Breast Cancer Now Forum

Thanks for the hugs Tili - I just reached 70 in December - some days I feel like 92!!!  I'm not ruling out the drug - yet!!   You take care too xx ... View more

Thank you so much Tili for your reply - I think we were brought up in an era when you didn't ever question people in authority and put your trust in whoever it was, doctor, dentist, policeman etc.    So for me to question this was something.   I just feel the hormone tablet has robbed me of me - I feel tired and grumpy with it all and usually I'm full of enthusiasm going at things 100 miles an hour.    So once I get these results and hear from the oncologist I will make my decision whether to stop Exemestane for three months and see how that goes - stop it completely - or try Tamoxifen.   Oncologist told me I could get endometrial bleeding and there was a higher risk of stroke on Tamoxifen which didn't exactly fill me with confidence.    Stay safe, stay well and stay happy - much love Moira ... View more

Tili - thankyou for your kind reply - can I ask you your age!    I am having my bloods checked and GP is writing to oncologist - so will see where that goes - I feel so supported on this forum though - I might take a longer time off the drug and then decide.   How long did it take for you to feel more like your old self - I felt like I've lost my old self way down the road and I want her back 🙂     Love Moira x ... View more

Hi Sue and thanks for your response.  I'm similar stats to you - 78% change of it not coming back in 10 years using surgery, chemo, Herceptin, bisphosphonates and hormone tablet.   There's no guarantees though that I won't be in the 22% - I guess there's no guarantees in life.    Perhaps we are feeling it more just now because of all the other stuff we are going through - I know it has played on my mind more because I'm usually busy and out and about and doing different things - although these pins and needles are impacting on my music playing, crochet - even holding the phone is a pain...     It seems like overall, this is the worst part of the therapy and some poor folk are on it for ten years.     Having spoken to my GP yesterday - I am going to have full bloods done to rule out any underlying health condition - then she is writing to the oncologist who I find quite dismissive - I appreciate he is busy and there are many girls with worse diagnosis than me - but I still want to be able to discuss my treatment without feeling like I'm a pest.    So we shall see - might take a 3 month break and then decide after that - GP said not to do anything in the meantime until we have things checked.    My bisphosphonates are intravenous but have been delayed by 6 months - so two to go - April and then October this year - I felt pretty yucky a few days after the last one - but have osteoporisis in my lower back so thought it better to have them.  Nurse on Breast Cancer Now says the Tamoxifen is also more helpful to bones unlike the Aromatase Inhibitors like Anastrazole, Exemestane etc.    So thanks for getting back to me - it's a dark dismal day in Aberdeen today - trying to snow but failing up to this point - wish it would just do it and get it over with - the spring bulbs are through tho so that's something to look forward to - take care xx   ... View more

Rose I read your post with interest - I too was fit before my op and came through the surgery well - chemo was yucky - only had 3 - but the Herceptin wasn't too much of a problem although it did affect my heart and I'd to stop for one cycle that is all OK now.   The bone infusions aren't fine but I've only two of them left to have - should have been April/Oct 2020 finishing this April but Covid delayed it so it's October 2020 - April/October 2021.    I haven't felt terribly well supported by my oncologist - he was very effusive and charming when meeting him prior to treatment but very dismissive on my appointment after that.    I almost changed onto Tamoxifen last summer as I was humming and hawing about the pain then and he barked at me "Do you have a womb" - I said yest - he said "well you can get endometrial bleeding with Tamoxifen and there's a higher risk of stroke".  Well thanks doc for those kind reassurances.   I tried 6 weeks off the tablets last summer but it wasn't long enough I fear - he was ready to just give me the Tamoxifen but then I decided better the devil I know........   and here I am envisaging a further 3 years of this.     I have to say the most wonderful support I have had has been from Breast Cancer Now and the Someone Like Me Service.   They get it - you get to speak directly to a breast care nurse and they know what they are talking about.   Armed with the information from them I have felt confidence in moving forward and discussing that information with my local breast care nurse who has liaised with Oncologist.       Spoke with my GP yesterday and I am going to have bloods to rule out any other underlying reason for the pain - you wouldn't believe a little white tablet could cause so much trouble.   She is going to write to the Oncologist as I don't find him approachable.    Then I may take a 3 month break and see how that goes before decided if I'm going to change or endure.     This is the first time I've used the forum and I have found it too to be a valuable resource with so many people who are going through the same thing which justifies it as no-one who hasn't gone through this gets it.    So thanks so much for your input - I feel much supported by everyone's replies here - thanks and I do with you well and happiness with your new grandchild.   You need to be fit for that eh!   Take care for now xx Moira   ... View more

