Bottle o Tamoxifen
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runor, I'm with you in being uncomfortable with " I didn't choose to have cancer, but I can choose how to respond" First of all you have to be in an emotional position where you have choices, where you can be strong, be logical and philosophical. I had to have biopsies for suspected endometrial cancer just after my 're excision and before rads. I'd more or less coped up to that point, but I completely went to pieces at the second lot of biopsies. I sometimes felt like I was drowning in a flood of despair and panic, and I would have given anything not to be in that place. But it wasn't lack of moral fibre or guts or determination, and I look back now and just want to give that self a hug. You can deal with so much, but sometimes another load gets dumped on you, and it's so darned hard to struggle on. So sending you hugs, because I know what it feels like.
I have an appointment in a couple of days with the opthalmology consultant, for the suspected tamoxifen toxicity. I expect it'll turn out to be nothing, but it's hard to stop my mind thinking of the what ifs.
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Hello Sara,
Glad the pain has lessened and it will, I think mine was gone after 3 days, but boy did was it painful the first two days. The twins are still out for summer vacation, they have been helping me once a week at my clients house (I clean houses), which has been a blessing. I am weak and in pain. I am trying to do little workouts - weights and yoga, sometimes step aerobics if I feel strong enough to build back my stamina and muscle. Unfortunately we haven't done much this summer, but they seem to be ok with that. How is your "summer" going?
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Hello ladies...I am so happy we have this forum to vent to each other. We are the only ones who know what each other is going through. I have been on Tamoxifen for about 9 months now (wow I cannot believe it has been that long) and I must admit most of the SE's have evened out - I rarely ever have hot flashes anymore where as for the first few months they were constant - especially at night. My biggest issue is the joint pain & lower back pain. While it seems to be "better" - it still bothers me when I get up and down from sitting or get in/out of my car...I feel like an old lady. I will say I take Magnesium now and that has helped a lot. I also started taking melatonin to help me sleep and that worked wonders. When I was first put on the tamoxifen and had all the bad SE's my doctor did put me on Effexor and that really helped with the hot flashes and it made me a happier person. It is an anti-depressant and before I would have been like "oh no - I do not need that" because I have always been a happy go lucky girl (until cancer). But since my SE's were so bad and my doctor said it would help the SE's and my mood, I thought what the heck. So now I take it daily and like I said, the SE's are much better and my mood is soooo much better. So just some extra info for you ladies who may be going through the same things
I am seeing my oncologist every 6 months now (next apt is Sept) and then I plan to have a complete hysterectomy in Oct/Nov. I am being very aggressive and hoping to not have anymore cancer scares in my future! Hugs to you all and again, I am so glad we all have each other to lean on HUGS - Amy0 -
Hugs Amy and thank you for posting, it's nice to hear from someone who has been on the big T a little longer than yourself.
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I just wonder if there are any studies that look at intensity of SEs and age (or where you are in your hormonal life cycle). I am peri-menopausal at age 54 and just starting Tamoxifen two weeks ago. So my body has already adjusted somewhat to some lower levels of estrogen activity before taking my little white pill. You would just think that somewhere there is info that might help us all manage a difficult transition.
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I've been off Tamoxifen for 6 months now and can say I feel much better. Not back to "normal", but better. I really just wanted to pass on a few things I learned. Tamoxifen can cause lots of changes. One is with eyesight. Get a baseline eye exam before or when you start so you have something to compare to as you go. Tamoxifen can affect your reproductive parts. Get a baseline TVUS so you can make sure your endometrium isn't thickening. It's a known possible SE. Tamoxifen can also cause enlarged uterus and ovarian cysts. All of these things NEED to be monitored on a regular basis and it helps to have a baseline to compare to. As to colonoscopies, all of my doctors say I need one every FIVE years now that I've had BC. The thought is that once you've had a cancer that affects your "reproductive" parts you can get another one of those easier. In other words if you've had ovarian cancer, you're a little more susceptible to breast cancer or endometrial or colon or, for men, prostate cancer. My docs even went so far as to say my dad's prostate cancer was a possible contributor to my BC! I even started seeing a dermatologist on a yearly basis because one thought is Tamoxifen can make you more sensitive to the sun. And crazy as well...I don't have allergies but was told that if I did, Tamoxifen could make them worse!
