Tamoxifen.. bahhhhh

Hi all.

on Tamoxifen now for a year and a half.. i am fighting the weight gain and winning very very slowly. when i told the breast care doctors about weight gain they nodded sadly and said yea... but hey, you beat this. weight gain is a small price... yea. it is a different emotion the weight gain, from the euphoria of being cancer free. its still depressing.. i had lost a massive amount of weight before i got sick and was so proud... then chemo/steroids, whooooomph... weight back on and so slow to shift it now.

i'm 50. i feel older, stiffer, blurred vision, attention problems, pain in my lower legs, feet and ankles. i cannot get up off my knees without making that loud ummmmphhhh noise that comes with old age. i walk 5 k at least 4 times a week, i keep my steps up to 8-12k per day, eat healthy, take lots of supplements, including devil's claw for joint pain. it takes me a good 10 minutes to get warmed up enough in the morning to walk without limping. I know, i know all the benefits outweigh the side effects... i think... do they though? can i do another 3.5 (and probably more, as my friend has been told after 5 years that another 5 would be a good idea). i feel my quality of life is far lower than i would have hoped for. is there NOTHING else can be done ? my doctor shrugged, my breast surgeon shrugged, and people in general are kind of saying suck it up buttercup you're one of the lucky ones....

needed to vent... thanks for listening.. dont mean to sound ungrateful. i'm so incredibly grateful to be 2 years past all of this, but on low days i find it all a little depressing to be so creaky and old. i'm not old.

29 Replies

  • I'm really sorry you are experiencing these problems I took tamoxifen for 10 years and didn't really notice any side effects

  • Hi,

    Reading this made me feel so much better - it is exactly how I am after 2.5 years on Tamoxifen and turned 50 in June this year.

    I have been getting exactly the same symptoms, and reactions from people. Yes I am so lucky to be here, but the after effects are hard to deal with too.

    I'm currently having problems with work, expecting me to be, and do, exactly as I was 3 years ago, with little or no understanding of the 'after chemo' treatment. The attitude seems to be that chemo is bad, you've had that, now get on with it.

    Take care, and thank you for sharing your experience.

    S xx

  • Hi, Thankyou both, I feel the same way, feel guilty that yes I'm here but the weight gain and the pains in my underarm and legs is depressing, it's nice to have a moan with people who understand and don't judge 😊Thank you and take care xx

  • I know exactly what you mean. People are so caring and so lovely but they don't get it when you try to say you wish you didn't have to take any medication or put any poison in your body. because of the side effects you don't feel like yourself anymore. I look in the mirror and it's not my body (nothing to do with the surgery I can deal with scars) but somewhere in there is my body and I want it back and if I knew that at the end of tamoxifen that it would come back to me with some help and things will improve then I can do it with good grace 🕺🕺

  • I totally get that people look at you and say look at you back to normal and you're so lucky. And to be honest I called once I was free of chemo for a few months that I would shift all that poison out of my body and Be Me Again.

    There's not enough awareness that's when you finish a medication or chemotherapy or have to take something to prevent something else that is actually has a detrimental effect on your body as well. And it's frustrating that people you work with expect you to be 100% the person you were before and you hopefully will be when all of the medication is done.. good luck and thanks for sharing that with me you've actually does feel better that I'm not whinging on my own 🥂😁

  • Hi I'm sorry your feeling so down about this X I understand all of the things you are going through and people don't really understand about how all of these treatments take it out of your body x yes we are very lucky to be survivors but we are different than we were before X keep strong and happy , I've been 5 years tamoxifen and 2 years letrazole with all the things that come with this but put joint pain down to meds 5 years of pain getting worse now I find out I need a hip replacement at 57 so it wasn't the meds its arthritis X all good fun lol X just remember we are still 18 in our heads X be happy sending love 💕

  • Hee hee love you all. I actually don't feel as bad now that somebody has listened and agreed..xxx

