Bottle o Tamoxifen
Comments
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I too have crampy legs syndrome at night too. My oncologist says that it is most likely due to dehydration from Tamoxifen. So I need to drink even more liquids. Already drinking 4 big glasses a day so better go for more.
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For water intake I aim for about 80 oz a day. This seems to help with the cramping. Some of the ladies also swear by magnesium supplements.
If you want to know the ingredients you can use the pill finder on drugs.com and it lists the inactive ingredients. I actually have changed brands with some success in lessening my dry eye. I know it worked because I went back and tried several times and every time the agony returned. Glutton for punishment.
I also agree with all the comments about the revolving side effects. I have sworn I would quit several times and then the side effects abated.
Good luck to all the new initiates!0 -
I have experienced cramping all over in the past nearly 5 years of tamoxifen. Feet, toes, calves, obliques, abductors, radial to the arms and diaphragm. It is what it is. I have a 1 litre water bottle that I drink from over night and through the day so I get a lot of water. I’ve done this since I was pregnant with my first and all through my first craniotomy, (not cancer) and cancer including chemo and radiation. Hydration is only so much. I swear the the effects of the change in estrogen on the body is the cause. this is the price we pay to prevent recurrence. Stretch, recognize when a muscle spasm is going to come on and out stretch it. I still fight it after all these years. To me it is a fair exchange to know the drugs are working. I’m down to 1 half a 20 mg tab every other day. The cramping has not subsided I have just learned how to manage it. I can’t wait to be done tam, and am pretty darned anxious about it too. Bonne chances going forward.
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Molliefish, you nailed my sentiments exactly. Anxious to be done, anxious for how I'll feel when I AM finally done!
As to leg cramps, I find sudden movement is a trigger for me. If my leg is straight and I quickly bend it, look out! Same in reverse. Leg is bent and I quickly straighten it - heaven help me! This has impacted my sleep because I hover in a state of near consciousness to always be aware that when I roll over in bed or re-adjust, I do it slowly, deliberately, shaking out those threatening limbs as I go. As I feel a cramp coming on, that few seconds before full on OHMYFRICKINGOD happens and you flail out to stagger around the livingroom, tripping over the dog and vacuum cleaner, pounding on your thigh while crying and gulping water..... I can sometimes head it off by flopping my leg. Flopping is keeping the whole leg very loose, very floppy and just flopping it back and forth, side to side, let that droopy old muscle just slither and slide all over the place. I move it from the hip, keeping the knee loose. Imagine your whole leg is asleep and you have to roll it side to side like a wad of dough. I know this makes no sense but this, this floppy, rolly, shakey thing has saved me - sometimes.1 -
Thank you everyone! I started drowning myself in water yesterday based off everyone’s recommendations. I think I am noticing a slight difference today so I will keep at it;-
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Bns, I started taking 400 mg of magnesium glycinate as others had recommended it for muscle cramps. I think it has been helpful as I now have more muscle twitches, rather than major cramping. I have a lot of leg stiffness as well, but other than stretching a lot, I haven’t found anything to help with that. It really frustrates me when doctors say that muscle and bone pain is not a side effect of Tamoxifen, when so many of us on this site are experiencing the same things.
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Bns061179 - leg camps can definitely be an SE of tamoxifen. I no longer take it (I'm on Arimidex now). Magnesium really helps. You will find numerous posts about what people like and why. I switched to Mg-glycinate after reading one person's post, and I think it did work better for me than mg-citrate. I tried mg-malate after reading that athletes use it for cramps, but it did not seem to work as well for me as the glycinate. You can take too much, and it is in the same lovely jug that you get when preparing for a colonoscopy. Staying hydrated and active also helps.
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I ended my day yesterday with a 5 mile bike ride in our local park. It just about did my legs and hips in but I just told myself at some point it has to get better. The day fatigue is unusual for me as well. Hopefully, I will start PT this week and help my legs will not feel so stiff. I woke up last night to my left leg completely asleep. I guess why I am just so depressed at the moment is in my mind I thought getting the surgery and all the pathology/test results behind me I could just move forward as normal. I think the realization is hitting me that might not be the case for awhile. That’s okay, starting the day off positive with a giant bottle of water and my coffee!