Anyway, I just wanted to put this all out there. Tamoxifen can really mess with our bodies so being proactive is very important. I made sure to see all the various doctors when I started on it and then continued with my yearly checkups just to keep on top of any changes. That did work for me in one sense as I was one of the ones who had a thickened lining, and enlarged uterus as well as ovarian cysts. Eventually I did a hysterectomy which was probably the best decision I made in all of this! But even then, I have to continue with pap smear because as my Gyn put it..."you still have a vagina, so there's always a chance of vaginal cancer!" (which can really just bum you out!)
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Thanks for the info on Tamoxifen. I started taking this 5 weeks and ago and wanted to join this post. I'm post menopausal by several years and wanted to hear from others that are post menopausal on Tamoxifen regarding side effects. After a couple of weeks taking this medication I skipped one day ((approved through the doctor because of nausea from a sinus infection) and the next day I had slight vaginal bleeding. Has anyone else had this from skipping one pill?
Not sure if it's the Tamoxifen or AL where some of you decided to take a lesser dose by skipping days or cutting pills in half. When I asked the MO about taking less because the Tamoxifen has a long half life of course the answer was--NO you wouldn't get a therapeutic dose. I don't think I'm tolerating this medication very well but if skipping one pill causes bleeding, yikes.
I never had any real bothersome symptoms of menopause going through it or since until taking this medication. Just a little drying that's all. I haven't been sleeping good for 5 weeks now and I'm exhausted during the day. Can't say I really have hot flashes, never had one, but just feel a little warm, having headaches though. My stomach can't tolerate any more pills like for side effects. Not sure what to do.
Just wanted to connect with some of you. Thanks.
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Veeder - oh my god! PLEASE ask your doc what a therapeutic dose is. Ask him to show you the clinical research showing that that dose is indeed therapeutic.
That is a complete load of bullshit. Not get a therapeutic dose, spare me!
NO ONE KNOWS what dose is required. No one knows if some women should get more while others might get by on less. 20 mg a day was arrived at because at 40 mg a day women would rather die than continue on that miserable drug. So they dropped the dose to 20 mg and they got a higher compliance rate. But there was NO RESEARCH DONE into how much tamoxifen was needed to keep cancer from recurring for any given woman.
Your doctor's response is designed to keep him safe from lawsuit and has absolutely NOTHING to do with sound, medical advice. It is most certainly not informed medical advice. It is however what the book says - and the book has some glaring holes in it. You got LEGAL advice. Doctors should not practice law and that's what that was. Covering his own ass. We do know that tamoxifen is effective. We also know that some women get recurrences even while they take it. Then there are women who take it for 5 years and get a recurrence in the 6th year. What we DO NOT know far exceeds what we DO know. But the absolute best therapeutic dose has NEVER BEEN DETERMINED!
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I’ve been where you are Veeder. I can tell you that switching to an AI has made a huge difference for me. Far fewer side effects and the ones that i still have are less severe. Since you’re post menopausal you may want to ask about switching. AIs also offer greater efficacy in risk reductioncompared to tamoxifen in head to head trials.
Before you change your dose, Ask your Dr to test you to see if you're an extensive, intermediate or poor metabolizer of CYP2D. This will tell you how your body metabolizes tamoxifen and if it's efficacy will be negatively impacted. If you're a poor metabolizer, stopping tamoxifen and starting an AI would likely be a better choice for you (if pre-menopausal, shuttling down ovarian function would be required). If you're an intermediate metabolizer, you might want to consider an AI or upping your dose. If you're an extensive metabolizer, all is good in the tamoxifen world. Your dr is covering his butt, but I bet he really feels like he's covering yours too. Docs are all about evidence based medicine. And if there isn't clear evidence otherwise (which there isn't), 20mg is the standard.