  • Hi Gracie66 - I think you have just written about me there - even down to the age 😂 I feel older than my parents, look older and move like I am in my 90's. I can't walk much at all. I swim when I can. The pains in my right wrist, hand and forearm ate indescribable. I am on similar tablets as a trial as there is nothing for triple neg cancer, this is the second lot of tablets as the first lot really incapacitated me and I took myself off them. I have been asked to try and stick these for three months, I'm only into one month and have my doubts. When I asked how much these will help me and was told one maybe two percent I felt like crying. I am going to try sticking this out but if the bone pain does not reduce I won't continue after three months as the benefits do not out weight the effects of these tablets. My rant for the day is over too now. Thank you for sharing as you have put me at ease that I am not the only one feeling like this. Lainey66 xx

  • Oh darling fellow Irish I have followed your story and I'm only in the ha'penny place when it comes to bravery and struggles, but I totally get when you say bone pain that's exactly what it is...and I can't explain it to my partner he looks at me with his head on one side and says "you've done so well and I'm so proud of you", and I feel like jumping out the window.... but jesus would I break my ankles when I land even though it's a ground floor window 😂.

    I have asked the doctors about different meds or alternative treatments and they said no there's nothing you have to do this. Don't get me wrong they have been amazing and I have just had to turn up to appointments and they did everything to help me be cancer free .I don't even think it's that I'm in denial. This goes toward preventing me from being terminally ill or having to go through it all again on the other side or it coming back somewhere else I think sometimes you just need to scream at the sky and say why me and feel a little bit sorry for yourself and then just do as my mother did and get on with it and feel better for letting it all out.

    Lainey you have had to go through a lot more than most of us in here and you have been incredibly brave and you've shared your story all of the way and I could be one of the ones that says suck it Up Buttercup look where you are now to where you thought you would be.. I won't .. and it's ok to say "F*** F*** F*** I I hate this shit".... but I find when I say it to my family they get a bit panicky. Obviously I'm not going to stop taking my medication but I do think I will start looking further afield for alternative treatments and remedies. X

  • Gracie - do research and talk to your doctor about switching meds. You shouldn't have to feel like this!

  • Hi, I too am on Tamoxifen and have been taking it for three years now. I found changing brands ( Wockhart to Teva) made a difference to me. It might be worth asking at your pharmacy. You are obviously very active but perhaps looking at some other forms of exercise might help the aching joints? For the past 12weeks I have been on a program suggested by my doctor that is run locally at a leisure centre and part funded by McMillan. I have been going to classes especially tailored to my ability. It is circuit training/ interval training which sounded horrendous to me but I now look forward to especially as my general fitness has improved plus my creaky, painfully aching knees are improving too.

    I hope you find something that works for you. You can do this! ☺️

  • Hi Gracie,

    I'm sorry to hear you're having such a hard time. You do sound exactly like I have been feeling! I'm 53years old, 3 years since diagnosis- bilateral lumpectomies, radiotherapy (so thankful no chemo) and tamoxifen. Same symptoms, along with depression-on pills for that. Feel like I've aged 20 years in past 2!! Weight gain (around waist) is shit. I know, and I am, very lucky as I know a lot of you ladies on here have had it a lot worse, and sometimes I feel so selfish and vain to be worrying about weight, when hopefully all seems good with me.

    I went to see my oncologist 3 months ago, was in tears with all my symptoms just getting on top of me. He advised me to come off tamoxifen, said that being on it only gave me 3% more survival rate. I have felt better in the past month, but still not 100%. I'm so confused as whether to go back on them or not. (My weight hasn't changed😩)

    All the best for everyone on here....xx

  • Hi I know exactly how you feel! I've now come off the tamoxifen and I am on anastrozole instead as I'm post menopausal. It may be worth chatting to your oncologist instead of your breast surgeon about possibly stopping.

    I was thinking I was going to swop one set of problems for another but fingers crossed the joint pains I have now are no way as bad as they were on tamoxifen. Weight wise I haven't noticed a massive change but I don't feel as big as I did.

