Member
Posts: 47
Registered: ‎14-03-2015

Re: Tamoxifen and side effects after completing 5 years

Hi, firstly congratulations on doing 9 yrs with crappy side effects: that's a real feat! I did 5 and my once wants me to do another 5 but I said 'nooooo' as it sounds like we had the same side effects. I weaned off. I got a period within a month. I had even worse mood: depressive after stopping but I'm feeling better now (at 2.5 months). The thing I noticed within 2 wks was my fingernails. I got an opaque band of new growth rather than weak nails. I've got my periods back and my old pain cycle / mood swings returning. My short term memory has not yet improved, but I can deal with more information. Gynae symptoms improving but I think will take a while: I lost all internal texture but that's coming back and I feel so happy about that as it feels like there's hope. Those symptoms of tamoxifen were a real rip off. I've also started getting physical strength back. I did weights but was losing muscle now it's building back up. Hope all else improves but give it some time. Well done again and I'm sorry it had such an impact. Hope you find yourself a lovely partner, mine stayed with me despite all of the side effects. Xo
Member
Posts: 16
Registered: ‎22-01-2018

Re: Tamoxifen and side effects after completing 5 years

BTW....my doc says..."there are No side effects as you go off this drug...blasphemy!!!!! I know there is....I am feeling them .! How can there Not Be!? Makes me unsettled, for lack of better words.9 years on ANY drug,then stopping,Will have side effects!....aghhhhhh
Member
Posts: 16
Registered: ‎22-01-2018

Re: Tamoxifen and side effects after completing 5 years

Finished 9 yr therapy on tamoxifen.My body has had enough.. Initially have 1 more yr. to go...but I do not want anymore..am sick daily..achy, fatigue ,nauseated ,weak...

All of it is not good..so since Wednesday , I Am now off the drug....I have 0 appetite...TIRED, very nauseated, tremors, heart palpitations, nervousness,emotional, vag. dryness..achy, dizzy,eyes are blurry....must I go on?And this is only day 5 of being off 20 mg.tamoxifen.....am praying hard and keeping the faith and staying positive...life can only get better....lost a good man to this drug..
No sex -no man. Frustrated and lonely.Bittersweet is what I call it....I pray for all whom are going through this... Smiley Sad Will keep you all updated..
I thank God everyday for all my blessings and pray for all who are in this battle..xo sending much love,light,and healing to all.
Member
Posts: 1
Registered: ‎28-01-2018

Re: Tamoxifen and side effects after completing 5 years

Hi first of all, good for you giving yourself permission to decide! Your words could have been written by me in 1997. I hope that gives you a bit of encouragement.  I was diagnosed in '95 after 5 (yes five!) Years back and forth to my gp ,  with a slow growing breast lump. Christmas '94 I was assessed by different Dr who who fast referred me to big hospital. All hell broke loose. Can't remember stage or grade of oestrogen receptive tumour now, but it was in my axillary lymph nodes too. 3 surgeries later and massive post open infection, looked like maggots coming out the insision line, I was banged on antibiotics and Tamoxifen. When the infection cleared I commenced chemotherapy, followed by radiotherapy. Two years later the treatments continued. When I was first diagnosed, I was told Tamoxifen for life. By the time I finished chemo' I was told the guidelines has changed, it would be 10yrs. By the time I ended the radiotherapy it had changed again, to 5yrs of Tamoxifen. Which indeed it was. Side effects were hellish and I don't think I would have carried on taking it much longer. Bone pain. Sweating. Tremor, dry mouth, dry vagina and no sex drive at all. Once off it, all the side effects had disappeared except dry vagina. My husband up and left for a younger woman. He didn't like my breasts and lack of interest in sex. (Yes he was and still is a selfish idiot lol) BUT here I am, 2018 happy, healthy, fit and only ever think about brs cancer when my routine mammogram comes  around (next week). I guess what I am saying is, keep positive ...It did not matter what was thrown at me.... Eat healthy. Get exercise. Talk to your friends about what's going on. Don't overwhelm them with too much info, but do share your feelings. I cannot advise you whether to stop or continue tamoxifen, but I can strongly suggest you check the current UK guidance on how long it should be taken for. Also, write to the drug manufacturer team. I did and got a very long questionnaire to complete. They need feedback to continue research. I do feel for you, but be positive. Here's me 20 odd years later, still dry vagina, but that's treated with occasional  Vagifem on prescription (oncologist said it was ok) and feeling 100% better about myself. Still got one breast 4" bigger than the other, but I don't care. Written with love to all who are my cancer cohort x sorry for typos hope this makes sense.

