Tamoxifen often causes insomnia/depression. Did they warn you?
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Rubyredslippers, I just love your post. You’ve hit the nail on the head. I too turned down Tamoxifen after I couldn’t take the pain of letrozole any longer. I mean why go from bad to worse? There are so many threads here on the awful sides of Tamoxifen, i think it should be taken off the market. That will never happen. But hopefully in the future we won’t need antihormonals any longer, there will finally be something better.
Where are these bad doctors you refer to? State? Country
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Hey rubyredslipper. You are so right that tamoxifen is dangerous stuff, with only questionable efficacy and a legion of harmful, permanent side effects.
I don't know why lack of full disclosure of everything associated with tamoxifen seems to be forbidden, unless its positive sweetness and light. There is a dark underbelly that never sees the light of day.
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I started Tamoxifen in January. I fought with hot flashes in February, but they seemed to subside to a manageable level after a while. But then around March I noticed that EVERYTHING made me scream at my family and my poor dog, and my mind had stopped working - I was forgetting words and how to do simple, basic tasks. So I stopped the Tamoxifen for about a month. And unfortunately, I am still screaming at people and still forgetting the most basic things. So I've restarted them, because why not. My main problems now are much less sleep and remembering to take the damn things. I was hoping for hot flashes again because I'm cold all the time, but no such luck.
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Wow AliceBastable, that's a mess. Since you are continuing to take the tamoxifen despite the miserable side effects, I hope it gets easier for you.
I couldn't take the way it made me volcanically enraged. I know I frightened my younger daughter. I still feel guilty.
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Its like roid rage. I have my regular MO appointment Thursday, so there will be a discussion. If I remember. But now I don't know if it's all the fault of Tamoxifen, since, if anything, I've gotten slightly less monstrous since restarting them. Still not nice, but less homicidal.
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I did what some people suggest, split the dose, half AM and half PM. Nothing helped. Destroyed my ability to sleep. Found out that's because tamoxifen causes Rapid Depletion of L-Tryptophan ( one of the most important neurotransmitters/amino acids for brain health) That's why they give it in trials to patients experiencing Manic Episodes.
So if you were a regular, UN-Manic person,and were given that hellish tamoxifen, the resulting neurotransmitter imbalances from stealing away a ton of Tryptophan would certainly mess with your brain.
I am really lucky I didn't hurt somebody. I broke my Samsung Tablet, a Cell Phone and my Pressure Cooker Lid. Just smashed them to bits.
Not going to touch that tamoxifen stuff ever, ever again. Life is too short for that level of awaful misery.
. Good luck to you with the "roid rage"
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So glad I happened to find this topic about the side effects of Tamoxifen. Since I had a horrible time with Arimidex (which I could only tolerate for 10 months before I yelled "uncle"), my MO switched me to Letrozole after a one month break. Letrozole caused similar symptoms: joint pain, insomnia, memory loss, achilles tendonitis and recurrence of bilateral carpal tunnel (had bilateral carpal tunnel release surgeries years ago) and hair loss. All SE's are downplayed by MO and office RN's who state symptoms could not be related to drug! Some SE's are unrelenting such as joint pain while others persist for several months and then quiet down for brief intervals. Biggest issue right now is 3 fingers locking on right hand (which is my dominant hand) and effects ability to write.
So the MO offered to switch me to Tamoxifen which I have been resisting due to concerns about related SE's especially uterine Ca. I am so glad I stuck to my guns about not switching to Tamoxifen especially after seeing this topic. My BC experience has been a Murphy's Law: what could go wrong has, so it has not been a bed of roses despite my early stage dx. There has got to be something better to treat this disease.
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I am sorry you have had such bad issues from the AI's affecting your hands. I stopped tamoxifen secondary to so many miserable side effects, and absolutely refuse to even consider an AI. Sounds like you are between a rock and a hard place. You are right, there should be SOMETHING better than the miserable choices of an AI or tamoxifen.
To me its like they are asking us, "Do you want to be burned with fire or super heated steam?" Both are horrific choices that can leave you seriously damaged.
Betrayal, it is so totally wrong the way the bc doctors and nurses pretend the side effects from tamoxifen and AI's are all " in our heads". They must take us for gullible fools.
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I started out on Arimidex because I am post-menopausal. Unfortunately I was osteopenia and Arimidex attacks the bones do my MO switched me to Tamoxifen after one year.
It’s no walk in the park and I can certainly relate to the side effects you ladies are having but I was fortunate mine were manageable. Not easy but manageable. Joint pain and hot flashes were constant.
After my 5th year my MO said I could stop taking it. I had to level off for a month. She didn’t want to risk the possible blood clot side effect because I had one in my leg when I was younger plus my Oncotype score was low so additional years on it would not have benefitted me. What a difference it has made in my life. Still have some joint pain but that’s aging.
