Bottle o Tamoxifen
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Please, NO ONE leave!! This is a great discussion.
Can someone remind me what the benefits of a split dose are again?
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Rhyfelwr, my MO just put me on Effexor last week. I know it takes time to notice a difference, but I haven’t noticed anything. And I still can’t sleep. Ugh.
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TaRenee: PLEASE keep us posted.
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I tried a split dose for a while and didn't notice any difference in the s/e's from just 20 mg all at once. I tried morning, night, midday. My bone pain never let up. I tried Effexor, Gabapebtin, Cymbalta. Nothing stopped the headaches (which could have been caused by gab) bone pain down neck, spine, arms, legs until very recently.
Hotflashes, joint pain, lack of libido, dry skin and thin hair continues. I fear that both elbows and right shoulder may be permanently damaged. I keep having steroid injections in them. Although, I'm taking a rest from Tamo right now, I am due ro see a new onco in March (insurance change) and hope I can try a different h/t drug that I can tolerate better. I'm the gal who never finished all the prescribed chemo or herceptin due to my body giving up on both. Guess I'm just a weak link.
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Split dosing, for me, makes the side effects more tolerable. Even if I just take them 5 hours apart, towards evening, no daytime issues. I have to walk, or I will get joint and bone pain. Also, I take Vitamin D, 50,000 per week, and if I get too much bone/joint pain, I take a magnesia tablet and put a bar of soap on my leg. Right now, wink, wink, I am wearing Peter Thomas Roth's face soap on the back of my right lower leg. Thoughts are that the magnesium in soap is absorbed through the skin, like taking an epson salts bath. If you travel, and can get freebie tiny soaps, they come in handy later.
I just hopped on to Amazon, and found/ordered Grandpa's Epsom Salt Soap. I will cut it up, and see how much relief I get. I will keep everyone posted.
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Well, I've just started sleeping with soap, but it's a new lavender soap that I keep nearby for its scent. And it's pretty.
I've been taking Tamoxifen for over a year and have no side effects that I can attribute to it.
I've always had insomnia and somewhat dry skin. My hair isn't as thick as it was before chemo, so I'm not certain Tamoxifen has affected my hair. I had a bit of joint pain a month after I started Tamoxifen, but that lasted less than a month. I have no joint pain and never had bone pain. Neuropathy from chemo only lasted a few weeks.
After years of taking various pain meds, I'm happy to now only take Tamoxifen (20 mg) and supplements. After a mastectomy and chemo, Tamoxifen has been a cakewalk. I wish it could be as easy for everyone.
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I’m joining this page since I’ll be starting this dreaded medicine in a few days. Worried about side effects already, but you all seem to have that info covered on here.
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Ghionik: Try not to worry yet. Some people have absolutely zero side effects.
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Please don't think of it as dread, it is different for everyone. There are alot of complainers, but those that are doing well, are busy living their lives. I am doing terrific and I have one year down...yipppeeee.
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COMPLAINERS !?!?! Holy shit! Re-think the name calling! Posting here to say you have a problem sure as hell does not make you a complainer! No one should EVER feel that they can't speak their piece because someone else is going to run in, point a finger and chant complainer!, complainer! That ranks right up there with going to your boss to say you have a problem at work and he asks you if you are having your period and dismisses you as hysterical and female.
I do believe the title of this thread is Bottle O' Tamoxifen, not, We Worship At The Altar Of Tamoxifen.
All voices are equal and allowed or NONE are. Leave the labelling, tagging, name calling and passive aggressive coercion at home. People's experience with this drug is all over the map and having a bad time with it DOES NOT MAKE ANYONE A COMPLAINER!
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I confess. I complain all the time. Especially about these stupid Tamoxifen SEs. But that's ok. I don't take offense if someone calls me a complainer. I don't think it was meant in a condescending way. Sometimes a word just is taken differently by different people. I've been on Tamoxifen for almost 5 years and have literally 20 days left. I'm just happy there are people on here that are doing well and letting others know that this experience is doable. It has been for me. And personally, complaining about the stupid crazy crap we go through in our treatment of BC has been the just about the ONLY fun part!! The only thing I'll miss about Tamoxifen is being able to blame it for my CRS (Can't Remember S**T!)
