I am posting this on behalf of my mum who suffered from breast cancer 2022-2023 she went through surgery, chemo and radiation and she is now clear of breast cancer.
however she has to take Letrozole for 5 years and she is really struggling with the side effects she has put on a lot of weight since she has been on it. She eats a healthy diet and exercises this is really upsetting her and I wondered if anyone else had suffered with this and swapped to an alternative pill?
Thank you so much any advice or suggestions experience would be welcomed.
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MyStar86
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yes! There are two other pills which are similar but which may have different side effects, so when she next sees the oncologist she should have a discussion. Personal, on letrozole, I didn’t put on much weight but had severe arthritis with it and night sweats.
Thank you so much, do you know the names of the other pills? She speaks to the oncologist in a couple of weeks luckily so she will ask. She also has stiff joints and she used to have restless legs but since being on the letrozole it has made her legs very painful. She was worried about swapping pills in case they had more side effects but the weight side is really upsetting her and I’m with her all the time she really doesn’t eat very much at all and when she does it’s all very healthy. Thank you again for coming back to me. Have you finished your treatment now? I hope you are doing well x
The three are called Aromatase Inhititors (AI). They are exemestane, anastrazole and letrozole. I tried all three, with slightly diminishing arthritic symptoms on each which eventually got back to the earlier level. After eight years I asked my onco if I could come off them - balancing quality of life against risk of cancer returning.
At the age of 75 and assuming a tumour of 50 mm or smaller the risk after eight years of taking AI of death within ten years is the same as a woman who has not had cancer. But mine was almost 100 mm. I decided quality of life was better. I sleep much better with no night sweats now and I lost about four kilos in weight over about six months, without altering my diet. All ok so far!
I must stress that I didn’t put on weight with these AI’s. Your mother’s side effects might be totally different from mine if she switches.
A discussion it’s the onco is the way forward, but in the meantime there’s a lot of information on the MacMillan website.
Thank you so much for all your information it’s very helpful and very kind of you. I will have a look on the MacMillan website and have a Google into the other pills you mentioned so that’s brilliant it will just give my mum a bit of help in advance of her call. My mum is 75 and she had her lump and lymph nodes all removed at the start as they couldn’t get the results they needed via biopsy then had chemo then radiotherapy but had a clear mammogram and is now just on preventative measures taking the letrozole and having 6 monthly zolendronic acid infusions. I think it’s tricky with all the pills as the nature of them it’s to block oestrogen to prevent the cancer so they will all come with menopause side effects and she is aware of this and is ok with the joint pain as it’s manageable and the restless legs as they were all things she had before they have just been made worse however the weight side is something I know she is upset and worried about she gets so upset how non of her cloths fit her and I know she has cried a lot about it and says she doesn’t recognise herself since the cancer is which breaks my heart. I think it’s hard to know re swapping pills as I know she is worried but hopefully the oncologist can suggest an alternative that might not have that side effect. My mum only has to take them for 5 years but she hasn’t even been taking them for a year and her weight is just gradually creeping up from a size 12 to a size 16 now 9 months . Thank you so much xx
I am so happy to hear your Mom has made it through all the treatments to be cleared of breast cancer. That’s a huge plus.
I also have had breast cancer with surgery, chemo & radiation. Mine was also in 2022-23. I’m taking letrixole now too. I’m finding the side effects are not great too. I’ve gained about 6-8 pounds that I haven’t been able to shake off, & I’m wrinkling up in my face big time. My skin has thinned & I’ve been having teeth issues. My 4 bottom molars 2 on each side had root cracks & I’ve had to have these teeth removed. I’m inputting implants for 2 of them one is done & one soon to be done. My dentist is asking if this could be an issue of peripheral neuropathy with now another tooth starting to bother me. Guess I’ll see.
So for the weight part that is somewhat under my control, I’m trying to eat less carbs. Also drink only decaf coffee & less of it. Coffee does something to my body to prevent weight loss too. Not completely like a keto diet but more balanced using the keto breads, & if pizza for example kinda only eating a bit of the crust or homemade use a tortilla shell for mine.
I struggle with this & tend to lose & regain the same 4 pounds but I’m still eating well & enjoying my food ( & drinks -liquor once in a while). I find drinks do set my body off of my plan but it’s life.
