Bottle o Tamoxifen
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Runor, thought I’d share my experience. I was 40 when diagnosed 5 years ago. Did chemo, mastectomy, then started tamoxifen in November 2016. Since my first chemo I had not had any more periods. My oncologist said my ovaries were probably just “stunned” but they could wake up at any time. A year ago I actually got a period so I went to the OBGYN for tests. Simple blood test was able to tell I’m not menopausal or even premenopausal. The fact is the week before I ran out of tamoxifen for the first time and went 5 days without. That’s all it took to get my period again! Fortunately once back on them the periods stopped again. And I did miss 3 pills a few months back and lo and behold - another period! So for what it’s worth, no period does NOT equal menopausal. Best wishes to you!!
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BLESS YOU RUBY SLIPPERS! Because this is what I have said now to the ER doc and today my regular doc, that we are all acting like I am post menopausal when in fact there is no evidence to support that. At the time I started tamox there was no evidence whatsoever that my body was even contemplating menopause. Yes, I have not had my periods since going on tamox. But that does not equate with having gone through menopause. Period suppression might just be one of the weird side effects I had. I outright asked my onc if tamox would stop my periods and he said no. He was dead wrong (he could not know how I might react to the drug). Last summer when I was off for one week, I got a drizzle event about a week later and I muttered that I better effing NOT get my periods back at the ripe age of 56! I was 53 at diagnosis and my periods showed no sign at all of slowing down. I was not sad to see the end of them and will be traumatized as hell if they come back when I'm 59 and off tamox! What the hell kind of bullshit would that be?!
I was lucky to get in today for an ultrasound and peeked at the screen which said my lining was 1.7mm. I went online (Doctor Google!) and have read that anything UNDER 4mm is considered to be 95% certain to NOT be cancer. But when the doc called with results he said there is some thickening, because at its thickest it's 2mm thick. Even if he was rounding up from 1.7 to 2 mm, that's still not considered thickening (from what I have determined). He wants me to have a biopsy anyway and is muttering about a hysterectomy. For a uterus that is not thickening, by the standards I have read so far? Hmmm. I suppose with my breast cancer history he is wanting to be thorough and I can't fault him for that. But I absolutely think you have a point Ruby, I might NOT be post menopausal. I am the world's oldest not menopausal person. (57) If I get my periods back after 5 years on tamox I will step in front of an oncoming train! Lord!0 -
runor - first of all thank you (and DNG77) for the support and camaraderie re: the weight gain! I guess clearly it happens with tamoxifen and now the question is whether I stay on it at this heavier weight or try and go off it and get myself into better shape. I also get winded easily BUT I can swim for an hour so its weird.
And here with you and others hoping for the best once you know more on the recent bleeding... my periods were irregular for my first 6 months on tamoxifen, I think its entirely possible this is just an irregular period. I agree with others that the attending doctor should not have assumed you were post-menopausal since tamoxifen does stop periods for lots of people, and I've read many posts about how that all comes back once they stop. Also uterine thickening is a known side effect of tamoxifen, so that's probably all that is. Doctors always go to the most cautious worst case scenario, I guess they have to be cautious.
If it helps, found a couple articles...
https://www.cancernetwork.com/view/benign-and-hype...
This one (linked above) basically says changes to the lining of the uterus are common with tamoxifen and very rarely actually cancer. "A number of investigators have documented an association between tamoxifes and benign endometrial changes such as polyps and hyperplasia (Table1).[1-6] These conditions have been attributed to the estrogenic activity of tamoxifen. A review by Assikis et al[7] estimated that tamoxifen patientshad a threefold increase in endometrial proliferation and polyps and a tenfold increase in endometrial hyperplasia compared with controls. Although the incidence of these endometrial changes is high, the chance of these conditions progressing to endometrial cancer is low; "
https://pubmed.ncbi.nlm.nih.gov/9057510/
This article (linked above) says this - which puts you well within the normal range: "Endometrial thickness was measured in anteroposterior dimension and was considered normal when less than 8 mm."
I hope that helps! Please keep us posted.