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Hey Bns,
That was definitely tough on me. I thought that once I was through the radiation, I'd get back to normal. And that's pretty much what most of my friends/acquaintances figured too. But hormonal therapy can be tough, especially at the beginning! It took me almost a full year to find a comfortable new normal, and in the meantime, I really struggled. It really doesn't help that the world in general and too many doctors act like hormonal therapy is barely a blip (while taking chemo really seriously). Sure, there are some women for whom it's like a sugar pill from day 1. But there are plenty of us who are not that lucky!!
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Hi all! I am going to apologize up front if the answer to my question has already been posted somewhere here, but I really don't have the attention span to read through ALL of the content. Clearly Tamoxifen is a beloved topic 😏 Feel free to link me out to helpful info if you have it.
I have been on the T for just about 2.5 years. I've had insomnia, mood swings, hot flashes, crazy muscle cramps and brain fog. Thankfully I don't have all of them all of the time. While those things have all sucked, my hair has started shedding at an alarming rate only recently. I clearly remember being so relieved when I was told I did not need chemo because I didn't want to lose my hair. Now, I'm not so sure it wouldn't have been easier to just lose it all at once rather than by the fistful every time I run my hands through it.
So, I've got two questions...
1. Does anyone have any tips, products, strategies that were helpful for this? I'm taking Biotin and have resorted to topical 5% minoxidil to try to minimize loss and encourage new growth.
2. Is my hair going to recover after I quit taking this pill everyday - in 2.5 more years? It is impossible to find info about how hair 'recovers' from hormone therapy in general.
I feel so self-absorbed asking about this, but it's starting to really stress me out. I am super grateful that this is the item that bothers me the most and I am fully aware that not everyone is that lucky. Just looking for a bit of guidance from those that have walked this path already.
Thanks
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dearest SadieSue, I went through extreme hair loss from the middle of the summer 2019 to the spring of 2020. It was horrible. Bald spots, hairline thinning, all that. I was diagnosed in 2015, chemo rads et al through 2015 and started tam Jan 10 2016.
My hair grew back ok for the first three years or so but never to the former texture or thickness. Then whole shedding in 2019 was such a nightmare. My MO had no idea what was happening but did ok a reduction of tam. I dropped from 20mg a day to 20 mg every second day, and then boldly or not, dropped to 1/2 a 20 mg tab every second day. So 5 mg a day really. Finally in March 2020 my hair stopped falling out in handfuls. I did use Rogaine for women from feb 01 or so until mid July when my last order ran out. All seems pretty ok since then. My shedding is pre cancer normal. My hair is not at all like it used to be. It fine and dry and looks brittle but I have noticed the it is growing back and my pony tail is now about twice as thick as it was in March. There is hope. I am due to be discharged from oncology care in November so I’m a little nervous about that. That’s my story. Bonne chances as we say in Canada
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SadieSue, I too am about 2.5 years in on Tamoxifen and am finding that, like other SEs , hair loss comes and goes. From what I have read the degree of recovery varies from individual to individual.
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Also probably somewhere in this thread.... but not finding easily..... Heartburn with tamoxifen??? (More acid reflux than heartburn - like a big ball of acid in my throat?) Anyone experience this? I also get a weird 'full' feeling in my belly a lot - which I did see on here - but of course my post-cancer diagnosis mind sends me into a tizzy worrying that it is more cancer in my body. I started tamoxifen in June.
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Thanks Beaverntx! It's good to know what your experience has been with hair loss. I feel like the other SE's, while annoying, are at least private. This hair loss thing is so public. I guess I can count myself lucky that I'm working from home due to COVID. Maybe my hair will recover before the pandemic is over.
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LB13 - I got terrible heartburn with tamoxifen - it felt like there was angry ocean in my belly. I had to go on high dose omeprazole for relief. Thankfully after a while my body seemed to adjust and I was able to come off the omeprazole.
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SadieSue, you asked about helpful products / ways to manage hair loss. A drain catcher so that mess doesn't gnarl up your pipes or septic system. I cut a pipe cleaner in thirds and coil it like a snail, drop that on top of my drain grate in the tub and it catches the majority of the hair. Every two weeks or so I wrestle it free and throw the whole disgusting clot of hair and god-knows-whatelse into the garbage. Replace with new pipe cleaner curlicue.
