Bottle o Tamoxifen
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Salamandra, switching brands is not an option I have. My tamox is provided free, but I get what I get. No option to pick and choose. Brands changed when there was a global shortage but then changed back when shortage was fixed. I felt no difference in that time.
Rain88 - this is so stupid. I took a tamoxifen last night and no lie, got out of bed twice to pee. I thought, what, already? Maybe it was that orange juice I had with dinner? It was so nice to sleep through the night without having to get up to pee!
About having pee urgency, have you considered estrogen cream? I have some Premarin that is supposed to be squooshed into my vagina to deal with various problems. I have used a wee amount of it about every 6 months. You might find that all you need is some smeared around on your girl bits, not even shot up your hoohoo, to make a small improvement in the tone and function of your urinary bits. Using a small amount of estrogen externally infrequently should NOT put you at risk of cancer but might help with quality of life issues.It really picks my ass, like REALLY that everywhere you read about tamoxifen the language used to describe the side effects severely downplays the misery this drug can cause. Discomfort, minor, mostly well tolerated, slightly inconvenient, easily managed, tolerable.... there is a lot of judgement associated with this dismissive way of describing and minimizing the real experiences of real women who really can't sleep because they have to wake up 3 times to pee! Tamoxifen has a known record of people quitting it before they are done. Is that because of 'discomfort'? I don't think so.
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Hey runor,
Thanks for the cream suggestion. I have to confess though that I am sworn off any extra estrogen products, as it is my belief that the extra estrogen I got from a short stint (1y3m) with HRT fueled my cancer. I feel that all these SEx turned me into a really derelict-feeling-twice-my-age lady. And the words "quality of life", what do they even mean? It annoys the heck out of me when people say that! I feel miserable most of the time. I get it, it's the lesser of two evils, but it is really not just some minor, easy to ignor life alteration. After all, it is not for nothing so many women stop taking Tamoxifen! Last time I saw my RO, a wonderful compasionate person btw, he expressed surprise at all the SEx I listed and said that none of his other patients had them. That gave me pause! What if it's actually only in my mind? But, nope, here I am, ready to go for a long hike and considering getting some seriously thick pads.
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Rain, many have sworn off estrogen due to the very reason you state. Any decisions you make have to be what you are comfortable with. I do not think weekly use of vaginal estrogen is wise. But I do, from my own point of view, think that a smear or two every 6 months, just to aid in the good health of our girl tissues, is not likely to end my life. There are threads on BCO that discuss this very topic, does vaginally applied estrogen cream migrate to your boobs? I can't remember where these threads are but I know I've read this discussed here. The consensus seems to be that no, it does not become systemic but just hangs around your hoohoo. If you can find the related threads they are an interesting read. I have a gland in my vagina that every now and then swells up and it feels like I have an orange stuck up there that is about to come flying out. It feels like I am prolapsing and it is AWFUL! It makes life impossible. Try buying potatoes and lettuce, the whole time you think, oh my god, my uterus is going to fly right out and slop on the floor right here in the produce section! I have walked around like that for months and with a few applications of Premarin, that feeling is gone! Sweet relief! That is a quality of life issue and the life I have better be worth living.
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Sorry to hear that one potential avenue of mitigation doesn't work for you.
I agree with you 100% about how side effects are minimized and how disastrous that is. I believe that a lot of women come off of all breast cancer treatment because of it, that might otherwise work with the doctors to find something better, and who knows how many women are discouraged from seeking healthcare for other issues because of the expectation that doctors will not take us seriously. Plus if these side effects were taken seriously, imagine the studies/research they might have done either about alternatives or effective symptom relief. But I really think that women's suffering is not considered serious by our larger culture, and that plays out in medicine as well.
I'm on toremifene instead of tamoxifen and it's overall been much better for me on side effects. But... I am really thinking about this night time peeing thing! I wish I had kept a better log. I think that I have been waking up at least once to pee since long before I started the drugs, but I don't know. Lately it's sometimes twice. I mention it to doctors when they try to prescribe me drugs to help with sleep but everyone's just kind of laughed it off, so I assumed there was absolutely nothing that could be done about it. I will look into this cream you mentioned.