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You SHOULD take offense if someone calls you a complainer! Who here has any right, any authority, any power to name, categorize, minimize or belittle your experience? No one! Women don't come to this site for a sugar coated, sparkly, FAKE story. They come for YOUR story. And mine. And Michelle's-in Cornland. No one's voice, no one's story has ANY more validity than anyone else's!
Michelle is absolutely correct when she says some women sail right through tamoxifen without a second thought.
You are correct when you say you did pretty well and will have to find something else to blame forgetfulness on.
And I am correct when I say I am growing an impressive beard, have a weird bald spot on the front of my head and produce enough heat, in waves, day and night, to power a greenhouse.
Not a single one of us is a 'complainer' and that word has no room at a table where all are invited and welcomed, equally, to speak their truth.
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Eeesh - I read this thread because I had been told that Tamoxifen might be a next choice though I have been on Aromasin for two weeks now instead. Reading my fav topics this evening and here this is. I cannot ignore this one. Man oh man.
The descriptive word 'complainers' is offensive to me, Michelle in Illinois. Perhaps that was a quick oversight?
This statement would be offensive if written on any thread about any treatment choice. Yes, this is name calling..... and leaves a very bad vibe.
Any person who is having some comfort issues of whatever treatment they are on, fear of using treatment issues, even acceptance issues,with their treatment choice needs to always be welcomed to express those concerns and problems. Without !!! being !!! considered !!! a !!! complainer !!!
And to say the non-complainers are doing fine and out living their lives is questionable. What about those on these threads helping others for hours a day whether they are doing well or pulled through treatment and stuck around to support us. What about those doing research for hours and days. Those who are too sick to eat or walk and who come to the threads to cry and laugh on these threads because this is a sisterhood / brotherhood where their tears and anguish and even appreciation of the 'sick cancer jokes' can be appreciated and where they can be loved regardless of what they bring to the table on any given day.
I try to never look back and argue stuff like this, and I like to let it go once saying what I feel I just have to say. With respect to all, I offer this as my opinion.
Dropping microphone. Bam.
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Ladies
I am still around. I've been battling the flu this week and just didn't feel up to posting gmtoday...until now... Runor and Bluebird, when I read Michelle's post I knew where this conversation was headed...and to be fair, I felt that the term "complainer" marginalizes the legitimacy of real side effects reported by many women here.
Bottom line: to our newcomers, there's no need to worry in advance. I did that, and it turns out that I am doing well on Tamoxifen. You just never know. So enjoy today and deal with tomorrow when it arrives!
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ghionik,
Welcome. I've been on tamoxifen for 3 months and have a few SE but they are manageable. 1 thing to remember every body reacts different. And to keep a long of when you take the pill and how you feel. I've found i have to take it I the AM.
Hang in there
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Thank you ladies! This will be mynew home on this site. ❤️
As far as the word “complaining” doesn’t scare me one bit. I’m clearly good at it. Lol
Thanks for the welcome! Xo
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I've been on Tamox since May with minor drop-off for Exchange surgery. Minor side effects. Hope it's working!
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Am up to my 2nd week of Tamoxifen- and insomnia has kicked in
Only other side effect is positive- less oily skin- but the insomnia is a doozy, up from 3am this morning. Please don't ask me to make any complicated decisions... Where I live it's currently summer, so I am going to blame any sweating on the weather.
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The one and only side effect of any of this is that I no longer get any oil in my hair at all and I could go a month without showering without getting the heebie jeebies.
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Trvler that sounds like one side effect I might enjoy.
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I picked the tamoxifen up at Walgreens a few minutes ago. Starting it tomorrow. Hoping for no bad SE’s.
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I found that some of the side effects tapered off after a while. Like the leg cramps. At first they were very bad (in bed at night), but now it's way better. At first I was quite constipated but that got better too. So there is hope on the horizon. Keep notes. It will help you notice when effects fade away or when new ones come up. Over time this will help you develop an overall picture of how you are doing on the drug. So give it a little time.....