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runor--I had a hysterectomy 2 years into Tamoxifen. My gyn was keeping an eye on my lining via TVUS periodically and when mine got to 1.8mm relatively quickly, I had a hysterectomy. Total. Ovaries, tubes, uterus, cervix. The whole shebang. And yes, I was tossed into surgical menopause. Hot flashes but not too bad since I sleep with a fan anyway. But I gotta say, I feel really really good! No longer get all the bloating even though I didn't ever have periods on Tamoxifen. And when I did the hysterectomy my doctor found that I also had an enlarged uterus and multiple ovarian cysts so really I'm glad I had it done. I'm sure you would rather not have to have a hysterectomy but it sure was a lot easier than a mastectomy!! And it's nice to not have so much of the worry of those cancers (albeit it's not gone 100% according to my doc).
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Way before all this cancer BS, I had massive period issues as in I just never stopped bleeding. I was dx'd as a high estrogen producer, and went through 2 boxes of super plus tampons every single month, and some months more.
I finally, FINALLY switched to an OB-GYN who listened, took my history seriously and performed a hysterectomy plus removed my very problematic left ovary (I had a tubal pregnancy that really acted weird and the fertilized egg went into the ovary and then the tube wrapped all around it--that was as unpleasant as it sounds).
What a game changer that surgery was for me. Not only did my anemia nearly resolve, I recouped the deductible cost that first year by not having to buy tampons.
I share my story, runor, just in case you get to the point of surgery. I never, not once regretted ditching my uterus. The only drawback was timing--I had been married for about a month when I had the surgery and my surgeon said no sex for 12 weeks. That's mean for newlyweds, you know?
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Thanks for that Edj. I had to laugh when the emerg doc asked if this could be the result of rough sex. Sex? (blink, blink, crickets chirping in the silence) Uh,,,no.
I am trying to keep my spirits up but it is a struggle. I feel weak, winded and tired. Not sure if this is a blood loss thing (although test showed I was not anemic) or just emotional exhaustion, which I suffer from because I am a massive baby. Or not eating. First thing I do under stress, stop eating. Hub knew things were bad when I refused coffee in the morning. What? No coffee? CALL THE AMBULANCE! I hope I don't have to have my lady bits yanked out, not looking forward to more surgery. I keep telling myself it might be nothing, it might be nothing. But we're all here because our might be nothing was something. So...tense. Hugs and thanks.
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runor wrote:
"or just emotional exhaustion, which I suffer from because I am a massive baby."
I've fixed it:
"or emotional exhaustion, because this is a tough situation and I'm tired."
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Edj, I am hugging you right now.
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Ahh Runor, sorry to hear about this new go around of stress and really hoping it turns out to be nothing for you. Hang in there and don't beat yourself up about your feelings!!
Arlva, I've always been a bad sleeper. Lately I've found that a combination of high dose melatonin (20mg) and low dose ativan (5mg) helps me get enough sleep and stay asleep.
In terms of antidepressants, I went back on wellbutrin after I switched from tamoxifen to toremifene. For anyone else struggle with tamoxifen, I'll just say it was a really really good switch for me. It took some discussions with my doc but as far as I'm concerned the clinical evidence for toremifene for premenopausal women is just as strong as for the OS/AIs, even if there is less American anecdotal evidence.
I definitely gained weight while on tamoxifen, but I was also dealing with other major stressors so it's hard to tease apart since I'm a stress eater. I've been doing the keto diet à la Reddit (which emphasizes protein rather than fat) for about six months and I'm back down to a size I had kind of given up on ever seeing again! It turns out that lock down is a great time to not be tempted by outside food...
Anyway thinking of all my sisters here and wishing you good things!!
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Salamandra - always good to hear from you! Very encouraging that you were finally able to lose weight on a Keto diet.
Runor and edj3 - please keep us posted and sending hugs. And cute puppy pics because these have been known to be de-stressers.
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Such a beautiful picture of a beautiful creature!
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I went off tamoxifen March 28 because I was pretty sure I'd be having a hysterectomy and felt it was best to be off a drug that predisposed me to blood clots. It has already seemed to very happily predispose me to uterine cancer.
Today, April 22, I am still not taking it. Not quite a month off and this is what I have noticed.
