Bottle 'o Tamoxifen

Chiarara,

Thank you for your post. Your advice is excellent advice! I had such a tough time with my wrecked sleep after 2 months on Tamoxifen that I am already taking a break from it. I have a trip coming up with a couple of long flights and I am extremely paranoid about developing blood clots......even though my oncologist says the risk is low. Anyway, right or wrong, I decided to take a break until I get back from my trip. I may give Tamoxifen another try after that and incorporate your suggestions as well to see if that helps.

The whole Tamoxifen decision has been a tough one for me......apparently I am low risk for a recurrence, HER- and BRAC-. I talked to my oncologist and my benefit from taking Tamoxifen is a 3-4% benefit. It is a gamble.....hard to decide if the side effects and decreased quality of life are worth the possible benefit.

I am sure many of us warriors are struggling with this issue!

I love having these forums to connect and discuss issues that we are all experiencing. Not a club any of us wanted to be a member of but glad we all have our sisters on here to talk with

I have been on tamoxifen now for nearly 4 years. One thing I have learned is that the only thing I can count on is my own commitment to stay on this drug. What I mean is that after struggling mightily for awhile, I made up my mind that I was going to power through this somehow. It has meant that solutions that worked for awhile may not work forever and so it is important to stay open to making changes in the ways I have coped with tamoxifen. When I first started, my biggest issue was being awakened by night sweats and hot flashes and not being able to go back to sleep. I started taking it in them morning and that reduced the issues with sleep. However, after quite awhile, I started feeling nauseated in the morning and had to start eating breakfast more regularly. THEN, I found that I was feeling so nauseated in the morning that it was getting old. Even eating a light breakfast wasn't doing the trick. So then after like 2 years, I switched to taking it after dinner. The morning nausea is no longer an issue. I have coped with night time hot flashes by wearing very light pjs and keeping a ceiling fan on all night even during the winter. I have tried to fend off the cognitive sluggishness by upping my morning coffee intake. I take a baby aspirin and various supplements and feel like I am hanging in there. My point is just that a person might feel like she has this all figured out but then have to figure it out again (and again, and again). As i said, the only certainty is that I am not going to let side effects prevent me doing all that I can to avoid a recurrence (and lower risk in my other breast). As long as I am in the batter's box and swinging, I am going to come up with some way to stay on this medication.

Trvler, I find there is a correlation between being tired (often caused by tamoxifen side effects that make it hard to sleep) and the diminished brain function. I notice that I am markedly more stupid than usual. When I am tired, the stupid goes off the scale. I have at times literally said to myself, THINK, DAMNIT, THINK!

Most recently I was doing something that required me to add fractions. Inches and fractions of inches. Do you think I could remember how to add fractions? I know how. I knew I knew this and yet ..... just an empty, blank void when I reached into the math part of my brain. I had nothing. Oh my god!

I look far older than I did a year ago. I look much older than my husband and that really bothers me. I hear women who are taken off hormone replacement therapy complain that their nice skin begins to age once they aren't getting those extra hormones. Well imagine how much worse ours ages when the few hormones we might have are denied to us? They say tamoxifen kills your sex drive. Looking like an old paper bag isn't so great for it either. With leg cramps, a dry hoo-hoo, thinning hair (REALLY thinning!!!) and a face like an old purse, I feel about as sexy as mud.

I do manage (so far) to get back to sleep after a sweat attack. But the leg cramps, oh sweet mother of god, I will get them in series, several a night. And then I am AFRAID to go back to sleep because being woken like that is NOT a happy thing!

What is amazing to me is that I am taking 10mg a day. HALF a dose and I still am having side effects!

Hello all my lovely ladies, Quick question for all of you who are further down the tamoxifen road than I am(started taking in December 2017) Have any of you had problems with spleen/liver enlargement or gallstones? The only reason I knew I have these issues is because of digestinal issues I have been having and they are trying to get to the bottom of my tummy problems with a Ultrasound and CT scan. (You know theres a issue when Zija herbal detox tea doesnt do what it is suppose to do) getting upper and lower GI over the next couple of months. I believe around a month ago I had a gallbladder attack where stomach muscles were spasming with diaharea and throwing up (I know TMI) I am kinda feeling like I am falling apart! I eat clean and exercise at least 30 minutes a day 4-5x per week. I am so frustrated!!! Just recently my hot flashes and flushes have became worse, like the infernos of hell have opened up and swallowed me whole! This summer should be interesting!!! I am already on Magnesium trying to keep regular. I drink tons of water, and try to be a good girl, but I am just at my wits end. So thankful that my follow up with MO is coming up on April 9th!!! I have ton of questions. Any imput would greatly be appreciated.

