrow that the sleep I get from being under anesthesia lets me feel better rested.
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Hi Tarenee,
I totally understand what you mean about your periods being more regular then ever mine have been like that too since starting Tamoxifen.
Sending you good thoughts and a smooth recovery with your exchange surgery today. Enjoy the good sleep too.Please let us know how you are doing.
Hugs,
Sara
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I too have "enjoyed" the most regular periods I have had since the teens. One positive there.
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Hi everyone, I was wondering if anyone has had this SE from Tamoxifen. I have a headache on the back of my head on the right side at the back of my skull. I had it the first couple of weeks after I started and then it went away, but now it's back. Between that and the night sweats and lack of sleep, it's making me crazy! Sorry for all of you having to still deal with your periods, ugh.
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I would be very interested to know how some of us still get our period on tamox and others of us (me) have an abrupt and sudden end.
It would be easy to think that I was getting close to being menopausal and my periods were going to end anyway. But I had never had so much as a single hot flash, at 53, and no missed periods and no light periods. No. My periods were life controlling, soul destroying beasts that made me cower in my house for 6 days a month because nothing on the planet could deal with the carnage. They ruled my life! And then ...boop! ... gone.
The other thing that is really starting to worry me is my hair falling out. Not thinning, leaving. I used to have massively thick hair. Ridiculous. The other day I noticed something weird as I looked in the mirror, what is that, what is going on with my hair? And I realized there was light coming through it from behind. Light NEVER used to be able to pass through my hair. Now it shines right through the few strands that I have left. The tub drain, the bathroom floor and counter, all my clothes and most of our food is covered with my hair. I stand as far back from the stove as possible since I never stop shedding and try not to get any hair in the spaghetti. We are pretty causal about it, just pick it out and keep eating.
And all this on HALF a pill a day. What would happen to me if I took a full dose? I bet I'd explode.
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Runor, sorry to hear your hair problem, do you take biotin? I take a daily 1000 tab. Might help.
Lewhy, i have a headache daily. My MO is aware and told me to give it a few more months, if it gets worse she will address it. What ever the heck that means.
About the period thing. I am 44 and haven't had a period since feb 2017. When i started chemo. In Jan i had blood work and was told i am in menopause. The blood levels were comparable to a 65 or older. Wow ok. Don't miss it that's for sure.
I started talking Effexor for my hot flashes and night sweats. Seems to be helping some. I slept so good last couple nights. Yay no more cranky shellie!!! Lol
Hope you all have an amazing day
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Runor - I have been taking evening primrose oil for the last 10 months or so. It helps with my hormones, skin and hair. In that time, my hair recovered from chemo (I cold capped so I still had quite a bit but it was SO thin and a few bald areas) and now I have more hair than I have ever had before chemo. Not sure how it will react with Tamoxifen, though. I am not on T but I still think about it bc my MO brings it up at every appt. I take some other supplements to help make up for it. Just posting here today in case Evening Primrose Oil might help you with your hair. I take 1000mg 3 times a day.
Someone mentioned Biotin - that also is supposed to be helpful. I have not tried this.
The other thing I did in the weeks after chemo was I used a little Jamaican Black Castor Oil on my scalp, eye brows and eyelashes for hair regrowth. I am pretty sure that helped, too.
Hoping you find a remedy for your hair.
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Shelabela, we’re the same age and I’ve been kicked into early menopause, too. I was complaining about body aches and pains to a co-worker who says she experiences the same things. The difference? I’m 44 and on tamoxifen; she’s 68. It dives me crazy that I feel so old and achy. I just survived breast cancer and want to be enjoying my life, instead I gently put my weight on my feet in the morning when I get out of bedbecause I know the joints are going to scream.
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Does anyone here have more issues with yeast infections? Just curious. I don't know if atrophy issues contribute to that, either.
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Runor, at my house when someone complains about a hair in the food I reply with: shhhhh, everyone will want one! (Thank my Scottish grandma for that). Anyway, yeah, no periods shortly before diagnosis and definitely none since, good riddance I say! The hair episode started for me last year...(3 years in to tamox) and like you mine was so thick the army used it as nuclear bomb blocking shield. It’s like my scalp decided to go on Atkins. My NP, and my Onc point their fingers at tamox. I do too, matter o’ fact I GIVE IT the finger! I’m not holding my breath for a change when I finish up, but a nice regrowth ofshiny, silky, shampoo commercial like mane is much anticipated. Yeah, that’s what I’ll get....work with me and my denial here!
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rumor
I have been diagnosed with alopecia areata...fancy term for my two bald spots! Taking steroid shots every six weeks in the scalp and a topical steroid 2x per day. Using cosmetics to cover the spots. They say that my follicles are still functional but need a jumpstart. Biotin etc has no real effect for alopecia areata because it is an autoimmune condition. In regular people.. not on meds... it is us thought to be stress related but it is an underreported SE of tamoxifen. Hoping it will grow back this year sometime. The rest of my hair is strong. I just have these theories bald spots!
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Scrafgal - I tried biotin and found that increasing the dosage to 5000 per day instead of the 1000 (approved by onc) made my nails stronger, and hair a tad better after a few months. I went as far as 10,000 for a while (max onc approved) but noticed nails and hair getting worse...so I googled ‘too much biotin’ and you guessed it...hair loss as a side effect of overdosage. Great that’s all I needed! Once I got to the 5-6000 range i saw improvement. What dosage are you taking
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I've been on Tamoxifen for 13 months. Thankfully, I haven't had the hot flashes or weight gain that many women report, but I do feel a pressure in my veins, especially in my hands (I'm also experiencing thinning skin and hair). It's to the point that I'm not sure that I want to continue taking it. It's something I plan to bring to the attention of my oncologist - though I may quit before my next appt. Anyone else experience the sensation of pressure in their veins? Thank you ~ Kim
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Egads, I am all about the denial, far be it from me to burst your bubble.
Thanks everyone for biotin and castor oil and other tips. And evening primrose. I am bad at taking supplements of any kind but now I have some suggestions when things get worse and yes, everyone DOES want a hair in their food.
Redemptive, if you are feeling so bad you're thinking of going off tamox, I wouldn't wait for my next scheduled appt with the onc, but make one and go in early and tell him how miserable you are feeling. Maybe there's a simple fix (she says jokingly). But who knows? Maybe there is? I hope so.
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Sleep- I have found a regime that works, and now get proper sleep every night. My problem was never getting to sleep, but I would wake up a lot, and have a lot of very shallow, restless sleep. This was going to be a dealbreaker for me, as it would affect my work if I was chronically sleep deprived.
Regime details as follows:
-take T in the morning
-get 30 mins exercise (fast walking, jogging, weights, swimming) during the day- this makes a big difference to sleep quality, I find.
-take 250 mg calcium and 100 mg magnesium with evening meal
-have small snack (plain yogurt and hi fibre cereal) about 1 hour before bed (around 9pm), with sedative herb tea with some honey in it
One other SE I’ve noticed, after about3 months on T- easier bruising. Apparently T affects how your blood platelets act. This is part of how it works, as the changes T causes make it harder for cancer cells to develop their own blood supply. So, whenever I see a new bruise, I think ‘good to see it’s working!’. However, doctor advised if you get a lot of bruises, get your platelet count checked!
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Chiarara: Can you tell me what kind of tea you use?
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Hi All,
Did anyone hear that chamomile tea interacts with tamoxifen? Just curious. I believe I read it on one of the forums on this site.
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