- I do NOT get out of bed at night to pee. Sleep all night, no peeing!
- I do NOT groan and hobble when I get out of a chair! My first steps in the morning are NOT wobbly and staggery.
- hot flashes have diminished but not disappeared entirely.
This gives me hope ! I do have to go back on tamox at some point. But blood tests have now made it clear that I am past menopause, so I could take a different med, not that many of them have a much rosier outlook than tamox. I might just tough it out another 1.5 years on the tamox cause the devil I know is better than the devil I don't know. I am not anxious to go back to creaky bones and overactive bladder. But I am hopeful that once I'm done I might be something like my old self again!0 -
Runor, it’s great to hear that you are experiencing some relief from the Tamoxifen side effects. It gives me hope that there might be some light at the end of this tunnel, although I have only completed my first year on the medication so I have a long road ahead.
Enjoy every minute of your current respite!
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Gosh runor, you mentioning having to get up to pee in the night was a bit of a light bulb moment for me - I've been pissed off (pun intended) the last few months about always waking up for a pee, never having had that problem before. Thank you tamoxifen
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Amusing - we know that tamox has a powerful negative effect on girl type tissues. Our urinary tract is a girl type tissue. I was also surprised after a few nights when it dawned on my, hey, I slept all night. I didn't get out of bed to pee! That staggering to the damn bathroom half asleep is not only bad for decent rest but a real toe stubbing threat too!
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OMG I think you are right! I had gotten accustomed to getting up in the middle of the night to pee. Didn’t occur to me that it could be tamoxifen until I saw your post and am also on a month break (due to my worries with the blood clot issue and vaccines, so my oncologist recommended I stop tamoxifen while getting the COVID vaccine). Just realized I sleep through the night and light bulb went off.
I do plan to go back to tamoxifen due to all the studies associating it with reduced risk of recurrence. Although part of me is reluctant now!
Posting cute puppy pics just cuz (Salamandra thx for the comment!).
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Runor--I also had a hysterectomy in the middle of my 5 years on Tamoxifen so had the option of switching to an AI. My BS actually recommended I stay on Tamoxifen. He felt like it was more "better the devil you know" situation. He pointed out that I was doing "OK" on it and who knew what kind of issues I'd get from an AI for a very small increase in efficacy. He said most of his patients had far more issues with an AI over Tamoxifen. So I did my full 5 on Tamoxifen quite happily. No regrets.
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lala1, That is good to know! I had a hysterectomy last year and I told my MO I didn't want to change to an AL. If I had I would have had to add a bone building drug to my regime. So far so good! After my hysterectomy I didn't have to get up to void as much. Another positive. Best wishes.
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flashlight--As to a hysterectomy, mine was 6 years ago. No regrets but wish someone had told me about vaginal dryness and it leading to painful sex. Now I have vaginal atrophy and I'm looking into pelvic floor therapy or something to help. If I'd known how bad it could get, I would have stayed waaaay ahead of it!! Apparently lots of sex is the key!!
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Lala1, I think my thinking about tamox is pretty much same as yours. Better the devil you know.... I am still off tamox, waiting to hear if I am in for more surgery. If I am headed to a hysterectomy then it's probably best to stay off until that is all over with. Mind you I could wait months for surgery and I don't want to be off tamox that long. ALthough it might well be the tamox that caused this (possible) uterine cancer in the first place! So do I go back on tamox to protect myself from breast cancer or stay off to protect myself from fueling uterine cancer? Rock and hard place, me thinks. But my Onc said as yours did, that the benefit of changing to an AI at this point is likely to be more trouble than it's worth. Now I know that once I'm off tamox the creaky bones and seized joints will snap back! I have been very grateful to have my body movement ability come back so swiftly.
Still waiting for the phone call saying if this is cancer or not. My money says I'd be a fool to bet against it being cancer. I wish I was hopeful, but I am not.