There actually have been tamoxifen dosing studies done in more recent years. I'm attaching a link to a write up that looks at several of the most promising studies. Go down to the very last section of the write up and it will give you the final conclusion based on all the data collected (in particular):
“A final question is whether the current study by Decensi et al. (11) is sufficiently compelling to change the standard practice of using 20 mg/day of tamoxifen for breast cancer treatment or risk reduction. Although the results reported by Decensi et al. (11) are provocative, in our opinion these studies should not alter current practice. Although Makris et al. (14) and Chang et al. (16) have demonstrated that a reduction in proliferation in the breast tissue correlates with clinical response, it is not yet clear whether the growth suppression induced by low-dose tamoxifen would produce the approximately 50% reduction in risk of recurrence or risk of primary breast cancer seen with tamoxifen at the standard dose.“
“So, is low-dose tamoxifen useful for the treatment and prevention of breast cancer? Possibly, but for now, clinicians should continue to use tamoxifen at the current standard dose of 20 mg/day.“
https://academic.oup.com/jnci/article/95/11/766/2520250
And this study looks very promising, although only 13 participants);just waiting on results:
https://www.armyofwomen.org/studies/583
If anyone is going to a center where one of these Dr.s are, it might be worth inquiring on the results as I couldn't find them yet but it just might be too soon.
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Lula, you are 100% correct that there are no conclusive studies showing that low dose tamox is effective.
There are also no studies showing that 20mg a day is the best dose. It is the standard dose, but that is NOT THE SAME as the best dose.
20mg a day is what they DO. It seems to work. To assume that it MUST be 20mg to be effective is the wrong conclusion to draw. 20mg is utterly unsupported as the BEST dose. It is a working dose, yes. But the lowest most effective? No. We DO NOT have that information.
I take half a dose knowing I do so without supporting evidence. It is a risk. I feel it is a calculated risk. I will never know. If I get a recurrence and die, some will say it was because I took half a dose. But they will be dead wrong. Since women taking the FULL dose get recurrences. So no one can ever definitively point to low dose tamox as the reason for a recurrence. Maybe the best dose changes woman to woman? We do not know. No one has done much looking.
The assertion that ALL docs work on evidence based medicine assumes that all the evidence is correct, conclusive and current. This assumption is also wrong. When I was in grade 1 the teacher gave us each a blob of mercury to play with. Fascinating stuff. Seemed harmless. Now there would be pandemonium and law suits if grade 1 students were allowed to handle mercury! So what we think we know we later find out was WRONG and bad. Any doc worth his honesty will tell you he prescribes 20mg because that's what it says to do. He has no idea WHY 20mg, just that that's what everyone else does. There is no evidence - just habit.
While these studies are NOT conclusive enough to alter current practice, there is NO EVIDENCE anywhere saying that the current practice is the best. 20mg seems to be the safe bet since we don't know any better. It's a default amount, not a studied amount. So these studies point the finger of doubt at low dose tamoxifen, and rightly so. But they fail to make clear that the 20mg dose should be just as suspect as not being right, because it was not studied either.
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I have been on Tamoxifen for 6 weeks and other than the hot flashes at night, the biggest side effect I've noticed is a thickening in the waist. I lost weight this summer because I had a bmx and felt too crummy to eat much for awhile. I was actually feeling on the "thin" side, lol. I don't even want to get on the scales right now. What does Tamoxifen do to the body that leads to weight gain? Any advice for fighting this? My Oncotype is 19 and my MO said that 95% of his patients with a similar profile to mine choose to take Tamo. I was dead set against it when I thought I had DCIS, then my cancer was reclassified by the Oncotype lab. Seems the hospital pathologist didn't have his readers on when he looked at my tissue after bmx. {eye roll}
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I have not gained weight on Tamoxifen. I need some though. I was tiny before but can’t seem to even get back to my normal weight after all my treatments. Nothing fits me and I can’t really find appropriate clothes in the j7nior section. I know it’s a different issue than most but it is equally as frustrating and actually scary as I have no reserve weight if thing go bad for a while
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Legomaster you are right about being under weight not being healthy for you, Got a friend that struggles with that issue as well, although hers is due to a different disease. Have you tried protein shakes, something body builders would use? I will offer you some of my reserve.
