Bottle 'o Tamoxifen

After going through months of dizziness and nausea a few months after starting Tamoxifen, I complained to a couple of my doctors. They told me that Tamoxifen was dehydrating and that I needed to drink lots more(like more than normal) water. Once I upped my water, it all stopped. The doctors said that the dehydrating effects of Tamoxifen tend to be the same as you would experience when you are dehydrated from overwork or being too hot so liquids are the answer. Seems they were right!

Has anyone experienced eye twitching with Tamoxifen. I started taking the beginning of November. I can't sleep without waking up 4 or 5 times, my weight is out of control. Im very hopeful but my doctors seem to ignore most of my symptoms

Trmtab - how are you feeling about going off the Big T? I hated going on. I hate how it makes me feel and what it has done to me (hair falling out, body like a beluga whale, aching joints, vagina like a tumble weed, no sex drive, feel homicidal lots of the time) yet I worry that when the doc tells me I'm done I'll feel very vulnerable and like I have a big target on my back. I know in truth every single one of us is at risk 100% of the time from uncountable life threats, many that we are unaware of or don't bother thinking about. So on a philosophical level I know that it is silly to freak out over going off tamoxifen. Yet... I feel a niggling sense of worry steadily growing. It's stupid. I know this.

Hi runor

I don't actually stop the T until May, but I have only been seeing the MO once every 6 months, so next appointment would be Sept and he said he didn't need to see me once off the meds. Due to some stops along the way for surgeries, I do have more pills on hand/refills still at the pharmacy so go until nearly the end of the summer. I think I will use up all the pills before stopping, not simply stop at a designated day in May...but it is tempting as I have all the side effects you mentioned.

My MO is very casual, too casual for me actually. When I switched from Arimedix to T he stopped doing any blood work...even though one of the reasons for the switch were irregularities in some blood measures due to Arimedix, shouldn't he have kept taking blood to see if they improved? I did ask but he dismissed it. Nice guy, but as a DCIS diagnosis, his thought was I didn't really have a significant cancer and his time was better spent elsewhere. Somehow 5 surgeries and 5 years on oral chemo meds seems like if I didn't have something, why did we do all this!

I stopped taking tam the day my doc said I could. I still have 10 or 15 tabs here. I’ve never looked back. that was in Nov 2020. I have had some increased hot flashes and adrenaline rushes. Usually in the middle of the night. My hair stopped falling out after a recurrence of excessive shedding in January. I’ve been in a lockdown zone since Nov also so my hair is a fine mix of my natural sparkly grey/dark brown and my long standing auburnish bottle hair colour. So the hair colour will change if I ever get back to the salon. My skin is still dry, I still sleep like shit but I also just started anew on call rotation and realize I probably (did) drink too much wine. I’m feeling better for not drinking so another bad habit changed.I am at peace. What will be will be.

Millie fish,

I went back on Tamoxifen. I had finished my 5 years in November. My Oncologist was ok with me stopping it. I was uncomfortable being done. It is my only insurance policy from the beast. When we checked my hormones while on T it showed that I was menopausal. My Onc said that those results were unreliable due to the fact I was on T. Checked my hormones 3 months off of T and my Estrodiol was in the normal range, so not in menopause. I haven’t had a period since Sept 2015. With normal Estrogen I have decided to take T for 2 more years. 5 years went fast so I’m guessing 2 more is nothing. My side effects have been minimal. Mostly hot flashes and trouble sleeping.

It will come. I believe. I like coffee too... dark roast one Cream. ☕️

My MO prescribed Gabapentin to dampen the hot flashes. Since my insomnia was related to night sweats this has helped me tremendously.

Hi;

I stopped Tamoxifen this Aug after being on (and off for follow-up surgeries) for 3 years. I tried. I really tried to stick it out, but I couldn't tolerate it. I could get through all the irritations like bone pain (went away after a 3 or 4 months); headaches, dryness, increased insomnia, amongst other SE. But the fatigue and depression, along with hair loss, made it untenable. I'm back on my pre-breast cancer meds and starting to lift. Trying to be ok w the possibility of recurrence and my decision - along w my Onc - to stop for awhile. Maybe I'll try a half dose after I've been off for a year? I chase my tail around and around...

Thanks for reading

I am 42 and have been on tamoxifen for about a month. The aches and pains have really intensified this past week and all my bones are popping. Everything from my neck and spine to my knees and ankles. Has anyone had this pain and popping happen? I am also on my 4th of 13 herceptin infusions next week. Any insight or suggestionswould be greatly appreciated. Thank you!

Bluesky. The thing with the 20mg dose of tamox is that the dose was not arrived at because it was studied and found to be the dose that kept the most women from having a recurrence. Don't take my word for it. Search the net and search some more and see where you can find clinical trials that tested 20 mg or less to determine the most effective dose level. You will not find them. They were never done. They do not exist.

What WAS discovered is that tamox makes so many women feel so miserable that it had a high drop-out rate. Women would quit the damn drug and take their chances with a recurrence rather than feel that shitty for 5 or 10 years. So the dose was dropped from 60mg a day to 40 mg a day to 20 mg and at 20mg it seemed that more women stayed on the drug for longer periods. So that was the set point. At 20 mgs a day MOST women will tough it out for 5 years. But be clear. Be very, very clear. That IS NOT THE SAME as saying, we have tested this drug 6 ways from Sunday and we know for a fact that it MUST be 20mg a day or women will drop like flies. No. The 20mg dose is the most tolerated so far, and that's where it ended. Not the best, the most tolerated.

