Bottle 'o Tamoxifen

2FUN, your childhood friend sounds like a solid, sensible person. That is some excellent guidance! Move forward, collect information, make a decision. Yes!

I say we throat punch them in the nuts with our trucks! (My friend says that all the time. If it’s about a girl I say... but I don’t have nuts. He always laughs and then says, well ya don’t have boobs either and that isn’t stoppin’ ya) 😉

Choices, choices... I choose Appalachian Apple Pie Moonshine. AND a nap!

I’ve been having seriously HOT hot flashes. I don’t know if it’s because I’ve been so active or if it’s because it’s summer or if it’s a normal Tamoxifen SE but they have gotten ridiculous. And I sweat a LOT more than I used to. If I could, I’d be in the shower 3 or 4 times a day. I feel so gross. Dang cance

Molliefish, I will be honest and say I felt somewhat kicked in the kooch by your response. It sounded a lot like blame the victim. I don't disagree with you about choices. But I just don't see that it's applicable when I am saying that I am feeling down over this development even though I have been trying really hard to not let it get to me. It just did. I put up a fight, but the depression won. It didn't stop me from doing the pee tests. It won't stop me from having the ultrasounds. I can choose how I act in spite of how I feel and I am making the choice to investigate instead of refusing all tests, closing the drapes and taking the phone off the hook. I can feel depressed and still gather information, move forward and then make a decision. You can feel like crap and choose to do what you have to ... that's what I am trying to do. On my good days, I agree, there are many ways we can choose to see a situation. I just wasn't having a good day.

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.

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 - Amy

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.

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.

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.

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}

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.

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!

For those needing to gain weight - have you tried eating nuts and/or avocado?

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!

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! 🍩🍩🍩🥛🥛🥛

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.