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Thanks for the offer Vampeyes! I would love to make a deal and help us both out if it were possible. I do occasionally drink high protein Boost and Ensure. I drank several a day during active treatment but have not drank as much lately. I even ordered a special Extra high calorie Boost during chemo. I should drink them more consistently or at least mix more protein into my smoothies.0
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Legomaster225- I’m there with you. Much to my surprise, My MO cancelled my Lupron injection yesterday when I mentioned I’ve been having a lot of nausea lately with my hot flashes. I’ve been on both for almost a year now, so wasn’t expecting intensifying SE at this point. But I lost a few more pounds since last time, and I’m thin to begin with, so that may have swayed her.
The only problem with the boost/ ensure is the sugar. I can’t tolerate sugar well since being on Tamoxifen. Not diabetic or anything, just sends the hot flashes into overdrive, which intensified the nausea.
For me, i find it difficult to put on weight eating healthy food, which is mostly what I stick to. I do plenty of pasta and rice too. Meats, peanut butter, yogurt, nothing is off my list. Except excess sugar.
Let me know if you find anything that works!
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Hi Readyabout...I too have gained a middle stomach that I never had before. I was never a skinny girl but I had a nice hour glass figure that always helped me, then I lost my large boobs due to doing the double mastectomy and my implants turning out to be much smaller and my waist has disappeared and I am quite round now where I never had that problem before. I am trying to eat better and walk and all that BUT it definitely came out of nowhere. I am sure some may be due to "early menopause" thanks to the chemo and tamoxifen (although I have had a period twice in the last 3 months). Everything you read says tamox does not make you gain weight...well not sure I believe that lol. So it will be interesting to see what other ladies say!
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For those needing to gain weight - have you tried eating nuts and/or avocado?
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Thanks GoKale. I do snack on nuts a lot. I like avocado, especially in my salads. I should try to eat more of them.
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gokale- (I just harvested kale today 🙂)
I eat peanut butter nearly every day and snack on mixed nuts several times a week. I don’t mind avocado, but I don’t buy it either, not sure what to do with it besides guacamole. I cook with real butter, sprinkle cheese on practically everything.
I know there are a lot of people who’d like to have this problem, but my husband actually asked me the other day if he should be worried about my weight!
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Thank you Runor and Lula73 for your response to my concerns! I was feeling pretty alone with this but now I feel supported. If I didn't have side effects then I would just take it for 5 years as my mom and my aunt both did, they never had recurrences, and they also did just what the doctor ordered back in those days when patients didn't question their doctors.
I have severe osteoporosis so switching to an AL really won't work for me. Plus, at this time I have 2 fractured shoulders from a recent accident which I'm not sure will even heal. But anyways, it is troubling to me that there is no therapeutic dose as my doctor says. I would reduce the dose or skip days if needed except for the fact that after 24 hours off the med of the one pill I skipped I had bleeding. If I wasn't high risk BRAC 2 I would definitely just quit taking it. Frustrating to say the least.
I had another family member who became suicidal after 3 months on Tamoxifen. I spoke with her today and I asked her if she switched to an AL and she said that she is low risk and just decided not to do the anti hormone therapy.
I may try switching the pill to the morning to see if that helps alleviate some of the sleepless nights. I'm pretty much at my wits end with lack of sleep. UGH.
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cpeachy- avocados are great with a little bit of fresh lime juice squeezed over them. There’s a dish at our local Mexican restaurant that’s grilled shrimp and avocado that comes with limes. Delicious. You’ll need to figure out if you like them really ripe and soft or less ripe and firm. #1 recommendation to put on weight? Donuts! Entenmann’s chocolate covered donuts, Dunkin Donuts, and these new donut places that have been popping up all over. Don’t forget a big glass of milk (or better yet a milkshake) to go with them! 🍩🍩🍩🥛🥛🥛
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Veeder- good heavens, woman! You’ve been thru the wringer! How did you break both shoulders at once?!? (You probably posted it and I probably read it and likely responded, but letrozole brain means I can’t recall and I’m sorry.) Can you take curcumin? That helps the joint/muscle pain for me a lot. I take the Solgar brand as it is absorbed faster and has higher bioavailability than curcumin powder. I’m also trying out some CBD oil-just picked it up today so tonight’s my 1st dose. Hoping it will help the pain & stiffness in the mornings, help stabilize mood, and perhaps help a little with sex drive. I’ll let you know how it goes. Have you tried it? I also started popping DH’s melatonin to help with sleep. He asked me to pick it up for him last time he ran out of it and I had no clue what strength he took so I picked up 10mg. I had tried one of his melatonins before and never really entered REM sleep and it was not a good experience. But i was desperate. Turns out the one I tried before and the one he usually took/picked up for himself was 3mg. 10mg really makes a difference. I did look it up and found you can go as high as 30mg if needed. About 45 minutes after taking it I start getting nice and drowsy and just drift off. Warm almond or coconut milk with cinnamon and vanilla before bed also helps with falling asleep and getting a restful sleep.😴 Now if we can just get the hotflashes to stop and the memory restored... At least Im in good company with you and the other ladies here on BCO.😀 I hope you get relief soon. You’re never alone, either. We are just a few keystrokes away.😉
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Veeder, have you tried taking half a pill in the morning and half a pill at night? I have no reason to believe this will help anything other than a wild hope that it might change some little thing and help you feel better?