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runor, I got off tamoxifen after 2 months . Couldn’t handle the headaches and weight gain. Finally had difficulty breathing. My oncologist prescribed Toremifene and so far so good. I was thinking of quitting meds but she said my cancer is or was very aggressive and she want me to try and stay on it. Thinking of you and praying for good results for you
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Heard from my regular doc that I do NOT have uterine cancer, (I can hardly wrap my head around this, I was so braced for bad news as all evidence suggested) but I do have other things going on. One that he mentioned that I knew nothing about is adenomyosis. The feeling is that this was caused entirety by the tamoxifen. And I even take it at about 60% of the suggested dose and this still happened. If any of you are curious, it might be worthwhile doing a little research into adenomyosis, tamoxifen and postmenopausal.
This is not for sure, but I think it will come down to if I want to stay on tamox, the uterus has to go. If I want to keep my inner bits, then I have to switch to a different AI. I will have a better idea when I speak to the gyno and oncologist in the next few weeks. I am happy with this news but at this moment, still in shock.
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YAY Runor!! I am so happy to hear this! Sorry you had to go through all this, but YAY!
Can you give yourself some time to soak in the good news? How urgent is it to remove the uterus or switch away from tamoxifen?
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That is fantastic news runor! Obviously you still have to deal with the current symptoms and make some decisions, but no cancer is brilliant
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Woo-Hoo!!!! That is wonderful, wonderful news! I am so sorry for the other condition, but that is just the best news on benign!!! So happy for these results for you.
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Whew. I've been on pins & needles on your behalf--I'm so glad to hear your news.
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In my heart I thought that that this was not cancer but some other menace waiting in the wings. Funny I trust my instincts for me, but how do we express this to others? . I am so pleased for you, and I am sorry you went through the wait the endless WAIT to be given this news. What a relief, what a PITA. March on Woman!
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I have been off tamox since March 27 or 28. I can't believe the improvement in my rickety, stiff joints and no longer having to get out of bed to pee every night. But I think it's time to go back on and I have to admit, this is a struggle. In my head I know all the statistics that say 5 years of tamox give me a good chance of keeping my recurrence risk to a minimum. But man ... I had forgotten what it felt like to move without my joints aching and creaking. I am hoping that when I start up I don't go through all those initial symptoms, which were horrible. I remember by calves, ankles and feet feeling like they were made of wood, like I had lost all flexibility and bend. I stumbled around those first few months, it was awful. Then followed by falling out hair and night sweats. And let's not forget constipation.
My pathology report mentions tamoxifen and that what they are seeing in my uterus is in keeping with tamoxifen use and I wonder, I take tamox to prevent breast cancer at the same time it's turned my uterus into some unreliable tyrant prone to erupt in biblical bleeding without notice. I mean, I have a pathology report. Which points to tamoxifen. As responsible for this last month of terror. And now I'm about to swallow one of those tablets. Am I mad?! And by that I mean crazy, unstable, coo-coo, off my rocker, half a bubble off plumb. I know that distant cancer is the biggest statistical threat and that uterine cancer was increased, but still not overly large. Except now it is. No, it's not cancer and not pre-cancer, but it's still something. Something went wrong.
So I am going to stare at that pill a long time tonight, the taste of toothpaste fresh in my mouth and I am going to have a hard time popping it in and swallowing it. I remember when life was about things that were not this.
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Hey Runor,
Ugh, what a crap situation. I think one of the hardest parts is not actually knowing whether the hormonal treatment is doing any good at all. I wish we had an oncotype for that!
Have you tried switching out the brands of tamoxifen? When I was having trouble tolerating it, I read on these boards that for things like joints and stiffness, different women had different experiences on different brands.
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Hi runor,
Just wanted to chime in... Your "I remember when life was about things that wasn't this" struck a chord. I've been on tamox. for less than 1.6 y, only 10mg and still have the SEx you've described. I sort of accepted that it is what it is, except for incontinece. Boy, I really have to plan my outings around access to a restroom. Which is not normaly a problem, right? Except when out for walking or hiking... Can't tell you about the logistics of having to empty your bladder bellow 0... Or having to dash in the bushes because it's awfully unpleasant to feel it leaking... So I count the time until I reach the 5y mark. I see that you have only 1y left? I totally get what you're going through. Hopefully you'll have less SEx this time around. (((Gentle hugs)))
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