I agree there has to be better meds out there. I also resent doctors saying it’s in our heads. Let them try taking it.
Diane
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hey diane- so you did 5 years of
tamoxifin post menopausal?
I am post menopausal with very low
risk of recurrence- i balked at femara
( letrozole) cause I have osteopaenia
so took my first tamoxifin pill -
( 2 months later than I should have -closed my eyes and gave 5 hail mary’s- blood clots scare the hell out of me -)
and here i sit waiting and waiting
for a side effect with none to speak of-
i want so badly to toss them and lay
claim to the “ Well i gave it a shot”-
anyways- your path sounds like my
game plan but wonder if you had any other side effects - i thought
i could have ovary/uterus
removal- imvonstantly checking for bleeding is exhsusting and really probably
overkill- yet i dont find many women
my age with ovaries/uterus on
tamoxifin
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Hi Diane. Glad you got through it all, and are free of those meds.
Cassie, may I ask how old you are, since you referenced people usually not on tamoxifen at that age?
I think if you are young enough to be a regularly menstruating women when you take tamoxifen all hell breaks loose. If you are perimenopausal or nearly in menopause then the severe side effects are not as terrible.
I was young, 46, had regular monthly cycles 5 day long, and it was like being thrown off a cliff, i had such immediate severe vaginal dryness I started to become incontinent almost right away. I remember having this awful accident when I was at the Pike Place Market. I didn't make it to the toilet in time. Pee down my legs, and a puddle on the floor of the toilet stall. I had to drive home in wet clothes. Utter Humiliation.
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Hi Macb04- you are absolutely right!
( from what i have heard) re: side effects
worse in pre menopausal- I am 63
and sppear to be a lone wolf out here.
I appreciate all info but just have
noticed a handful of women in
my situation- ( 60’s- have
ovaries/uterus- on tamoxifin)
seems to me most women get
one or the other taken out- i dont
even want to do that- constantly
have to remind myself that this aint
recovering from a root canal- its
a wily hit and miss, this breast cancer-
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Macb04–how long did you take tamox for? What was your diagnosis? I’m 46 and have been on I for about 6 weeks at half dose, and I desperately want to stop. It decreases my risk of recurrence 4-5%, per my on
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I had a difficult time sleeping from the hot flashes, though I'm not sure if that's from the chemo or tamoxifen.
I find that if I can get the temperature in my room down to 68F I sleep well. If I can't, then if I can get it down to 75F I sleep fairly well if I sleep topless, though lately I've had to wear the surgical bra.
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kec1972, I took tamoxifen for 9 awful months. It was Hell on Earth for me, caused me to have insane rages. Scared my younger daughter with the mad screaming I would do. Felt like I had lost my mind.
Then the trouble sleeping, such trouble falling asleep, staying asleep. The painful ovarian cyst. Hell on Earth
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macb04 what was your diagnosis?
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kec1972 if you want to stop it then do. It’s your choice, not a doctor who couldn’t give a damn about your quality of life. Such a miserably low % benefit isn’t worth it in my opinion. You’ve been told that in all likelihood there is a 96% chance this drug will do nothing but ruin your quality of life and possibly lead to other health problems. I was told 97% chance of nothing but misery for no gain. I’ve refused each time and yes I’ve been treated like human garbage by them in retaliation
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I agree with rubyredslipper, it is up to you to decide when you have had enough. The side effect profile is so very nasty, that only you can weigh the cons versus the pros, and decide if that is a reasonable metric you can live with. You decide, you live with every consequences, not the md's.
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I've been on Tamoxifen for one month and it's very apparent to me my body cannot handle 20 mg - it turns me into a sweaty, crazy, yell machine. Insomnia has not been an issue yet. Right now I am taking 10 mg (with my MO's knowledge), and I do feel a little more like me. Today I practically feel balanced. Listen to your body and stand up for yourself; we need to be our own advocates.
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You are so very right, AC1965, we do need to stand up for ourselves. Only we know our bodies best. No doctor will ever know you more than you know yourself.
It would be one thing if there was an extremely high cure rate, although that is certainly arguable. What is not arguable is 44,000 woman die every year who likely did as instructed by their doctors, and the bc industry, and still didn't survive.
You have to live your life on your own terms, take the med/ don't take the med, up to us, we live with all the side effects.
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I don't rely on docs to give a complete list, or really for a lot of info. This board and google gave me the most details.
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Arista964, I think we need to look things up as much as possible. Unfortunately, in the beginning they hounded and terrified me and gave me such dire warnings to do everything immediately. Made me feel if I didn't obey them, I would die. I remember living with such horrifying, constant fear.
I had some CT, and remember begging the tech for some scrap of info about the result. They looked grim and I remember weeping in terror, telling them my girls were so little, that I couldn't leave them.
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