You should definitely get that bleeding checked out. My periods, which were a terrible affliction that ruled my life, quit 100% without so much as a darkish dribble in the last year. I had a period, same frightful Night Of The Living Dead event that it always was, in July 2017. Started tamox August 2017 and since then, pffft. Nada. Not a thing. My oncologist said after TWO years without a period they would consider me post menopausal, because at this stage my periods might still come back. Good god in heaven, are you serious man? PLeeze tell me that you are joking! The LAST thing I want back is those damn periods! To hell with that shit! Good riddance to bad rubbish! If you were having periods before tamox, you might have break-through bleeding when you skip a dose?
I asked my doc what my improved chances of recurrence were if I switched to an AI and he held his fingers up and made the itty bitty sign and squinted at me. In other words, the improvement was to slight that it might not be worth the stress to my body to change? But, will cross that bridge when I get to it.
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Lula- funny, my daughter says the same thing- donuts. You may have missed the part about needing to avoid sugar though!
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Avoid sugar?!?!?!!!! Blasphemy!!! Please tell me you’re diabetic and that’s why you’re avoiding it.
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Lula73 - I agree with your take on avoiding sugar. I can’t believe how many people say to me “sugar feeds cancer” or makes side effects worse - there is absolutely no proof. Yes, you can find some studies, but I’ve asked the doctors at my top tier cancer center and John Hopkins and both said there is no evidence that this is true. Eat well, exercise, everything in moderation- you know the drill!
When people find out I had Breast cancer some of them point to these studies as if they can pin the blame for the disease on me - you ate too much sugar! Drank too much wine! You drank out of hot water bottles! It used to piss me off - now it makes me sad for them because they just don’t get it.
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I have found the answer for not sleeping through the night: Chamomile Herbal Tea! The past 2 years I have been taking 3mg Melatonin, but wake up around 3-5am. I tried 5mg and the same thing - I do not sleep through the night. The past 3 nights I have a cup of Chamomile Tea (no Melatonin) and by the time I went to bed, I felt sleepy and didn't wake up until morning. It works for me and I hope it will work for you.
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Lula- not diabetic. Never had a problem with sugar before. Took me months to figure out it was the sugar making me feel worse!
VL22- I don’t avoid it because it “feeds cancer”. I avoid it because it makes me feel like crap. I can’t speak for anyone else, just my own experience. I had a piece of birthday cake the other day, because life is for living, right? I ended up spending the rest of the afternoon in the recliner with a fan on me, too ill to get up and make dinner or bring in the laundry from the line. It wasn’t worth how bad I felt after, like I had the flu. Even orange juice can make me miserable!
I don’t know what Tamoxifen plus Lupron does that messes with my sugar, but it does.
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cpeachy- have you ever taken your blood sugar within 2 hours of eating sugar? I’m betting it’s high. High sugar can cause debilitating fatigue. Elevated blood glucose levels have been associated with lupron.
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Lula- no, I would have to borrow someone’s glucose meter though. I did not know that about Lupron. Or maybe I did read that at one time and just forgot? Can’t remember
. Makes sense to me given my experience. Thanks! 0