Only recently my hair stopped falling out in such quantities. But I have a receded hairline and it is thinner on the top and front, making my bangs do incredibly stupid things. For the first two years I thought, holy shit, I'm going to be a bald, blind, limping, bitchy beggar on the street at this rate! All of that happened except the street part. There are moments of pure misery. Yet, like Molliefish, I worry how vulnerable I will feel when my tamox time is up, in two more years.
Lately everything, and I mean EVERYTHING my Hub does annoys the hell out of me. To a murderous rage state. I am annoyed at him when I open my eyes in the morning and he's not even here. Left for work. As the day goes on and I find a mess he's made or something I asked him to do 15 times and it's still not done I immediately begin plotting his death. The man must die! And then I step back and say wow, is this the tamoxifen talking? OR have I been a wife too damn long and have reached critical mass with cleaning up everyone else's mess? I don't know. Does anyone else find that their ability to tolerate bullshit has hit a hard zero?
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runor - yeah, my shower drain has taken a beating. I’ll see if I can get a similar contraption together to help keep the lines clear. Thank you so much!
I am not quite as rage-filled these days as I was in the beginning, but when I do have episodes, my poor husband takes the brunt of it. I know when I am being irrational, but that doesn’t mean I can stop it. Poor guy is probably going to come out of this with PTSD
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it’s not him, the poor bastard. They have had nothing to do with this, and in my case he has gone to the ends of the earth to be supportive. That doesn’t mean I’m not still ready to throttle him for his leaving all his shit at the front door, or expecting the magic hamper to do his laundry, or that there is some kind of whimsical dusting muse who happens by every couple weeks. I love him to death even though I plot the same some days.
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SadieSue - I did not experience most of the SEs you described except for muscle cramps when I took Tamoxifen. Magnesium really helped with the cramps, andthere are several posts about which formulations people like and why. I was already menopausal when I took tamoxifen and it seems like post suggests that the SEs are worse for those not at menopause. I was already experiencing periodic insomnia, and still do did not blame it on Tamoxifen, but maybe it was making it worse. I now take Ibrance and Arimidex, for about a year now. Several months ago I was getting the best sleep ever, and now I'm waking up anywhere between 12-2, often do not fall back asleep for a few hours. Trying several "nighttime teas" . I wonder if the drugs are to blame.
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runor--I'm now about 2 1/2 years off Tamoxifen and I can honestly say the desire to periodically kill my husband hasn't abated in the least so I'm thinking it's probably not Tamoxifen but rather the sheer stupidity of men. How can you tell one person to not do something 4 billion times yet they still do it? And then seem baffled by your anger? Just yesterday I was thinking that I might need therapy to deal with the fact that I can just look at him sometimes and want to wrap my hands around his neck. Ever heard the song by Pink called True Love? That's become my anthem. But then I realized that I'm not the one that needs therapy, he does, so I just go out and buy myself something (not expensive, just a little something for me) and I let him live one more day.
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and the Anthem is.... ‘Just One More Day’. I’m going to let him live one more day! We love them inspite of themselves. For all our men with BC I am not sure you can identify but if so change up the anthem!
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I am experiencing this heart burn.
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I posted this in the main hormone therapy forum, but thought I would try here as well. Has anyone gotten recurrent anal fissures on Tamoxifen? My skin in that area is very dry, thin, and fragile and prone to fissures after starting it back last October. I had surgery for the fissures, but it failed even though it's supposed to be 98% effective. When my surgeon looked inside during surgery, he said the skin looked the skin of "a 90-year-old woman." I do not have problems with constipation, horrible diarrhea, or any other issues. I was completely normal in that area before starting Tamoxifen (as confirmed by a colon and rectal surgeon) and nothing else changed except that. Then I started Lupron and everything got much worse, with me constantly re-tearing and healing and re-tearing. I am thinking of quitting due to this. Living like this is hell and I would rather die than go through this any more. My oncologist says there is no correlation and won't take my side effects seriously. I am going for a second opinion, as well as seeing more specialists next month.