I haven’t asked my doctor about a different medicine from letrixole. This reduces hormones which explains why my skin is wrinkling so much. I’ve heard the meds all have side effects
Good luck to your Mom. I have just 3.75 years of letrixole to go. I hope never to have cancer again & wish the same for your Mom.
Thank you for your reply and I am pleased to hear that you overcome the cancer as I know what a hard battle it is watching my mum go through it.
I’m sorry to hear about all the problems that you have had to follow it seems so unfair after surviving cancer that you have to then go through yet another battle. My mum hasn’t had any teeth issues, she had a couple of them chip but she is on a very high dose of calcium and vitamin D along with the zolendronic acid infusions.
It sounds like you are trying very hard with the weight side with diet plans and it’s good that some of it managed to come off. Mum has such a healthy diet and gets me to monitor what she eats so as not to have anything bad so I know it’s a very clean diet along with daily exercise so unfortunately I don’t know how the weight can be shifted. I have looked into the side effects of the 3 drugs used and letrozole is the only one that mentions weight gain as a side effect the other two do not. She is going to ask the oncologist about the 3 drugs to understand if the other two would be as effective and if they are all the same then she wants to swap due to the weight gain element but if letrozole is the best drug then she will stay on it. I just know how much it is upsetting her so I don’t wanted to help her by doing some research prior to her oncologist call.
Thank you again for sharing your story and I wish you all the best too xx
Hello Mystar. I was very interested to read about your mum and the letrozole. I am on letrozole after having successful breast surgery and radiotherapy. I am waiting for an appointment with the endocrine nurse to see if I can change to another drug. I have been on Letrozole for 10 months and am getting very painful joints, especially my knees. I have put on quite a lot of weight but, unlike your mum , I have been comfort eating. I would still like to know whether it was partly a side effect.
My heart goes out to your dear mum and I hope that you get some answers
I am pleased to hear that you have had successful treatment that’s really positive but it is upsetting that the letrozole causes such horrible side effects. The joint pain is something my mum does struggle with especially first thing in the morning getting out of bed, she has also developed a trigger thumb I think it’s called plus if she sits for any length of time it’s very hard to get back up again.
I think mums call is in the next few weeks so I will let you know how she gets on with the oncologist as the other 2 drugs do have similar side effects but they do not mention weight gain where letrozole does.
My heart goes out to you too and I hope you can get some help and answers soon. I’m sending big hugs xx
I do feel for your mum, she must think herself lucky having a caring daughter.
I start my breast cancer treatment just as lockdown started, 2nd chemo session hair fell out, operation followed by radiotherapy.
Put on Letrozole and yes have put on weight and hair not growing back yet. I eat and healthy diet and walk and go to gym but cannot lose the weight. I can tolerate most of the side effect so have not tried different tablets in case for me they are worse. So I admire those who do.
I do think putting on weight when your mum and lots of others are trying so hard is the worse as it feels like you should be able to control to. I am 73 years old and hoping to only have another 2 years on Letrozole.
Thank you so much for sharing your story and that’s very kind of you to say. I love my mum so much she is my best friend so I would do anything I can to help her, it broke me to watch her go through the cancer battle but she was amazing and I was with her through it all I didn’t want to leave her.
My mum was the same she lost her hair after the second chemo and she found it really painful when it was coming out and was happier once it had all come out actually. She was lucky as she had always had very thick hair so it has grown back so quickly almost as soon as she stopped the chemo.
My mum is thinking the same re side effects of the other drugs or if they will be less effective against the cancer so she is worried so she is waiting to talk to the oncologist but I wanted to do some research for her so she could make more of an informed choice. I just know the weight is upsetting her a lot the joint pains she has coped with but the weight just gets to her when she is trying so hard and it still keeps pulling on. She isn’t that big and I don’t see it but I know she was a 12 and now buys a 16 because she doesn’t feel comfortable in tight cloths. Mum has only don’t about 10 months of the letrozole so it’s another 4 years yet to go.
I wish you all the best too and thank you again for your kindness in sharing your story experience im just so glad to hear you are free from the cancer xx
I've been on Letrozole since Dec 2022. No weight gain, but had joint pain and thinning hair for first 6 months. Hair grew back and not losing anymore and joint pain also gone. I've also read that Letrozole reduces estrogen levels more than the other AIs so that's why I decided to not to switch.