I have elevated liver enzymes and gallstones and have been on tamoxifen since July 2016. My liver enzymes have slowly increased each lab I’ve had since December of 2016. I also had ultrasound and ct that showed the stones and fatty liver. I have chronic insomnia, hair brittle and falls out easier. The big T is the gift that keeps giving

Blownaway, If any of your cold/flu med contained benedryl, that might explain why hot flashes stopped. Benedryl is on the list of med that interfere w/ the effectiveness of tamoxifen.

rhyfelwr- Yes, unfortunately I’m with you. A few weeks back I posted the same question about the chills on this very thread. Several people responded that they had this too. SUCKS! Can’t even sleep because I’m cold no matter what I do. Then the hot flashes come on in between. The only thing I’ve found is that sugar seems to make things worse, so I’ve cut way back. I’m 6 months in and it’s not any better. I leave sweatshirts all over the house, put them on, take them off, ALL day long. Not quitting this though. It’s my insurance policy.

TWills, I am taking 1000MG of magnesium a day for migraine issues, and that doesn't seem to be doing the trick for me with the hot flash problem. I do find that magnesium helps for the migraines, so I am going to keep it up!

Rhyfelwr, Well at least it helps your Migraines:)

Gigibee, the website is www.surgonc.org/resources/models-nomograms/breast-cancer-risk-models

Then, I chose the cancermath.net Breast Cancer Outcome Calculator

It was all easy to use, good thing, after tamoxifen's effects on our brains!

vampeyes---All your breast tissue is never truly gone. My sister's MIL was just diagnosed for the third time! First time she had a double mastectomy and was put on Tamoxifen. She couldn't tolerate it's SEs so she quit. Second time, she found a lump in the tiny bit of tissue close to her underarm. This time they gave her AIs which she quit for the same reason. This time she found the lump just at the bottom of her implants along the ribcage. Unfortunately it had spread so she's just had a port put in and is doing chemo. They are quite optimistic that she will do well and get many more years. When I had my hysterectomy I expressed my happiness with the idea of no more pap smears and my GYN was quick to tell me that would not be the case. He said that first of all I still have a vagina so there's always a risk of vaginal cancer. He then said that even though he took my ovaries as well as cervix that you can't be sure every microscopic scrap of tissue was removed so the risk of those cancers never disappears completely. I'm 3 years out from hysterectomy and still get pap smears. Last one was even suspicious for cancer but it turned out to be a false positive. And I get not only a mammogram on my remaining breast but every 3 years I have an MRI to check my boob and foob thoroughly for cancer as well as checking my implant for leaks. I'm a big believer in being vigilant so I make sure to get all my recommended checkups....including the dreaded colonoscopy since BC give us an increased risk of colon cancer. And I get it every 5 years instead of 10 just as recommended. Tamoxifen helps reduce risk not only of contralateral BC but also distant recurrence.

I've been on Tamoxifen for almost 2 months now and have a few side effects. I am COLD all of the time, no hot flashes just freezing all of the time. The other SE that I can only attribute to Tamoxifen is weight loss. I generally have very little appetite, have to remind myself that I need to eat. I have lost 15 lbs since my BMX on 1/4/18. I know most people gain weight, not me so far although I'm only 2 months in.

Today I was sitting in my clean kitchen, cup of fresh coffee, fire in the furnace, all was well. I bit into my toast made with my wonderful home made bread and as I chewed and looked out over the melting snow I thought, there's too much butter on this toast.

Let me say that again in case you missed it. I thought, there is too much butter on this toast. In what unholy universe is there ever, ever, too much butter?!?!

This is tamoxifen! My love of salty things and sweet things has been destroyed. Used to be I loved a donut and coffee. Now, no thanks to the donut, I can't handle the sweet and I cut back the sugar in my coffee. And then salt. Used to be I loved some good old salty Ripple chips. Now? I can eat a few and then nope, no thanks, done, can't hack the salt. And today, out of the blue, when I was sitting there minding my own business, I get the EVIL and unnatural idea that there can be too much butter ?!

What the hell is wrong with me?! Damn tamoxifen!

Runor- too much butter? Hopefully bacon will not be next on the list

This is great information as my next complaint about the Big T is the hot flashes when I'm sleeping. I think I woke up about 5 times last night boiling hot. Thanks for the tip!