I have heard of vaginal dryness and thinning due to these drugs, but rarely anal problems.
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Also, I have horrible heartburn and it definitely got worse with Tamoxifen. I am on 40mg Prilosec each day and it seems to help.
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Peridot, no heartburn with tam, just ending 5 years next month. I had dry skin as well prior too, and horrible constipation when on chemo. I did And continue to suffer from issues related to this including bleeding and enlarged hemorrhoids. I take a lot of care regarding my diet and personal care to prevent Constipation and infection etc. I have had these problems since my first pregnancy, Well before that really because varicos veins run in the family and chemo just exacerbated them.
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Lala, just now I was out in the berry patch with Hub, enjoying the last of the wonderfully ripe blackberries. I pop one of the succulent little beauties in my mouth, crush it against the roof of my mouth with my tongue, savour the juices, the tang, the goodness, then down it goes. He's over there, ripping them off the plants, throwing them into his face, literally throwing them, like tossing ping pong balls into a cup, and CRUNCHING as loudly and vigorously as is humanly possible and I stared for a long while trying to decide if I actually loved this person and finally said. "Must you chew like that? You're not eating rocks!" He looked at me like I was nuts. I also wondered if I was nuts. But I will confess here and later feel very, very badly that I have, but I wonder what the hell I'm doing here. I think about leaving all the time. Not that he's a bad man who tells me I"m fat or complains about my cooking or hits me. No. None of that. It's just that as he ages he's becoming...(and this might be the tamoxifen talking)...non-human. He's deaf. He gets heartburn. He can't sleep. His ankles hurt. His back hurts. He drags his feet. He throws food into his face and slurps and smacks. His hair looks insane. He wears dirty clothes into the house (mechanic, grease, oil, diesel fuel, hydraulic fluid). He moans about all the things he should have done in life but didn't when in fact he wouldn't. He rails on about how hard it is getting old. He slurps oatmeal and texts while I talk to him and I"m like....AAAGGHHH FUCK OFF!!!
All the time I think I need to get my own apartment and just not be around him for a while. I know that I am hell to live with. He says he can't do a single thing right. Yes! That is correct! Because you've been asked 10,000 time to NOT enter the home with oil or other flammable liquids dripping off your pant cuffs and yet you continue to do so! You have been asked to NOT sit in the living room and throw nacho chips into your face then stand up and grind all that orange shit into the carpet, where it becomes permanent. I have told you a million times that the sound of your eating will drive me to murder and yet you do not make any effort to curb your behaviours. I am a bitch. I know it! I hear it! It comes out of my mouth and I think wow, what a bitch. But it never ends. It's like having an old, stupid child who needs constant management, constant reminding, constant cleaning behind and constant feeding and I am tired. Tired. I am exhausted. I am wrung out from the energy it takes NOT to kill him. I think I love him. I think. But I don't want to live with him anymore. I don't want to deal with his hoarding as I try to turf out, pare down, streamline and simplify. Something in me broke. Was it sudden? Was it a slow straw on the camel thing? I don't know. But I feel hollowed out. I feel over. Done. It is a deep sorrow.
Should we not be happy as we head into the last years of our lives? Yes, I think we both deserve a certain amount of peace and ease of cohabitation. You'd think we'd have that worked out by now. But no. Instead things have reached the breaking point with me .He just blunders on as always, utterly oblivious to any struggles I am going through even though my struggles are NOT subtle or quiet!! I think living with me must be as exhausting for him, because what he wants in the world is to do as he pleases without comment or restriction or expectation or obligation and that does not happen when we are sharing a space. Frankly, I don't think it ever could. I don't think you can be in relationship to someone when you block out their basic influence on how you conduct yourself in a shared space. So I don't want him out of my life, but I sure as hell want him out of my space. I don't want his choices and actions to have such a massive impact on my surroundings and actions. Yes...I could leave the filth. Wait. No. That is bullshit. I cannot live like that and why the hell should I have to? Why does having him in my life mean that instead of doing what I want to do I have to spend my time correcting the violations to my atmosphere that he commits with his mindless, oblivious, blundering way of being? I am not a slave. I have choices. I don't have to be here. So why the hell am I?