Member
Posts: 16
Registered: ‎22-01-2018

Re: Tamoxifen and side effects after completing 5 years

Read my short story.. best regards. Silverraynefox xo
Member
Posts: 16
Registered: ‎22-01-2018

Re: Tamoxifen and side effects after completing 5 years

[ Edited ]

I am on my 9th year of Tamoxifen 20 mg... today i decided to go off of this drug. My body has had enough... bones ache, tingling in hands feet legs and back, swelling of arms and legs..am achy and in pain every day.. major brain fog.. dizziness ,depressed, and no drive or goals.. sex life.. do not have one.. because of the vaginal dryness.my skin is aging faster than it ever has.. (am 52), and emotional, mood swings, hot flashes, insomnia, fatigued!!! and am losing weight ..9 years is enough. I had full chemo and radiation was stage 1b er with fast spreading cancer.. was taking chemo treatments  within less than a week. Completed those and then radiation for MANY days.. which i got radiation burn .. my breast area was all green and pus filled, and i warned the radiologist i was burning and they made me come back anyway.. i gave them heads up about it when i first started feeling it wasn't "right".. they continued...i was septic after all that trauma.. as though my body had not had enough torture..so i got pissed off and wnet to my oncologist.. oh , he was not HAPPY with them in radiology, nor was I!!! So i was prescribed an ointment for my burn, as well as antibiotics which burn victims use .. so was real burned.. and sick! Smiley Sad  IT IS HELL! All of it..... I am grateful i am in remission thus far... I pray for all to be healed whom are going  through this .. Now to find out what the withdrawals are going to be.  AM staying positive and will fight til i am off completely.  Godbless ALL who are battling this cruel disease. <3

Member
Posts: 47
Registered: ‎14-03-2015

Re: Tamoxifen and side effects after completing 5 years

Oops, I meant 95% not 100% at 5 yrs of the way towards the total benefit if you went to ten yrs on it.
Member
Posts: 47
Registered: ‎14-03-2015

Re: Tamoxifen and side effects after completing 5 years

Ah, Mirror Mirror, I really feel for you and relate (except the hair loss). I say this very cautiously and in response to you, my surgeon (also who headed a large clinic) pulled me aside before my 5 yr review and said you'll be told to go ten years and I know you have really struggled. He said at yr 5 (of 10) the benefit is about 100% and at the 4 mark about 90%. The San Antonio (2017) starts the next few days so it may update the Atlas trial (eg, 5v10 yrs tamoxifen results at yr 15. At 10 it did show a benefit at 10 but it wasn't huge. And then there's what's called a subgroup analysis: eg some get more benefit that others. The best you can do is get as much info from your oncologist about their assessment of your risks. My surgeon had weighed that up and for me it wasn't worth it. My onc (whose also a lead international researcher) wants me to stay on it. The reality as you say is tamoxifen gives a good benefit, for me it was about 40% reduction of my 15% risk at 10 yrs. Another 2% gain is not worth it for me and as you say, it's no guarantee. I'm glad I made it but it's been a huge struggle. The last 6 months was a real struggle and I had the last tablet last night and cried. I'm already noticing a difference (as weaned down to 25%) particularly energy but it's possible I'm premenopausal, but my working memory and emotional control is totally rooted. I did start a new relationship a yr in, but it's been very hard. I will continue to post over the next wks/months. My biggest advice for managing is to get heaps of exercise and challenge yourself to feel good and as strong as you can and there's lots of solid evidence on its impact of reducing a recurrance. Try not give up on finding someone if that's what you want. Xo
Member
Posts: 2
Registered: ‎27-11-2017

Re: Tamoxifen and side effects after completing 5 years

hi im new here and am not sure i put my response to you in the right place, i hope you can see it, it looks like it’s at the top of the thread
Member
Posts: 2
Registered: ‎27-11-2017

Re: Tamoxifen and side effects after completing 5 years

hello sweetpea - im 52 and have been on tamoxifen about 4.5 years now. i was stage 2b er+ i had lumpectomy, full chemo, and radiation. i had all the typical nasty symptoms ... depression, weight gain, mood swings, menopause (although that could have been from the chemo), foot and leg cramps, nasty pelvic bone pain, hot flashes, old looking skin all over my body, no libido, and in general feeling 25 years older than i did 3 years ago.
my latest symptom or maybe its been all along but only now has come to my attention is androgenic alopecia. i make a ponytail and it feels like half my hair is already gone. my dr said whats gone is gone but maybe i can fight to save what i have so i’ve been on biotin, biosil, and am applying minoxidil for the last few months but none of it is helping.
you would think with all the other symptoms, i could just soldier on. but i really resent this last kick in the pants. that my vagina feels as dry like a bundle of twigs is a secret i can keep to myself, but losing my hair is public and just too much. i dont have children or any other surviving relatives so life is lonely enough. i’ve been fighting to keep the hope of finding a new mate even with all the strikes against me, but if i end up bald, well, my odds would tank even further and im pretty sure i’d rather give up than subject myself to the world of dating in new york city (where i live).

please forgive this long winded story, its not often i talk about any of this.