Thank you so much!! That’s an important point re the oestrogen and that’s why mum isn’t sure about swapping so thank you for clarifying that as I would not want her to swap if that’s the case because a bit of weight gain is nothing vs going through the cancer again.
Can I ask how long it took for the joint pain to go? Many thanks 🙏🏻
Oh ok that’s a shame I was hoping you were going to say longer than that as mum has been taking for about 10 months and it’s definitely not getting better the joint pain is worse if anything 😞 but thank you for letting me know.
Thank you and I’m glad the exercise helps you. We do go for daily walks and she has a group exercise class twice a week but if she does too much it triggers her restless legs in the evening but it seems to be more getting going that’s the hard part especially first thing in the morning getting up and walking she is in agony or if she sits for too long she can’t move when she stands up. She gets bad pains in her hands and has developed this trigger thumb thing but that’s not too painful for her. I spoke to her about letrozole being the most effective which is why the side effects might be worse re the weight gain and she doesn’t want to swap if it puts the cancer at risk again so I’m happy to hear that it’s just hard to watch her suffer. Thank you for taking the time to reply to me it does mean a lot as I will do anything I can to help my mum.
Yes the morning was the worst getting out of bed. But if she's committed to morning walks and stretching that will go a long way. I also had trigger thumb, and got a cortisone injection which cured it.
Thank you for taking the time to reply and I hope that you are doing well as you said you had finished the 5 year course of the letrozole?
I guess everyone is different it is listed as a main side effect and it has had an impact on my mum and she is very upset by it but she has decided to carry on with it as she does not want to risk going through the cancer battle again for the sake of some weight gain.
Did you find you had any joint pains and muscle stiffness?thank you again for taking the time to reply to my post xx
Did you ever find anything that helped ease the pains? Did it ever improve the joint pain the longer you took it as mum is definitely getting worse with the joints it’s hurts every time she stands up from sitting she is fine once she gets going but sitting to standing is agony. She is also having the bone infusions as well which also add to the joint pain but I was hoping things would ease for her not get more painful.
I’m hoping to try and find something natural or anything really that might help her I’ve found a good private physio which we are looking into.
yes yes i am so sorry your mother go through the pain I can totally feels for her because i been through too, i got up in the morning put both my hands in hot water pot( i microwave it) to relief the pain, also i had to go to work that time when i increased my activities at work i got distract from work the pain went away then came back mainly at night i took melatonin up to 30 mg seems help i use extend rime relief from natrol it really help.
Thank you so much that’s really helpful and that’s like mum when she is active and doing things it’s fine but as soon as she stops and sits down she can’t get up again without a lot of pain then she hobbles trying to start walking but once she gets going it’s ok but it does seem to be in the evening that it’s the worst when she is sat after dinner etc. we got a treadmill for the lounge so she uses that most evenings just for 10 mins at a time to ease it as she also has restless leg syndrome. First thing in the morning is definitely awful for mum too I’ll tell her about the warm water to try that and see if it helps.
I will have a Google and order some melatonin so thank you for the recommendation. I hope you are doing well now and free from cancer 🙏🏻 thank you for your advice and for sharing your story xx
I have just ordered some online the max strength I can find in the uk is 10mg so I’ve ordered those. Did you take them at bedtime or any time of day? I just wondered what would be best? Thank you again xx
I do so feel for your mum. Give her a huge hug from me.
I've been on Letrozole since 2017 and have 3 more years to go (a 10 year stint!)
Like your mum I've gained weight and hated it (size 12 to 16 and only 5' 1") and no matter what I do the stubborn pounds stay on. However, I've finally learned to embrace the weight and have told myself I'd be a lot more wrinkly if I lost it as my old skin isn't as springy as it used to be.
Keep up with muscle building and bone strengthening exercises, as Letrozole can affect bone density too. Sounds like your mum is doing a great job.
The joint pain.....I was totally fine for the first two years and then the pharmacy started sending different brands. The difference was huge. I could hardly get out of bed in the morning, and really struggled to walk. If Letrozole is still the best option for your mum, it may be worth trying different brands and comparing the ingredients. The brands that work for me are Teva, Cipla and Accord. I would know within a week if they were good or bad. Thankfully, I can now go walking and dancing again with only the occasional age related hip or knee pain. 😀
I hope things settle down for your mum or the oncologist can suggest an alternative to Letrozole.
It's a horrid journey to be on but your mum really is doing brilliantly, as are you.
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