Well Sue - you've certainly had a double whammy and more - it is good to hear your experience - I was 68 when diagnosed in 2019 - had mastectomy, three chemos - Herception and bone infusions - Zometa - still having them which has been delayed due to Covid.    So I have three years to go with tablets and was considering changing to Tamoxifen which Breast Cancer Now says offers more protection to bones.    I have osteoporosis in lower back and pre ostopeina in others - wondering if that could cause the pain - I've tried everything - my feet were terrible last summer - came off Exemestane for 6 weeks (not long enough I fear to know if it's beneficial) Oncologist said he'd put me on Tamoxifen but I decided to stick with the devil I knew - now suffering so much pain, pins and needles - spent a fortune on chiropractic and orthotics (which have helped my feet very much) tried cbd oil which didn't do anything so now take paracetamol at bedtime and in the early hours when I waken and that is keeping me sane and letting me sleep for now - fed up of the whole thing but the fear of stopping is big - like you this hormone is 6% of the overall package of treatment.  Speaking with my GP on Friday to discuss the whole sorry saga - feel I've had to go on a research project all my own - found in Carpal Tunnel Syndrome website "can be caused by Breast Cancer drugs - Exemestane and Anastrazole - I feel I've been trying to be heard but really nobody coming up with anything conclusive.   Tired and fed up but will soldier on as I'm not a quitter - I'm sorry you are limited in your walked as this has been my sanity during lockdown - I hope you find improvement with your knee replacement - it may well help your hip once you're not trying to avoid the pain in the knee - thanks for sharing - I wish you well - stay safe xx ... View more

Yes it was  ... View more

Hi there You may no longer be on this forum but I'm at the stage you were stating here in October 2018 - I'm so tired of body pain and feel like an old woman - just turned 70 in December and two years in with Exemestane - onc said he would move me onto Tamoxifen last August - however, I just wanted to try 6 weeks without tablets to see if that helped - not a lot of difference but over the last few months the pain and body stiffness, pins and needles in my hands etc has been getting me down.   Reading a lot of the messages on here we are no better on whichever one we try - so I'm wondering - did you stop? ... View more

No real information yet x I'm waiting for someone like me x I spoke with my local pharmacist.  She was very helpful when I was hurting from the anastrazole x my breast care nurse said that they might shift me to a different brand of anastrazole but pharmacist said that that wouldn't be helpful as the binding agent is the only thing that is different x the drug is still the drug x I felt she gave me good info in order to go well informed to discuss with breast care nurse x I was able to say I didn't want a different brand of  Anastrazole.    I am also attending the chiropractor to establish if there is any other cause of the body stiffness x she is working on various areas to try and loosen things off and she recommended I didn't make any rash decision to stop hormone tablet until she'd worked on all the tightness in my body x      I went into the menopause after chemotherapy for bowel cancer in 2002 and didn't suffer any body pain like this x so I'm looking at all my options first before I make a decision x I  will take all the advice to my breast care nurse when I've gleaned it all x Just heard a bit on TV about CBD oil - wonder if anyone has tried that?         ... View more

Thank you Evie-S for your hug which is most welcome x interesting you should speak about tamoxifen as yesterday I saw lots of posts about Tamoxifen and similar side effects and I am not sure whether I feel encouraged to try it x    I am going to speak with some of the volunteers at Someone Like Me - I've found this hugely helpful at the early stages of diagnosis - and see if there's a glimmer of hope from their experiences x armed with that information I will again talk to my Breast Care Nurse and see what she might suggest.  This is my first visit to the forum and already it has been so encouraging so thanks so much x I have taken it all on board x hugs right back at you x I hope otherwise you are getting stronger ❤️ ... View more

Hi there and thank you so much for your reply to my post - it is pretty awful isn't it - the nurse I spoke to on the helpline said almost half the calls they get are about side effects of hormone tablet.   I was reluctant to ask for a change but - yes - you are right - they both have produced the same side effects and I'm finding it extremely demotivating.   I'm a go get em kind of girl - never put off till tomorrow and all that - but I'm neglecting the house and the garden and that's just not me.   I'm too scared to just stop the hormone tablet - I def don't think it's the infusion of bisphosphonates - I don't seem to have had any reaction to it at all apart from first one after which I felt grotty.    If you haven't tried the Someone Like Me service through Breast Cancer Care - I highly recommend it - that's my next port of call tomorrow to speak to other people who have gone through all this and maybe glean some more information/suggestions on how to deal with it - I only usually need pain killers at bedtime but like you it's after sitting and on waking in the morning that is worst.      I hope you continue on the road to wellness and find something out there to help you - it definitely helps to know we aren't alone - all the very best for now and thanks again xxx ... View more