So. Lala. Is this reality? Or is this tamoxifen? I don't know. I have struggled and sat with this and I don't know. My heart is breaking over the numbness where I used to have good feelings for Hub. It is a loss. A massive one. Can a drug make you loveless? Can a drug ruin your marriage? Can it make you intolerant, as Hub accusses me off? But then I ask, if a drug has made me intolerant, what drug is he on that has made him a thoughtless asshole? It's okay for him to be the way he is, but it's NOT okay for me to be sick to death of it? Is tamoxifen causing these moral dilemmas? I feel like a horrible, bad, pointless human for even writing this and I will feel awful if anyone reads it and is hurt by it, because I do not want to hurt anyone. But I still imagine a lovely little apartment. Clean, bright, no orange crumbs in the carpet, no pee in the toilet. No socks on the sofa. No work boots blocking the door and smelling like a refinery. No food noises that drown out the tv.... I am not liking myself right now. Not at all.1 -
Runor, I know if I felt the way you do I would try to get a way for a bit. Is there anyone you could visit safely? Your husband is deaf so he probably doesn't realize he is making all that noise. It sounds like he is depressed as well. It sounds like he doesn't feel well. Not all men are sensitive, most men have trouble sharing their most inner thoughts and don't want to voice their fears. Sometimes I might find fault with my husband, but I know if he died tomorrow I would miss him terribly. Would you?
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Flashlight, if my husband died tomorrow I would feel that god was punishing me for being a bitch and complaining about him. But then I think...is god that kind of manipulating bastard that my only two choices in life are suck it up and live with it OR we'll smite husband dead and THEN you'll be sorry? It seems that this is a form of cosmic blackmail that I don't really have much respect for. If Hub died tomorrow I would be mortified, bereft, floundering. I would ache and miss the hell out of him. But then again, it might be me who kills him, by holding a nacho bag over his face as he snores and farts. So... as I have said to him many times, I don't want him out of my LIFE, I just want him out of my SPACE. I want him to come visit me and be on his best behaviour, as I will be. Clean, polite, attentive, like we want to impress each other. All the things that attracted us in the beginning that have died a slow death. Maybe if there was a break from the annoying habits that push me to homicide my long lost tolerance would return. Or..maybe when I'm done tamoxifen my marriage will look like a good thing? I don't know. It would be interesting to know the impact on moods and thought patterns tamoxifen is capable of inflicting. So I say how I'm feeling, I lay it out in all its ugly honesty, I wonder if it's me, tamoxifen, aging, a bad marriage? I don't bloody well know!! (but a trip away for a bit sounds like a good idea!)
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When my husband was still in his first marriage, and the marriage was floundering and they were in counseling, the therapist had him read a book called Too Good to Leave, Too Bad to Stay. I never read that book but the title always intrigued me because isn't that the tipping point you're talking about?
In my own first marriage, I reached it at year 14 and waited to move out for another full year. We were divorced a year after that and I will tell you, life was hard, very very hard but oh so much better. When I moved out, I wasn't looking for a divorce (and in fact didn't file), I just knew I could no longer live with him.
So. No answers from me, just laying it out there that the calculus of better with vs better without isn't easy. For me, it was far better without. FAR. And that was way before cancer or any of this crap came along.
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Edj, you are wise and brave and I understand very clearly what you are saying. Staying is bad. Leaving is bad. But one is more tolerable than the other. I think the one that has hope for something better at the end of it is the better choice. I hooked up with Hub when I was 17!! Good god, we were children! (sometimes I think we still are!). We used to enjoy each other's company. Not anymore. It's so many things. It's getting older. It's getting more tired. It's getting cancer. I have lost all perspective and cannot see the forest for the trees. I hurt inside a lot. I go to bed feeling like hell a lot. Hating him, but even more hating myself! Hating this situation. I do think Flashlight has a point with some time away. I really wonder if a change of scenery might not bring some introspection and clarity? Or maybe, more wine is the answer? Hell, pot is legal, maybe it's time to let all my cares go up in a ball of smoke and laugh like an idiot at old Cheech and Chong movies? I do not know anymore. I just don't know.
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