    Good luck with it all and vent anytime you need to! Xx

  • Adding my "gawd you sound like me" message Gracie, yes it's shite... I feel so achy and old all the time, eat about half of what I use to but no weight lose just gain... I play netball once twice a week and sometimes its a herculean effort to get moving, I feel fed up when friends older than me can move faster etc...but do try and think it's for a reason!

    People keep saying you look so well which is fab, but you really want to reply "well thanks but these curls sometimes make me look like a poodle - you have no idea how much product I use, I ache all over, my scar really hurts, and I found it hard to get up the stairs today, yum I really fancy that cake but can't have it oh and sorry I smell... the deodorant I use is crap and is ineffectual against the buckets of sweat I produce in a day!" shan't obviously... but would be nice ... once :)

    Keep going lovely ladies!!


  • Good for you Gracie.. its that attitude that gets you through. I started walking after treatment which has kept the weight off.. and helped no end when l was having a down day.

    Josie x

  • I know how you feel. The weight gain and pain is unbearable. I found my lump when I was 34, but (in the USA) my health insurance wouldn't let me have a mammogram or biopsy till I was 35 because I had no family history. I was diagnosed on my 35th birthday. 😔

    I might also suggest talking with your doctor about trying other forms of endocrine therapy. You never know which works best for you.

    Personally, I've tried all the endocrine therapy meds. I have a rare autoimmune disease that causes some extreme reactions to certain meds. But, because it is so rare, there isn't any medical advice on what is safe and what to avoid in regards to breast cancer medications.

    I started with Anastrozole. Within a week every bone and join in body was in excruciating pain. (I could not move.) My BP dropped to 69/35. I was in and out of consciousness and bleeding from my nose and coughing up blood constantly.

    Next, I was put on Tamoxifen. The reaction was less extreme, but still bad. The sheaths on my tendons hardened in my wrists causing me to go in for surgery to have the tendons released and my bones became very thin. I literally woke up one morning and my wrist was broken. Furthermore, I couldn't walk due to extreme bone pain and bone weakness.

    Next, I was put on Exemestane. I still had the weight gain. This medication pushed my weight gain to the max if 70lbs from my pre-cancer dx weight. My tendons and bones were better. I still suffered with extreme bone and joint pain all over my body. Plus, this medication caused cystic acne that created lumps the size of large marbles deep beneath my skin from my jaw upwards that caused extreme pain. Also, my teeth took a huge hit. I started a prescription toothpaste to try to prevent more damage to the teeth.

    Now, I am on Letrozole. The weight gain is still a massive issue. (No pun intended.) But, the cystic acne is gone. Now my pain is concentrated to me wrists, knees and mostly in my feet. I can not stress the pain in my feet. It is terrible. In fact, I would prefer 10 years of chemo to this constant extreme foot pain. But... that isn't an option.

    I've now completed a little over a year on these meds. I'm in the "no choice but to take these for 10 years" category because I was so highly estrogen positive and due to the aggressiveness of the tumor (HER2+++, ER+++, PR+++, with a proliferation of 90%) and my young age.

    I tell you this for a few reasons. First, every body has its own quirks which respond to the meds differently. Some reactions can be life threatening for some people while others are able to squeeze through with no side effects at all. This can make it hard to relate to others reactions because one might easily assume that they are getting the same side effects as others on the exact same medication. But, when it comes to endocrine therapy, whether AIs (aromatase inhibitors) or SERMs (selective estrogen receptor modulators), the side effects vary drastically from one patient to another.

    Second, I wish to share that feeling of frustration. It can be hard to swallow that little pill knowing what will be in store for you the following day. It can feel at times like self-inflicted Chinese water torture. I don't know how long I will have the willpower to continue taking if, but I consider each day as one more challenge defeated.