Knowing this I did not ask my onc if it was okay to take half a dose. I told him that is what I was doing. I asked him to show me the proof that it must be 20mg a day or I was toast. He could not show me the research. He admitted that it has never been done. The norm, the protocol is 20mg a day. But there is no hard evidence to say that it works any better than 10mg might. Or even 5mg. That research is absolutely not done and never will be. So women are tossed into the 20mg end of the pool to sink or swim when maybe, just maybe, a reduction in dose would make it more tolerable and maybe they would increase their chances of reducing recurrence by staying on a reduced dose for 5 years instead of quitting after 2 or 3.

On Sunday and Wednesday I take a full 20mg. On the other days I take 10 mg. This is a little more than 50% dose. More like 65%.  On this reduced dose I have had every side effect everyone else has and even some that I don't see mentioned a lot, sun toxicity. I burn. In minutes. Only it's not a burn. No one burns in Canada in March on an overcast day. But I do. It's like my skin breaks out in a billion tiny blood blisters when exposed to the sun. It's not painful or itchy. It's not a sunburn. But it's lobster red and very alarming. BUt my point is that a reduction in dose does not always correlate with a reduction in side effects. (I hate he word side effect, these are outright effects, nothing side about them!) BUt I would urge you to consider reducing your dose. It can do not harm to try, no worse than what you already experienced. Maybe take half a tablet every other day. The point is, you do not have to go all or nothing with tamoxifen. If you would feel better having some of it in your system rather than none,  you are free to customize your dose regime and schedule and you do NOT need your oncs blessing to do this. He might say you're putting yourself at risk. But he can't actually back that claim up with scientific proof. Lower doses might be equally effective - we just don't know. He just wants you to follow the rules because they are the rules and that's what the book says to do so we must do what the book says. No. We actually don't.  So do consider that you can take one tablet a week and up it to two a week if you want. We do know that tamoxifen is effective (albeit miserable) and my thinking is that some is better than none. I wanted to not die of this damn disease, but I was not willing to feel like shit on a stick for 5 years. So I mostly half dose. Still feel like shit on a stick. But I am used to the shit. If you want to experiment, do it.

PebblesV I cannot speak to the weight gain issue, I have actually the opposite problem. Although I have been able to gain about five of the 15 lbs I need back once I started dosing twice a day at 10 mg.

As to the bone health - please go get a Dexa scan. I, too, was premenopausal on Tamoxifen. I lost significant bone mass in the first two years on the drug, enough to put me into osteoporosis. In fact, today, I have my first Reclast infusion and so not looking forward to it. My Onc says she has had only a handful of patients on T that have experienced my issue. I am very hopeful since you are experiencing the opposite of me in the weight gain that your bones are fine but you are wise to question and check things out. In fact, I think all women who start these drugs should have that baseline upon starting, then a followup Dexa scan a year later instead of waiting two years.

Pebbles, oh yeah, the weight gain! For me it's mostly been gut gain. It's like I'm growing a pig around my middle. All gut, no ass, I can't keep my pants on. This sounds funny but is a serious problem. I schlepp around with serious plumber butt, my pants slung below my bulging gut. I contemplate suspenders. I hate myself. I look awful and avoid people because I am ashamed. 

Unlike you, tamox stopped my periods dead in their tracks. Horrible, menacing, brutal, uncontainable, disasters. They ruled my life. I had a period July 2017 started tamox August 2017 and that ended it. Instantly. No more periods. Not even a hint or suggestion of a period. When I went off tamox for a week  I had some bleeding about a week after and I was like OH  HELL NO!!! If I go off tamox in 2022 some time and get my periods back, I will lose my frickin mind! I was 53 at diagnosis and showing no signs of menopause. Tamox dumped ALL of them on me and stopped my periods dead in their tracks. That is the ONLY good thing I can say about the last few years on tamox.

runor does have a way with words--that phrase "growing a pig around my middle" made me giggle a little bit.

BCat40, I only tried one (tamoxifen) and I noped out of that one. I accept that I've increased my risk of recurrence. I hope it doesn't happen but if it does, this is a decision I made and I will deal with that then.

Tamox stopped my periods August 2017. Last night I began to hemorrhage. I cannot describe the volume of blood any other way. I had been having terrible back pain all day, thought I might have kidney stones. Began to feel nauseated from pain as the day went on. Then just after dinner the flood gates opened and my uterus made up for not having a period for the last 4 years. It was uncontainable. Even my husband screamed when he came in the bathroom to find me wiping blood off the floor , toilet and myself. It was unbelievable. So off to the hospital we went. Not cause I wanted to, what were they going to do, cauterize my vagina? No. But the nurse advisor said to go  (pain + nausea + abnormal bleeding = trip to hospital). I was there from 10 until 1:30 a.m. waiting to see someone. I took clean pants, panties and pads with me. It was insane. 

Doc said, any postmenopausal bleeding is considered uterine cancer until proven otherwise. 

I fell apart. I had actually fallen apart earlier when the blood started. But this was conformation. Cancer is not done with me yet.

But...am I postmenopausal? I told her I might not have gone through menopause. She said, well if your periods stopped you've been through menopause. The only reason my periods stopped was because I took tamoxifen. It suppresses my hormones. But does this mean that biologically and medically I have gone through menopause? Because until the day I took tamoxifen, I was full steam ahead with regular periods. No sign at all that I was even close to menopause. I was supposed to have a blood test to determine my hormones but due to covid that didn't happen. So...once I'm off tamox will my body may bounce back into periods? Oh. My. God. If this, what happened last evening and through the night, out of bed every 15 minutes, sleeping on a towel and still bleeding into the sheets...oh hell no. Or it's uterine cancer. I am trying not to freak out, but I am. Tests and procedures to follow. I hate this.