I've had sleep issue for a long time that I know are not SERM related (UARS, a for of sleep apnea), but if there's something I could do to help with the peeing thing, that would be huge. At the very least, I will bring it up with more seriousness in my future doctors appointments.
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This is what my Urogyn told me. As women go through menopause, they often experience changes in their urinary function and may find that they need to use the bathroom more often, and more urgently, than before. These changes are due to thinning of the tissues surrounding the vagina and urinary tract, which are a result of reduced estrogen levels. Usually after menopause. The muscles in the pelvic area become naturally weaker with age. This can lead to other problems such as prolapses of the bladder or uterus. Even though I was religious about doing my kegels in my late 50's my prolapse started, but it was manageable. Heavy lifting can also make it worse. Within a year of taking tamoxifen I went to a stage 3, maybe to the beginning of the last stage 4. Last Feb I had a hysterectomy with repair. He had difficulty removing my uterus because the tamoxifen had caused it to enlarge and fibroids to grow. It was the best decision for me. I feel so much better now and it was an easy surgery.
Salamandra, I know what you mean. I think I have always got up, at least once, to go to the bathroom at night! I don't sleep well. I took 7-weeks off of tamoxifen for surgery and recovery and my sleep did improve during that time. Like runor I felt like my old self again!
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Flashlight, you speak the truth.The best part of getting the hysterectomy was the tamoxifen break. I took two weeks before and one week after. I felt fantastic!
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Flashlight, what you wrote I think exactly proves my point that every now and then a smear of estrogen (or estrogen like) cream can help those tissues not fall apart completely. I understand why women are hesitant to start shooting wads of estrogen cream up their vaginas. But if very occasional, sparse, limited use that is external (smear it around) and not internal can help quality of life an itty bit, why not? Why would a doctor not suggest this as a life improvement opportunity? Maybe once a month, or the first two days of every month smear on some cream and see if it makes an improvement in your urinary function? No internal applicators, just on your finger and smoosh it around. If it doesn't help after 6 months, quit. No harm no foul.
Too much information warning - but I have started to dribble. I never notice it. I never feel it. But I smell it. At the end of the day when I"m brushing my teeth and sit down to pee and it's like, oh my god, who died in my gonchies? I really RESENT the smell. I am a clean person. I bathe. I wash my clothes. I wipe. And I end each day stinking and I really hate it. It makes me feel gross and disgusting. Like a putrid old hag. My dignity and self respect are on the line. I think that is worth a smear of estrogen cream now and then.
Flashlight and Pi-Xi, if you feel like PMing me your hysterectomy experiences I would be happy to hear them. I have a feeling I am headed in that direction. No need to take up space here talking about it when the topic here is tamoxifen. I hear horror stories about the gas they pump you up with causing great pain as it works its way through your body. I also hear about permanent changes to bladder function and bowel function as the divider between them (your uterus) is gone and everything just sort of collapses in a heap. No lie, this worries me. So if you feel like giving me all the true and raw details, feel free. PM me if you feel like it.0 -
Hey! I’m nearly 6 months out from stopping tamoxifen. I feel pretty normal. No periods, though not surprising since I’d been pre menopausal for 2 years prior to diagnosis. My hair stopped falling out just after that and really has been pretty normal for a few months. I’d like to think it’s tam but I also haven’t had a colour since Nov 2020 so aside from actually knowing what colour my ‘natural’ hair is I also know how much sparkle I have. It’s not that bad. COVID has some minor redeeming qualities ....no not really. I feel ok. I have chronic sore throat that has been investigated multiple times by an ent so no signs of throat (or any) cancer but we always worry don’t we? I will be 6 yrs cancer free on June 8. This is a good thing. Life goes on. Mom is moving away, good for her and my youngest brother. She will be living on his farm in her own little house. No more winters by herself. We are looking at post retirement options. I have 3+ years to go, and since the pandemic we are being very thoughtful about where to go and what’s next. It is nice to have the options available. Take care my sisters. Love to all.0
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Molliefish, that sounded almost ...almost...like an over and out, signing off, 10-4 good buddy. I hope not! I hope you are not rolling off into the sunset to never drop by again. But if you do I wish you godspeed and that you never need worry yourself about another cancer issue, ever.
