Bottle o Tamoxifen
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runor--I've posted this before so sorry for repeating but I felt the same way as you did when I went off Tamoxifen. Fortunately I have a great MO who offered some good advice. He said to treat it like AA....one day at a time. He even went so far as to refill me a 30 day script and told me to set it on my counter with my other supplements. That way if I was feeling particularly anxious, I could just pop a pill. Wouldn't do me any harm but wouldn't help either according to the BCI test but who knows for sure?! So I did. And I never needed to take a pill but just knowing I could was enough. (Funny enough, I'm the same way with food. I love junk food so I keep small portions around. Knowing I COULD eat it if I wanted to is enough for me!) Anyway, if your brain works this way, then it might be a good way for you to go off Tamoxifen. After about 2 or 3 weeks I realized I had quit thinking about it. Now I'm 3 years from quitting and I never give it a moment's thought.
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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!
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Hi TrmTab, Congrats on almost being done!! Can you see your PCP for blood work? My 1st MO didn't do any labs unless you were on chemo so my PCP took over that part. My new MO does routine labs. Everyone seems to do things differently. Good luck to you!
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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.0
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Hi molliefish, Congrats on finishing Tamoxifen!! Being on rotation or shift work when I was working always messed me up! That wine tasted good after a 12 hour shift or coming home at midnight. I'm going for a haircut today. My hair hasn't been this long since I was in high school and I'm liking the grey. Hopefully we are turning the corner and things will start returning to normal. Best wishes.
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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.0 -
Molliefish, I need to adopt your zen. I need to be at peace. I need to be what will be. I need to hang out with you and drink too much wine. Well, coffee, since I prefer it to wine.
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It will come. I believe. I like coffee too... dark roast one Cream. ☕️0
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Hi all - like a number of other posters, I'm struggling through the first few months of tamoxifen. At first, I had horrible headaches. Then depression. Now hot flashes and really severe insomnia (I'm 38 so I'm not sure if it's hitting me harder).
(1) Has anyone had good success with any med for insomnia? I've tried trazodone, but that gave me such severe dry mouth/throat that I thought I was choking in the middle of the night. I've also had really mixed luck with melatonin. That helps me get to sleep, but I feel wide awake at 2 AM.
(2) Has anyone tried Atarax (hydroxyzine)? My oncologist suggested that it would be OK to help with sleep, but I'm a little concerned that it seems to be a CYP2D6 inhibitor (albeit a weak one).
(3) Any luck with antidepressants? Lexapro doesn't work for me, and drugs like Paxil and Wellbutrin are obviously off-the-table due to the CYP2D6 issue. I was thinking about asking to try mirtazapine, but that seems to have some tough side effects too.
Thanks in advance for any guidance that anyone can provide. I'm continue to plod through with my daily doses, but the severe insomnia is particularly tough!
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My MO prescribed Gabapentin to dampen the hot flashes. Since my insomnia was related to night sweats this has helped me tremendously.
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I'm not sure what does you are doing, but for me doing 10mg in the AM and PM helped.
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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
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ariva, Ambien works for me for insomnia. Also another antidepressant you can try is Viibryd. It's a newer type of SSRI and serotonin receptor agonist.
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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!
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cdw2020, when I first started taking Tamoxifen 11 months ago, my joints popped quite a bit. They still do, but to a much lesser extent. I have more muscle pain and stiffness than bone pain, but one thing that seems to have helped decrease some of my side effects is dividing my dose. I take 10mg in the morning and 10mg at night. I know others on this site have also had some success with taking a divided dose. I can’t say that the side effects have gone away, they are just not as bothersome.
One thing that I have found is that the various side effects will vary in their intensity over time. Just when I thought I couldn’t put up with my stiff and painful feet and ankles every morning, that problem disappeared, but a new one popped up. That also got better after a couple of months, while other side effects persist. I can’t say I’m happy with the way I feel, but I’m managing.
I hope that perhaps after an adjustment period, you will find the Tamoxifen to be tolerable. Good luck!
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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.0 -
runor - So well stated re: how things arrived to the 20 mg dose. Great background! For similar reasons, and recent research (studies cited below) and the fact that my father who is a retired oncologist recommended it and my oncologist agreed, I'm on a 10mg dose and have been all this time. And I just received a clear mammogram a couple weeks ago, 2-1/2 years into this fight! So that's the good news. Plus, I have not had the joint paint or hot flashes that people mention. I did have nausea in the first couple weeks but it went away, I think once my body adjusted to tamoxifen. And it took 6 months before my body went back to a regular cycle (yes I still get that time of month, I'm pre-menopausal).
That said, I think I am experiences two very significant side effects and was wondering if others have experienced this or not?