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this week marks two years complete. I still have the occasional hot flash but was 2 years into menopause when I started tam. I have a camera guided biopsy of the uterus on March 7. Hoping for and expecting the best. I have no other side effects other than the thickened lining and feeling of fullness. My hair is thin but I blame chemo. I'm happy to have it so I'll not complain. My skin is ultra dry, my eyes too. I suspect all of these taper my new normal. I am not uncomfortable or unhappy. I am not angry or railing against what happened. I just am.
Happy
Living
Loving
Just be. Feel the world around you. Appreciate the moments, leave the anger behind. Be gentle not abrupt, just be you.0 -
The leg cramps and constipation were the easiest things to fix for me. Magnesium for constipation and the second you feel a leg cramp, turn your toes towards your body and it stops them dead. I am sorry if I am being annoying to keep posting these tips but I do it in case someone hasn't read them and it can help. Hi Mollie!
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Pill number one is down the hatch. Thanks for all the tips you have for SE’s. That’s funny how turning toes toward your body gets rid of leg cramps. 😄
Whoever suggested to get a journal and track SE’s was a great tip too. I’m getting one today and will leave it by where I have the pills. My MO warned to watch for the rare signs of blood clots can form in legs. Good Lord. I hope that’s a way different feeling than leg cramping for pain.
I hope everyone has a great weekend and thanks for all the tips and advice. Xox
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Ghionik, sound good. My only issues were the first week before my MO told me how dehydrating Tamoxifen can be--that is when I felt dizziness and perhaps some constipation. I already was drinking 80 ounces of water per day...I had to increase that to 96-100 ounces per day....and drank at least 16-20 ounces BEFORE my morning Tamoxifen. After week 1, neither of those has been an issue. I have been taking it since late September last year.
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I love this advice to watch out for blood clots. Never having met a blood clot in real life, I'm not sure I'd recognize one if it happened. Early on I had a weird and incredibly painful bruise come up on my wrist. Didn't hit my wrist on anything. Just all of a sudden it started hurting, an angry bruise appeared next day on the inside of my wrist and next day had leaked through to back side of wrist. Like my arm had been crushed in a vice. So I'm looking at this and thinking, is this a blood clot? I have no clue!
If docs tell you to watch out for blood clots they at least ought to provide a picture, like a Most Wanted poster, so you'll know one when you see it!
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Good sleep last night- bliss. My personal trick, to not getting entrenched in insomnia land is to spend LESS time in bed, not more, but it is hard when you are tired. Lucky I’d planned a lunch with some good friends yesterday, and that kept me awake and distracted. If nothing else, this solves the problem of when to exercise. If I’m out of bed at 5am, I’ll be looking for stuff to do!
I like the tips, too, as a newbie.
Scrafgal that is very interesting, as I’d noticed I suddenly seemed to need to drink a lot more.
Runor- yes, watching out for blood clots. I have the poster in my bathroom! Actually, over the years, two people I worked with have had clots, so I have made the personal acquaintance of some clots
For both people, the only reason they realised something was up was they got swelling which suddenly made clothes fit oddly. So one guy (clot in the calf) got things checked because his sock and shoe were really tight, and the woman realised something was wrong because she could not get sleeves to go over her arm (clot was high, near the shoulder, so her upper arm swelled a lot).
Have now finished my 2nd week of the Big T. Only 518 weeks to go..
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when i started tamox i had occasional warm flushes. The brain fog memory stuff carried over from chemo. Been on it since june 2016 and doing quite well. Fequency of warm flushes has gone down and im in menopause.
People not doing well yend to post while those doing fine are gone. Thats the problem is it looks like tons of people have ses when in fact many doing well on these meds are done with this board.
The only way to know is to give it a try for a decent amount of time if you are high risk. I was so scared before chemo reading the issues here, rads, hormonals that i almost said no way. But for me everything has been bearable. No one knows how your body will respond so imo be aware of the ses but don't dwell so much on someone's experience for there is another out there who did fine. Too bad those doing well dont stick around to post to even out this forum better but people are living their lives bearably.
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All info at this point, is helpful to me. 💕
Only 1824 more days of this stuff. I drank a ton of water today since I was warned about being dehydrated.
You ladies are my heroes!
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