I am back on tamox after a month off, a month in which I felt normal again. Now (sigh) the sweats have started. The stiffness. The cumbersome getting out of a chair.
I feel really..I don't know the word... hoodwinked when my onc said at our recent phone talk that he wanted me on for the full 5 years and then he sort of slipped in that he's thinking maybe another 5 after that. This is the first I've heard that anyone felt 10 would be good. Just as I pat myself on the back for deciding to stick it out with 5 I get walloped with another 5? I tried to pin him down to exactly what he was suggesting but he was not going to be pinned down. Ultimately it will be me who really decides what I do. I felt GOOD in that month off. I will stick it out another year and 4 months. But after that? The benefit needs to be outstanding in order for it to be worthwhile. These night sweats are bullshit.
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runor, Good luck tomorrow when you see your Gyn.
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I stopped taking Tamoxifen after 9 years. I did 5 years and was told by my onc that I needed five more. I was allowed to stop at my nine year anniversary. I wondered if I had to do the 5 extra years but I never questioned it and listened to my doctor. Besides the hot flashes, I tolerated the drug pretty well taking 20 mg every morning without fail.
For those who stop early, best of luck! Hang in there!
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Wow congrats Lezza! I am close to three years on the little white pill. Not sure if I can make 2 more plus the potential five ugh.
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RAH2464 Thank you so much! Yes you can! You keep telling yourself you can! You have made it this far! 2 more years will go by so fast. After 5 years reevaluate with the doctor and see what she/he says. Best of luck!
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Rah2464, I'm with you, almost to 3 years on Tamoxifen. Planning to take a break at the three year mark and then hope to make it to 5. At this point do not plan to take Tamoxifen beyond five years. At that time I will be 82 years old and really do not want to continue dealing with the side effects and believe I am willing to take my chances while hoping to feel better!
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Lezza13 thank you for your dear encouragement! In honor of you I will keep at it
Beaverntx - I will walk with you Sister! I think your reasoning is very sound. I hope you have a nice break and can power through to the five year mark.
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Beaver - I hope you do feel better! I was off for a month recently and I could not believe how much better I felt until one day I thought, hey, I just got up off the sofa without creaking, groaning or pain. I just stood up. Just like that. Stood up! Swiftly and without flexing and going slow. No way!? So I think there is hope. Now that I am back on and the joints have stiffened up and the hot flashes are worse than before..... I don't think the oncologist realized the devastation of him saying another 5 years of some drug is what he's thinking. I screamed in my head.
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hey no I am here, I visit almost daily yet don't log in. I worry about everyone ie Mel is missing and it's her birthday. Had my last dose of Pfizer and my annual mammo in a 24 hour span. Hurt all over. Not as much as losing pubes to sticky tape though. My MO said maybe another5 years but then at the 11th hour said no, we think you are good. I would have declined regardless. This is a very personal decision and a real mind fuck to decide. Pardon my language.Xoxo
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Molliefish, I am relieved you have not wandered off, never to return. Pfizer and mammo on the same day? What cosmic Being did you piss off?
(sigh) I have to make a decision about a hysterectomy, which seemed desperate and urgent in April when all signs said loud and clear, holy shit, your uterus is a cancerous bomb, get that thing out of there!!! However, aside from a polyp which was removed, there appears to be nothing wrong with my ute. Nothing. Doc even said she cannot recommend removal for any reason other than my personal preference. She said that if the polyp comes back and more bleeding happens a polyp can be dealt with minimally invasively, just like this time, D&C and hysterscope.
So if I ditch it and end up sexually dysfunctional, dribbling pee worse than I already am, having poop problems, heart disease, bone density loss or my intestines fall out my vagina (I might have made this one up) I will be sorry I had the hysterectomy. If I keep the uterus and get cancer 4 years from now I'll be sorry I kept it. I have gone round and round on this. If I have a hyster can I quit tamoxifen or AI's? No. Still have to take those. Well shit. So Mollie, I hear you on the decision making. For me right now it seems that risk lurks behind every decision. I feel outgunned by this.
Hope your boob and jabby arm recover quickly!