1. I gained massive weight on tamoxifen and can't seem to lose weight no matter what I do. Keep in mind, I got really disciplined and lost 30 lbs. after being diagnosed with breast cancer, throughout radiation treatment and so on. And it stayed off until I started taking tamoxifen. Then, not only did those 30 lbs. come back super fast, but now when I do the things that worked for me before in losing weight, I can't lose weight. So now I'm concerned because obesity is also linked to cancer but tamoxifen causes weight gain but its supposed to be preventing a recurrence and so I keep thinking I can do both, stay on tamoxifen and figure a path to lose weight, but it's hard. Any advice? Other stories? Has anyone been able to lose weight on tamoxifen and how?
2. I broke my toe earlier this year. This is a big deal because I've never had a broken bone in my entire life. And all I did was stub my toe. I read how in pre-menopausal women, tamoxifen is actually deleterious to bone health instead of helping, so now I'm worried that I have weaker bone strength. My husband keeps assuring me that it's just a fluke and I can't link it to tamoxifen and he and my parents and sister and family all want me to keep taking tamoxifen, so I keep taking it since it seems these SEs are minor in comparison to SEs others have had. But sometimes I wonder if I should continue on it...
For now I'm staying on tamoxifen. But I do wonder if I should stick it out through the 5 years or pause it for a period to see if I can lose weight and then resume?
Here are the articles on 10mg vs. 20 mg does - not a lot of studies yet but I think more will pop up...
https://www.everydayhealth.com/breast-cancer/lower...
https://www.breastcancer.org/research-news/low-dos...
http://www.theoncologynurse.com/breast-cancer/1768...
https://www.webmd.com/breast-cancer/news/20181206/...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC19768...
Pebbles
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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.
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Rah2464 - thx! I will look into getting the DEXA scan. If only we could trade on the weight gain / weight loss LOL... interesting that you had the opposite effect.
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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.
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Oh gosh runor, I loved your description! I just tried two different drugs and decided to stop because I am not willing to feel like shit on a stick for 5 years. I am fully accepting my recurrence risk is a few % points higher because of that and have decided I am willing to make that trade off.
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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.
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so.. I took Tamoxifen for 2 months. Was good in the beginning and than came headaches , low energy and last week shortness of breath and of course weight gain, about 12 pounds sitting on my belly.
Called my Onco and going tomorrow for blood work. She took me of it. I can tolerate a lot but the weight gain low energy are a killer. I did try Letrozol first but retain fluid. I guess she’ll try another pill but hormones blockers create similar menopause state in the body and weight gain comes with it. However I fought it than and don’t want to do it all over again after 7 years. I’m 59 soon and the last week I felt like I’m 100 years old.leaning towards the decision to stop all pills and take my chances
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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.
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runor, I am so sorry to hear about what happened to you last evening. I remember reading a post by Celand that sounds similar to what you are going through. I don't know why they are assuming you are postmenopausal. Maybe your Gyn or MO can help with this. The doctor couldn't have been more tactless. Thinking of you.
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Runor
Please do not freak out. I had uterine cancer in 2014, and yes with lots of unexpected blood. I was age 63. Had full hysterectomy along with all the related parts. Stage 1A, so no radiation. I found the uterine cancer journey was less aggravating than the breast cancer for which I was diagnosed with in 2020 (Stage 1) and now this darned tamoxifen which has too many side effects for me but I keep trying. If you want to message me, feel free to do so. Hugs Carol
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Runor, in your pocket for the upcoming "tests and procedures". Hoping for benign findings.
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Hey Runor- I check this thread from time to time
as i am also on tamoxifin and older -
( stage 1 IDC- 2019- lumpectomy,radiation
tamoxifin)- Your post is shocking- I am so sorry
you are going through this- It reminded me of the
day i told a friend about my cancer- She was
64 at the time and told me of an episode
similar to yours- At no time did her doctor
tell her it “ was cancer until proven otherwise”-
In fact, she told me she was having
an ultrasound the next day and that a fibroid
was suspected- which it was. I dont understand
how your doctor could say this - its very shocking
in addition to the physical trauma you were experiencing- You must have some hope and
know all possibilities / causes- I had alot of bright
blood in my urine 6 months ago and went in to
a panic- My doctor told me the 3 scenarios
that could cause this- ( kidney stone, bladder
stone, cancer)- altho she stressed cancer unlikely.
...so i had an ultrasound and interior scope ( bladder video) done and strangely didnt fit
any cause - the urologist told me it may have
been an unnoticeable stone - passed -its not
unheard of to have this with no vlear cut cause-
In any case, i say all this becsuse as hard as
it may seem - realize that its not assumed
you have cancer and i wish the doctor didnt say
that to you- our minds go to the worst place-
thinking of you- the week ahead will give
you some answers-
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Runor I am sorry the attending doctor immediately "went there". I had extremely heavy bleeding for 40 DAYS on my first year of Tamoxifen without it being cancer. Your hormones may just be gyrating and giving you a last gasp before menopause, you may have a fibroid that is an issue, or yes it could be something more nefarious. Of course you will get everything checked out and I am hoping that was your pre-menopausal swan song. Please keep us updated. So sorry you are having to go through this Sister! Sending you hugs and saying prayers
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Also in your pocket for these tests (um . . . shirt pocket please
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