    But, just like with any battles, we are left with scars. I'm 37 now and a fraction of the person I used to be. After over a dozen surgeries from mastectomy to total hysterectomy/oophorectomy and all the complications with reconstruction, AC ("Red Devil") chemo, radiation, Kadcyla+Perjeta targeted monoclonal antibody chemo therapy,... I'm still here. I'm still breathing. And, my little boy and husband still see me for who I am inside this scar riddled body that I no longer recognize.

  • wow surrey you have been in the wars.. you have bigger reasons than i do to say all the swear words and kick the cat. What was happening to me was i was awake tossing and turning half the night and eventually realised it was because i had pain in my ankles and feet. it just wasnt sharp pain that i am used to when i sprain an ankle or stub my toe (common occurance ) it's a constant dull ache that never leaves, and makes sitting for long periods annoying, i get restless legs and annoy the hell out of everyone in the room, because i have to get up and pace or hop from foot to foot.

    I am going to try to get an appointment with my oncologist and i'm going to talk to the pharmacist to see if changing the brand name is an option, ..

    thank you for sharing your story.. i hope you continue to do whatever you need to stay healthy and improve the further along you go. xxxx

  • I just started Tamoxifen. Haven't seen any side effects yet. But my oncologist said that he plans to have me on it for only 1-2 years and then he will switch me to an aromatase inhibitor. Said he found they get better results due to the swap.

  • I hear you, unfortunately I have found the medics do not really want to hear about the side effects of Tamoxifen or letrozole, take it is the answer. I found that the longer I am on the tamoxifen tablets the more severe the side effects get but if I have a break which I had to do for surgery for only 4 days then the side effects were completely different when restarting. I have also changed brand recently and have spoken to my pharmacist to see if they will change brands 3 monthly to see if it prevents the build up of see effects.

  • great advice, i'll try all of those options as well. i also came off it for 3 weeks to have a small cosmetic adjustment to my fabulous new boobie, and when i went back on it i didnt get the hot flushes anywhere near as bad but the stiffness was worse and the tiredness...

    i'm addressing the weight. it is also around my middle where i never put on weight before. it's also everywhere else mind ha ha... work in progress. check back in a couple of months! xx :)

  • Gracie,

    I have been on tamoxifen for 1 year. I too struggle with weight gain. I have a flabby tire around my middle. I'm told it could just be an age thing. Either way I refuse to give in and stop fighting because I know if I do I'll be 10pounds heavier and feel 10X worse. Keep active and eating healthy.

  • Yea but 2 years ago i lost 2.5 stone, realtively easily, and was swimming and up for all sorts of sports challenges. it's not old age, i refuse to believe that it suddenly kicks in the minute you hit 50 lol. so i'm living in hope that this is temporary and even if i do have to do the tamoxifen for 3 .5 more years that afterwards i will be my old self again. have to believe that or i'll go mad

  • There are alternative oral meds to tamoxifen. I think they all have their drawbacks, but maybe another set of side effects would be preferable for you! I am on letrozole. It gives me headaches, but that's a rare side effect. There are at least 2 -3 others.

  • I have recently changed from Tamoxifen (after 5 years) to Anastrozole, and for me both had horrible side effects. The Tamoxifen made me feel that I was constantly 'simmering' - I had no comfort zone in between 'too hot' and 'too cold'. It was a really unpleasant feeling. I don't have this with the Anastrozole but I do have terrible aches in my legs that keep me awake at night, which I am sure is connected to the meds. My GP has referred me to the onc to review and see whether there are alternatives. The thing that helps for me is my bc survivor friend at the gym. We have a good old laugh about our 75 yr old bodies (I am 55 and she is 49). Friendship and laughter is the best antidote!! xxxx

  • You just told my story ...we are in a special club..thought at 50 I would be on top of the world not struggling .take each day as it comes ...