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"and end up sexually dysfunctional, dribbling pee worse than I already am, having poop problems, heart disease, bone density loss or my intestines fall out my vagina"
Uh --checks self-- yep I ditched my uterus in 2003 and the only thing on that list that I have (that I no doubt already had because I'm lucky like that) is bone density.
Just saying.
Also keep that tape away from your pubs, I nearly sympathy cried for you when I read that.
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Edj, I am happy to hear that you are not pooping and peeing yourself as your intestines unexpectedly slither out because that is the textbook definition of a Seriously Shitty Day!
I realize that many women have a hyster and never look back. My mom had a hysterectomy on Monday and rototilled the garden on Thursday. No, I am not making this up. But I conducted an unscientific data analysis and interviewed 3 women I know who had hysters and all of them had problems that they had not anticipated. One has pee problems since the surgery, another has a too-short vagina for sex or smuggling drugs, the third has dry vag issues that require constant medication and none of them had their intestines drop out in the grocery store, but still, it could happen! So see, Edj, RESEARCH! With my luck I'll be the one in the crowd who drops her intestines. What's that saying, if it weren't for bad luck I'd have no luck at all?
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Runor I should know you come from serious beast mode stock. I'm tough but I'm not runor-mom tough!
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I know your post was from a long time ago but I am very interested in taking pycnogenol with tamoxifen! My onco said no, but I’m considering doing it anyway! Did you end up taking it
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Runor, I had post-menopausal bleeding on Tamoxifen. My oncologist told me to immediately stop the drug, and to have a uterine biopsy done. No cancer, but also no tamoxifen allowed anymore. Had a complete hysterectomy exactly one week before all non-emergency surgeries were canceled when covid hit. The pathology report showed fibroids, ovarian cysts, and something else that I can’t remember. All explained the frequent bleeding and pain of my entire adult life. It’s amazing to me that doctors are so resistant to hysterectomies, and also so quick to wave off pain and bleeding as just something to deal with. Good riddance to those unnecessary organs at this point in my life.
Fifteen months later and I’m on Letrozole - the 10 year plan because of the grade 3 breast cancer. But the hysterectomy was one of the best things I’ve ever done. Hopefully that has shut down the main estrogen factory in my body.Letrozole/exercise etc will do the rest.
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Hi all,
Nice to read about others' experiences. I have been on tamoxifen since the June 2013, so 8 years. Today I decided to take at least a month break after talking to my MO's assistant, who said that I had the option to stop, as 7 years was in my treatment plan. She said it was my choice. I was surprised as I had thought my MO wanted me to take it for 10. Her2/Triple positive is its own beast with no clear protocols as far as hormonal treatments since the main driver of the cancer is HER2.
I'm 56 and started this journey pre-menopausal. I don't know if what I experience is being menopausal or the tamoxifen and I really want to find out. I tolerate Tam well and have learned to manage side effects-- (I rely on daily high dose of magnesium to keep digestion regular and keep muscle cramps at bay; I do yoga regularly which makes my joints able to bike and run and hike). But there are things I don't know if they're related to tamoxifen such as I can develop eczema from gluten- so I avoid gluten and I'm also sensitive to alcohol and sugar (bad for skin and will lead to muscle often leg cramps if I don't take magnesium). I wonder if it's made my hair thinner and made it even harder to lose weight to get back to my pre-kid self- but right now I Iook at ice cream and gain a pound. I'm also concerned of the longer term health effects...I feel it's made my body more acidic and I want to avoid the other more serious problems. At the same time, I'm doing really well for the most part, so I wonder why stop.
So, I figure a break will give me some information- though I don't know how long- a few months or forever. I'm nervous to lose this extra protection so I might go back on it, but tonight's my first official night not taking it (I of course have missed doses over the years). I suppose I could go on an AI, but I really don't want to given what I've hear about those side effects, though perhaps some people tolerate them well. I'd be curious about that.
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Momwriter, my onc has offered to switch me to an AI and so far I have declined because at least I know the side effects I deal with and don't want different ones. I don't consider bone density loss a side effect, I consider that a medical problem and at least tamoxifen, despite its many miseries, protects against bone density loss. But I thought I was on tamox for 5 years and now the oncologist is making it sound like he's thinking about 10 years......
