Breast Cancer Care Forum

Hi Joe I was on Exemastane and had multiple side effects acheing joints particularly hands and wrists. However my eyes were so sore very red and uncomfortable all the time, mentioned it to BC nurse and although they had said none of my symptoms were drug related  she rang back and told me to stop taking them immediately and get my eyes tested. This I did Optician said my eyes were extremely dry and I needed eye drops and that it was probably related to the  Exemastane. I stopped taking them as my GP said to have a break as all my discomfort was drug related, this was last May, my eyes are only now feeling better. If your Mum is having the Infusions this also effects the eyes, its not easy but I have decided not to take it as life was very miserable . Sending best wishes hope this helps. ... View more

Couldn't put it better myself, well done. X ... View more

Hi Tomasina I 'was on Exemastane  and had the runs every morning and very stiff jounts ,am having a break from it at the moment, 3months and am almost back to normal but know I will go back on but just felt so dreadful , might try Tamoxifan but again the side effects worry me. Take care x ... View more

OMG thought it was just me, been struggling jwith so many side effects first on letrozole and now exemestane.  Very stiff  with  hand and feet, but am suffering particularly badly in this hot weather with leaking and sweating down below, wear thin pads but it seems to be getting worse, have started using deorant spayed at top of legs but havnt discussed with Doc as yet just feel like I'm moaning and should be grateful they fixed me the tablets make me so miserable.. Sorry I haven't  got a solution just that you are not on your own . I had 2 lumpectomys and finally ,   a mastectomy with radiotherapy  no chemo , finished treatment last ! Aug  Be grateful if anyone has any tips. Best wishes x ... View more

Hi all, Just to say I have been off Exemestane since 5th May, saw Oncologist on 25 th of May who does not believe any of my symptoms are drug related but said keep off for another 4 weeks. So I have, and feel so much better its amazing no pain except a little stiffness in hands feet and legs in the morning which wears off quite quickly. Still get stiff if I sit for a while but its so wonderful to feel like I do, will give it another try but just to say perhaps if you are feeling dreadful give yourself a break and recharge your batteries, its heaven to feel pain free and abit carefree for a while, hugs to all 👍💖😊xx ... View more

Hi Janey2 So glad it's good news on the bladder front !! I am considering coming off the tablets feel like a shadow of my normal positive self , am having a break but will go back on think I am really too scared to stop completely even tho the statistics seem to make only a small difference, would I rather be here but achey and all the rest or not ... It's so hard but so glad you got good news, Fab 💝take care xxx👍 ... View more

Hi Janey 2 Thanks for the info I did read about the Monster in my fridge I think it's in all my rooms at the moment but it did make me laugh, haven't shown it to other half yet but I will. Best wishes to all in this club xx ... View more

Do sorry JAH Got complete ly mixed up, It's Binty again replying to you said Emily, doh Got fuzzy brain aswell as all the symptom except hair loss, take care very best wishes , Bonty x ... View more

Dear Emily I am in the same position, I did answer but it has not shown up don't know what happened. I have lobular cancer 2 lumps removed and then right mastectomy last May. Started with Letrozole and was so stiff and achey could hardly walk some days, but when it made me so low and weepy was told to stop and have a break. So was given exemastane after about a month started October last seemed ok at first schedule in hands and shoulders thought I would cope but I 'm off them now for almost a month and feel better think it's still in my system but now I have that awful decision to make. Surgeon says nine if my symptoms are relaty to medication but I know they are. I'm 65 and until this was very good for my age, now I feel like an old lady the thought of feeling like this for another 4 years is depressing and I feel depressed now. I have joined a gym but only use the treadmill as I still have fluid around site if op and it seemed to be increasing. Exercise is as good as the tablet s Oncologist has told me but how much, can I take that risk, it's so difficult so I completely understand your situation best wishes, x ... View more

Hi I am in the same position 2 lumpectomies and then mastectomy, invasive lobular, grade 2 none in lymphs. Jan 2016 First Letrozole which really effected joints and I was so low. Could hardly walk. Had a break been on Exemestane since last October, seemed easier at first was so pleased thought I could come, but then started in shoulders neck head hand and feet. Every morning can hardly walk, I 'm 65,( but a young one) she says laughing to herself I used to be !! Was also leaking, and crying all the time, life just seems very hard at the moment and I sailed through all my treatment. The thought of feeling like this for 5 years never mind 10 devastates me. Have been off for 3 weeks and do feel better still a bit achey but have joined the gym My Oncologist says if I was to exercise every day I could come off the tablets, it's such a frightening situation, quoted me an 83% chance if recurrabce with 4% more with the tablets have not tried Tamoxifan .as yet, what do you do it's such a risk, so worried. Best wishes to everyone with this disease thought I was doing well but really struggling, got good support but they just want to me say I'm fine . ... View more

Ash I found out on Exemastane I was leaking quite a bit (wee) was even using pads said to my daughter in law by the time 5 years is up I'll be in nappies, sometimes you have to laugh. But know I've been off it for 3 weeks it's stopped !! Defo think it was the tab that was giving me that problem xx ... View more

Hi Ash & all Thank you Soo much for your reply and best wishes I can't tell you how much I appreciated the answer. The worry of making g the right decision is terrifying, feeling so very unwell and down taking the tablets or trying exercise and no medication. Has anyone gone down that road yet. Was reading all the leaflets that was given when first diagnosed concerning did effects of the area inhibitors and they all say speak to your BCN or Oncologist tell them if you are struggling and they will help you but that's not happening, it's such a big decision. (Just a note apologies for the dreadful spelling mistakes in previous note was a bit teary when writing)😵 I found the message when opening the forum by the Psychologist Dr Cordelia Galgut who counselled ladies with BC how different it was when she was diagnosed herself, very interesting and something I had mentioned at my apps with Doc as they really don't understand the trauma we go through bodily and mentally it's huge massive scary change in your life for us and our families. My husband is very depressed at the moment says he felt so helpless when I found out ... Finding it hard to be very understanding as I have always put myself last all our married life and feel for the first time I have to concentrate on myself. Life's just a bit sad at the moment sorry for going on thank you for being there Ash XXX💝 ... View more

Hi I'm new to this forum, have had 2 lumlectomys and then mastectomy last May. Radiotherapy and then on Letrozole which made me quite ill so changed to Exemestane since November  lasy year. Ok at first was so relieved  to have easier side effects but as time went on they got worse,  aches and pains in hands, feet  head, neck and shoulders. Felt like a very old lady I'm 65 but was doing so well before diagnosis, found on mammogram I felt nothing, its lobular cancer.  I have been so weepy and depressed like a shadow of myself, feeling like how can I be like this for 5 years or more,  Then my eyes started to feel not right very red and sore with sharp pains shooting through which really worried  me.  Rang breast care nurse who rang back qujte quickly sais had spoken to Doc and I shouks stop immediately  and have an eye test, had eye test and have dry eyes so drops 4 times a day opticjan saud probably caused by medication. Anyway to cut a long story  short,  saw Syrgeon lsst Friday who although had told me to stop rabs seemed to have forgotten and said none of my side effects were the Exemestane, I did argue a bit but was quite uoset at the way I was made to ferl like a moaner. She said if I decide to take no medication thats my decision and quoted percentages at me. Or to do exercise I have joined the gym but sometimes just havent got he energy to go and new ache in calves.. Having read threads I know that I 'm not on my own but was so low when I got home. Been off the tabs for  just over 2 weeks and already feel better. Help x ... View more