  • Grace im the same came off tomoxifen went on anastrozole still the same we cant win!! I lay on bed in morning and stretch toes to upper body. i have fresh blueberries and banana smoothies and pure manuka honey. i had a tummy tuck in my reconstruction bonus!! but now putting fat on thighs and sides. i wear super lyca knickers to cover this lol. its a work out to get them on in the morning!! dont ask how i get them off. Its a comfort to know that their are other people out there with the same effects from these drugs.

    take care x

  • I think it's difficult sometimes to see what are side effects and what are the tablets doing their job , particularly so it seems for women who are not quite menopausal , I haven't heard many younger women have as many problems , and I do wonder why ? I have hot flushes and night sweats but these have improved since I've started doing a program at the gym (free with Macmillan for 8 weeks) and I was a bit of a sloth before , did my steps but nothing else , have also joined slimming world to try and shift some weight and lost almost half a stone so far -My oestrogen level is now very low so know the tablets are doing their job , and hopefully the sweats will stop soon ( also still having Herceptin and that , I think is causing my insomnia,added to the night sweats makes for a particularly attractive picture ! )

    Jo x

  • Replying to Gracie66 Tamoxifen Bahhhh

    I am 50 and was diagnosed in October 2016. Had 2 very small lumps removed from my left breast both lumps er/pr+ Oncotype score came back 1 lump was a 12 and 2nd smallest lump less than 1 cm came back as 29. After 3 separate opinions opted not to have chemo because my anemia would require me to have blood transfusions and that would increase my chances of getting leukemia. So I did 33 radiation treatments and started Tamoxifen in February. I have had hot flashes at night when I first started taking it but those have all but gone. I had a period in March and though that was gone as well, but last week I had a full fledge minstrel cycle including severe cramping and lasting 8 days. Yes, I put a call into my oncologist and am waiting to hear back. In the meantime, I feel very achy in my legs, knees, shoulders, and arms. I am not sure how much of this is normal but I suppose this is par for the territory and I too will be told suck it up buttercup. Weight gain is also very depressing. I am doing a walk study and so glad I am. It's helping me maintain since I don't seem to be losing anything except for my mind. I've been on Tamoxifen since February and I sure hope it stars likeing me soon. Any suggestions or encouragement is welcome. Thanks for listening.

  • If it offers any help and hope - I was taken off Tamoxifen (5 years) and Megesterol (2 years) in April 2016. I was so relieved about it that I actually hugged my oncologist. The reason for that hug was the hope of loosing over 40 pounds of gained weight (I felt like a beached whale), getting a decent night's sleep, reducing depression, regaining my short term memory, being able to move more easily and re-discovering "me" (I got lost along the way). The Megesterol made the side effects of the Tamoxifen worse instead of better. It was really a challenge to stick to taking them both for those 2 years)Now 15 months on I feel a lot more like "me" (watch out world I am coming back!!); have managed to loose 20 pounds so far (that's been b****y hard work and at least another 20 to go - but those pretty dresses in the box under the bed are still calling!); I still sleep badly but between an occasional sleeping tablet, mindfulness meditation, self hypnosis and afternoon snoozes when needed I cope; brain training daily has definitely help to improve my short term memory; am now able to move about more easily (probably a combination of losing the weight and stopping the tablets); also less depressed about life in general.

    Oh and for the record - dx at 48, DCIS stages 1 & 2, 3x tumours, RH mastectomy, recon with a DIEP flap (then had LH breast enlarged to match - the only perk of BC has been a tummy tuck and going from an A cup on a fat day to a DD, which my lovely husband thinks is marvellous, bless him!), and RT for 25 doses over 6 weeks due to too many bank holidays!!

    If there is one thing I have learnt - I am stronger than I thought and my desire to get back to "normal" (whatever that is) is being achieved by #changeonething It's not about big changes or lots of changes but about changing one thing at a time, baby steps, getting that to work (or not) and then changing the next thing. Search out my hashtag #changeonething on social media if you want more (life lessons, business lessons, just interesting "stuff"). We can beat this b*****d disease one step at a time. Peace, calm and love.

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