Breast Cancer Now Forum

Sue C

Hi R The tiredness, in my experience, is caused by the radiotherapy rather than the tamoxifen. But as you started both at the same time, it’s probably hard to tell. In both cases, things should start to improve after 6 weeks. I take my tamoxifen about 8 at night, and don’t have any problems with sleeping. Hopefully, for you, this will improve. Maybe take it early evening, with your meal, and see if this helps. take care sue xx

Sue C · ‎29-04-2021

Hi Ladies After being on tamoxifen for 4 months, it has been suggested to me to take a break from it for 6 weeks to see if the side effects I’m experiencing are due to the drug. My ME is much worse and have constant stomach upsets. Anyone taken a break from hormone therapy? Don’t like the thought of it... Sue xx

Sue C · ‎29-04-2021

Hi I take Ibandronic acid and had the same thoughts as you! There is a dose that you can take monthly, which I do, and seems to be ok. Ask your gp. Sue xx

Sue C · ‎15-03-2021

Thank you Maggie for your reply. It is reassuring to know that things will get better xx

Sue C · ‎01-03-2021

Hi And thank you for your reply. My fatigue is an ongoing daily battle unfortunately. I need to adjust massively to what I can do now. For your tiredness, can I just suggest keeping your fluid levels up. You are suppose to drink 6-8 glasses a day, and it can help with tiredness. Good luck with your surgery. Sue xx

Sue C · ‎21-02-2021

Hi This is a specific question about the COVID jab. I had lumpectomy, only 3 lymph nodes removed that were clear, chemo and rads in 2016 on the right side. Is it ok to have the COVID vaccine in this arm? I know some say that you shouldn’t have bloods taken on the same side. Thanks Sue

Sue C · ‎21-02-2021

Hi Ladies I expect there is a thread on this somewhere, but having scrolled through many pages, I’ve yet to find a general thread. So I hope this is useful to those, like me, who have just started on tamoxifen, or those further down the line. Having been on letrozole for 4 years, I was switched to tamoxifen just before Xmas, because it is gentler on the bones. So now, after a few months I’ve been experiencing a few things, which could be tamoxifen or my ME/cfs getting worse. I’m really struggling with fatigue, to the point where I’m not really going out. And with this comes anxiety. So I was wondering if anyone else is having this problem, and for those of you who have been taking it longer, does it ease over time as you get used to it? Thanks for any replies. Sue xx

Sue C · ‎17-02-2021

Hi Michele Thank you for asking. No I don’t really feel any side effects from coming off zoladex I think. I haven’t had any bleeding so I guess I’m menopausal now? I have also been switched from letrozole to tamoxifen, so it’s had to tell what is causing any issues. I am experiencing some anxiety, but I don’t know whether that is due to my cfs ( Chronic fatigue) or the tamoxifen. I’ve been taking it for about 6 weeks, so could be having some side effects from it. I’ll see how it goes over the next couple of months. Oncologist is going to check up on me soon I believe. Sue xx

Sue C · ‎28-01-2021

Hi Ladies Im not sure whether this is to do with tamoxifen, or nerve damage from hormone therapy, or something else, but I’m experiencing what I can only describe as fizzy legs. It’s an internal feeling, like my legs are full of lemonade! Not sure if that makes sense, but if anyone else has the same problem, you will know what I mean. Does it resolve itself, and what helps? Thank you. Sue xx

Sue C · ‎26-12-2020

Hi Ladies Has anyone come off zoladex and noticed any side effects? I was on it for 4 years and after just a couple of weeks, my breasts feel very sore and tender. Very uncomfortable. Thank you for any replies. sue xx

Sue C · ‎15-12-2020

Hi sunflower Thank you for your reply. I have been warned that I will get hot flushes and my mood may change! I think it’s the unknown that bothers me. I’ll let you know how it goes... xx

Sue C · ‎10-12-2020

Hi Ladies Having been on letrozole and zoladex for 4 years, the consultant is switching me to tamoxifen. The letrozole has caused various issues over the years, so time for a change. Has anyone else been through this? What changing side effects have you experienced? Sue xx

Sue C · ‎06-12-2020

Thanks 😀 Would you let me know how you get on? Xx

Sue C · ‎04-12-2020

Hi Julie Thank you for your reply. I have an oncologist appointment next week to discuss the medication. Sadly, the letrozole has had many side effects for me, including bone thinning, which has caused a few fractures this year. I think which ever meds they give you, the side effects will always cause fatigue which progresses over time. The alternative of not taking anything though feels me with anxiety and outways anything else. My oncologist is sympathetic to cfs, but there is nothing they can do. I am resigned to the illness, but when I look back to how I was, it does make me sad. Good luck with your appointment xx

Sue C · ‎03-12-2020

Hi Ive just seen this post.... I too have cfs on top of having to deal with hormone therapy. After being on letrozole and zoladex for. 4 years, I’m finding it harder to deal with. Do you find the fatigue is steadily getting worse? sue xx

Sue C · ‎16-10-2020

Hi Back pain is something I’ve experienced before and after treatment. Normally lower back, but sometimes higher where I think you mean. Sort of where your bra strap goes? I find if you lie on your back, with knees raised, slower lower your knees from side to side to the floor, and it stretches that area. Any new pain is always worth checking out just to be on the safe side( I know that’s what you don’t want to hear, but the alternative is that you’re worry anyway). Maybe ask your gp if he can get in touch with your oncologist ( or can you?) and perhaps they can investigate first, rather than see the gp. Best wishes Sue xx

Sue C · ‎06-10-2020

Thanks Sam. That’s reassuring x

Sue C · ‎06-10-2020

Thanks Annie. I'm going to have to try this brand atm as it's all I've got. They didn't seem very accommodating in requesting a different brand. I'll see how it goes, but I may switch to an online service. Sue xx

Sue C · ‎05-10-2020

Hi Ladies Having been on zoladex for 4 years (yes, 4 years!! with no end in sight 😕 ) it definitely depends on who does it and how. My advice would be to get the Emla cream and apply it 1 and a half hours before. If the nurse is OK with it, it is better to be sat rather than lying down. I think you may have just been unlucky with the first one. It gets easier I promise! Sue xx

Sue C · ‎05-10-2020

Hi Ladies I'm thinking of switching to an online Pharmacy as local chemist not very helpful 😢 . Anyone use this service? What are your thoughts? Thanks Sue xx

Breast Cancer Now Forum

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