so here’s where i am now. im thinking of stopping the tamoxifen since im nearly at the 5 year mark. i know they said to take it 10 years but i’m still tempted. i dont want to be bald, neutered, depressed and alone. that said, i’m also scared to gamble with my health.

its even harder to decide when i think that i could keep taking the tamoxifen and still have recurrence anyway.

or that life wouldnt even be any better if i stopped. does life improve going off it? i’d be willing to wait out the withdrawal part if there were a light at the end of the tunnel.

even more confusing is that i’m seeing in some forums that some women actually get androgenic alopecia as a result of stopping the tam. so im even scared it could worsen the problem if i stop.
do ANY of the QOL symptoms subside?

you’ve been of for a little while now, how are you feeling now that some time has passed being off? would you do it again if you could turn back the clock?

i really, really appreciate your advice and am sorry to ask so many questions. its just so hard to know which road to choose.
Member
Posts: 47
Registered: ‎14-03-2015

Re: Tamoxifen and side effects after completing 5 years

...and not sure why a 'u-nick' comes up as a ***bleep**. Ha, ha!!
Member
Posts: 47
Registered: ‎14-03-2015

Re: Tamoxifen and side effects after completing 5 years

Just updating in case it's useful to someone in the future seeking info. I'm now in my last wk (weaning myself off and now on 25%, because I'm sensitive and figured that it made sense). I'm 46. Supposedly premen but no periods in 5 yrs. I know a lot of you ladies are older, so my situation different and it's been five yrs of really struggling (no idea how you managed ten). (No chemo/ but Zoladex for 2+), very hard to find info from women like myself. So far, I've noticed depressive mood, (but I'm just observing it and feeling better the last days), soreness in feet has really decreased, oiliness in hair returning slightly), increased strength in my arms, no cognitive improvements yet, but I'm not off it yet. I'm sorry to hear you older ladies struggling, I'm praying I get a few yrs of feeling like a woman rather than a **bleep**. Wishing you all well.
Member
Posts: 1,475
Registered: ‎01-05-2012

Re: Tamoxifen and side effects after completing 5 years

I finished 10 years five weeks ago.  I've definitely been quite moody since, been struggling more than usual to get up in the mornings, and have generally felt quite lethargic - not like me at all.  I'd put it down to the change in season, but maybe it's hormonal.  I also have a persistent headache which really isn't me.  

Member
Posts: 628
Registered: ‎01-05-2012

Re: Tamoxifen and side effects after completing 5 years

Same here I've been on 10 years it's awful
Member
Posts: 628
Registered: ‎01-05-2012

Re: Tamoxifen and side effects after completing 5 years

Hi there I have just finished after 10 years and I feel dreadful light headed nausea and mood swings I am hoping that someone can help me on here as I can't remember life before tamoxifen I am 62 and had a TAH mastectomy and oophrectomy
Member
Posts: 1
Registered: ‎21-11-2017

Re: Tamoxifen and side effects after completing 5 years

I am 60 and completed 5 years of tamoxifen in feb 2015.  I was able to wean myself off all meds since that time.  Over the past 2 years I have felt worse each day.  It is as if my thyroid is not working right.  Weight gain, exhaustion, muscle pains, etc.  Ya'll know that blah feeling you get & you just can't point your finger to one thing not feeling right.  That is me.  I am so sick of being sick & tired.  Anyone with these type of problems after completing the tamoxifen regiment?

Member
Posts: 1
Registered: ‎13-11-2017

Re: Tamoxifen and side effects after completing 5 years

Hi my name is jennifer hastie and i had breast cancer in 2010 may, since i had my breast off in november of 2010 i was put on tamoxifen and im still takeing it untill 2020 its been hard get the hot flushes and the ache legs and cramps, but it will stop the cancer comeing back.well done to those who have been taking it.

Member
Posts: 1
Registered: ‎30-09-2017

Re: Tamoxifen and side effects after completing 5 years

Hi, i stopped taking tamoxifen 2weeks ago after 5 years, i have felt constantly sick, not eating and now starting with flu like symptoms
Member
Posts: 47
Registered: ‎14-03-2015

Re: Tamoxifen and side effects after completing 5 years

Thank you so much to all of you posting your experiences: it's not easy to find information on this. I am due to stop in 2 months (well actually I'm being encouraged to do at least another 5 yrs), but everyday had been so hard for me on this drug. I am hoping I recover quickly. Please keep posting how you go and if you had chemo/are premenopausal. I'll do the same when I get to finish and update the zoladex/tamoxifen post I started a few yrs back in case it helps anyone treading the same path.
Member
Posts: 1
Registered: ‎06-09-2017

Re: Tamoxifen and side effects after completing 5 years

I stopped tamoxifen after 7 years 2 months ago.  I too am having night sweats and I just feel off most of the time!  Not nauseous but kinda light headed and tired. So you are not alone but would like to hear of anyone else having issues!