Which brings me to Princess Buttercup (best name ever! As you wish!). I have decided not to have a hysterectomy, which is a complete turnaround from early April when I was screaming RIP IT OUT, RIP IT ALL OUT!!!! But it turns out there is nothing wrong with my uterus. Not one, single thing. The gynecologist said there was no medical reason to recommend a hysterectomy. Unlike you, I was not having pain or back ache or on and off bleeding. I had none of that. Just that one time when the flood gates opened and basically a hemorrhage with blood clots occurred. It was like someone opened up the faucet and 16 or so hours later, abruptly shut it off. The bleeding did not drizzle off slowly over a day or two. It stopped. Abruptly and completely. Weirdest damn thing. So the pathology said there was no sign of hyperplasia or anything. I waited for the results of the pap (which took way longer to get back) thinking if there was some weird stuff going on with my cervix cells, then I'd have the whole works taken out. Nope. Cervix normal as ever.
I talked it over with my regular doc who said I should have a hysterectomy when I need one. When I have a solid reason to have one. If the mental worry is more than I want to deal with, the threat that tamoxifen could give me uterine cancer, then he would say go ahead and take it out. But if the worry is not going to overwhelm me he said I should save that surgery for another day. If I get rid of the unterus and have other problems, I'll be mad. If I keep it and get cancer, I'll be mad. But if onc says he wants to keep me on tamox for another 5 years I might have to reconsider this.0 -
Hi Runor,
Did your ONC tell you why 10 yrs of Tamoxifen might be recommended?What is the criteria they are using? Just wondering if your tumor is being retested or something
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Veeder, no. Onc said nothing specific. It was very odd. When I was talking to him and said I only had a year and a bit to go before I was done, his response was "yeah, well, maybe, we'll see, we can discuss that at a later date..." It was the first I had heard any mention that I was heading for more years of hormonals. My Oncotype recurrence risk was based on 5 years of tamoxifen, I believe. My score was 11. I do not believe my tumour is being retested. If it is, no one has said anything to me about it.
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Hi Runor,
That’s interesting. I don’t think I even had an oncotype test on my tumor. I’ll have to as
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Runor, I hear you on not wanting unnecessary surgery. For me the hysterectomy solved a lot of problems, not the least of which were frequent UTIs. So many issues, and my pathology report felt like validation that none of this was all in my head.
I think the important thing is to have doctors who listen and take our concerns seriously.
Also, it seems like many women have been hearing a new plan for tamoxifen and AIs recently. My plan just went from 5 yrs to 10, based on some recent research (according to my MO). Working on adjusting my attitude towards this…
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PrincessB, I think if a woman needs this surgery, they need it. All the ladies I spoke to who ended up with problems after the surgery still felt it was well worth it because the problems they had BEFORE were much worse. If I ever feel that the old uterus is going rogue on me, I will yank it.
Today I am feeling like someone sucked all my energy out. Dragging my ass around here, hardly keep me eyes open. Doesn't help that I can't sleep for more than 12 minutes before a hot flash wakes me up to whip the covers off and, 5 minutes later, pull them back on again. Another 5 years of this? Good god. I know that I will feel vulnerable and at risk when I no longer take tamoxifen. But I also know that month I was off it I felt so much better! Pisses me off! Ever since cancer it's like everything is a bargain. I'll take tamox to not get cancer but the cost is feeling like shit. I'll quit tamox to feel better but the cost is I might get cancer. I'll stay on to keep breast cancer away but ooops, giving myself uterine cancer. Go off to save uterus from cancer and too bad, breast cancer can come back to get you. I want to get OFF the train track as the train barrels down on me but it seems all I can do is wiggle off to one side and lose only a part of me (an arm or a leg, a hand or a foot) but there is no way to get free of this damn ever present threat. Forgive me. I am having a very pouty day today.
I can see myself taking tamox part time for another 5 years. I can see my onc being unhappy about that. He is already unhappy that I only take 60% of the suggested dose and have since the beginning. It might work for me to take 10 mg twice a week for another 5 years? No one has ever done the studies to see if that might help. I'll be a study! A cohort of one! But man...I really don't want to feel like this another 5 years.
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