Breast Cancer Care Forum

I have stopped Letrozole after 10weeks. i had constant migraines two were so bad I was taken to A&E as lost use of left leg and arm on two occasions. the Bones in my feet became so painful I couldn't walk and I had vertigo which left me unstable on my feet. i lost my appetite and felt sick except for the last thing at night when I was able to eat a little.  Have lost 10kg. But the most worrying and dangerous SE was my low mood - so very low I considered I would end my life and had a plan I  got help and was admitted to hospital for a week. i got out three days ago. it has been two weeks now since I stopped and I can feel the SE going and feel more like my old self. i am not as,tired - I already have ME so tired a great deal of the time. i was always worried about taking an AI drug with my other health issues. i have looked into alternatives- changed my diet,and know that my life expectancy may well be less if I don't take the drug but I would rather have quality of life than quantity. i know my oncologist will suggest I try another drug and I am terrified the same will happen again.   ... View more

Sorry my last post said 2years instead of two weeks  I can't imagine taking this for two years !!!  ... View more

I am also wondering about this drug  I have had ME and Fibromyalgia for 30years now but finally had managed to cope with part time work and freelance arts projects which I love. I had a lumpectomy and stage 2 Grade 2 invasive ductile cancer with 3 lymph nodes positive and was recommended Chemo and Radiotherapy plus Hormone therapy  I am 53 years old and refused Chemo as my immune system would not cope with it and the benefit was 6% over 10yrs in terms of life excpectancy. I have 73% chance of being here in 10years according to Predict without letrozole . i have only taken it two years and feel dreadful  it is like having ME all over agsin  muscle Aches - joint pain - fatigue - headaches and loss of appetite and anxiety  i feel dreadful and needed to be ok as returning to work this weekend so couldn't take them as never would have coped. I felt better could walk - bend over - use my arms - keep awake and work and enjoy it. i feel that as there is no guarantee that this drug will work and my quality of life will be seriously affected again. I have agreed to persevere but have looked at alternatives- diet / supplements and exercise  I know others who will not agree but it is our choice and nobody can force us to endure these SE  Also stress and depression can make the body produce Cortisol which in turn can over time contribute to cancer recurrence. i have had severe  depression and anxiety before and fear that this drug and its affects will bring it back which is to me as scary as cancer.   ... View more

I coloured my own - pink at the ends for breast cancer awareness  it was fine  had a trim last week was shocked how many grey hairs have appeared since my diagnosis  but at the routes - so have not tackled them as yet but the dyed bit is fine  feel a bit like a tabby cat lol but having my hair cut removed all the dry ends from treatment  ... View more

So pleased for you Whytefawn well done :)  i have two more left had 13/15  and finally with the help of steroids and morphine managed to endure the pain of having my arms in that position !!  Without this and the excellent support from the team and oncologist would not have been able to endure it all one eve in A&E on morphine for the pain was enough. MRI to investigate what muscles I have pulled  do have less function in my arm but this will get better I'm sure  my skin isn't too bad but redder on the shoulder area SCF area  had a lift today and for the next two days so the whole thing takes 3hours round trip not 6hours soooo pleased  shall even make a trip for a coffee and look at charity shop tomorrow before the zaps  i realise I have false energy on steroids I haven't been able to sleep till so late it will end  but having ME and for all of us I know that once the steroids end I shall be knackered. nearly there  good luck to you all as you get through each one -  Liz xxx ... View more

In the end was prescribed steroids and morphine  i had to go to A&E one evening  saw oncologist following day - morphine  following day another oncologist- steroids - they worked within 1 day enough to hold the position  I had an MRI today to see the reason but I'm sure it's due to being in position  only 2 more to go - but bearable  has left me with some weakness in the arm i stuck every day to my excecises before Rads  thanks for your support  Means a lot  liz  @BizzyLizzy wrote: I am suffering with a frozen Shoulder and only on number 6 of 15 Rads  i stuck and have been sticking to my exercises and therefore I am so upset this has happened  I am left handed and my surgery was on my left hand side  not on,y is my movement seriously affected but getting into the correct position for Rads was excruciating today  I have ME and very fatigued with waiting for hospital transport meaning I am out of the house 5/6hours  plus on tramadol for pain which is totally wiping me out. still 9 more Rads -  i feel like I just can't endure the pain and feel like calling it a day with Rads  i declined Chemotherapy as my body and immune system are already so damaged - I had lumpectomy and axillary node removal 11 nodes 3/11 showed cancer. if I stop now I am going to seriously reduce my chances :(    ... View more

hi there and thanks so much for your kind messages  I endured 9th Rads yesterday and saw my oncologist who has prescribed morphine and also steroid tablets  I am going to have a MRI scan to see what is happening to my shoulder hopefully today  Tuesday evening it was so bad I had to go to my local hospital and was given IV morphine which helped  I could still feel the pain but was too out of it to actually care !  They are thinking it is the position we have to lie in and having ME is contributing to making it so much worse number 10 today and determined however much pain I'm in that I shall have it as want the whole experience over asap ( sure I am not alone in this as know we all do ! )  thinking it may be a rotator cuff injury:(  funny thing is my skin isn't too bad at all - some pinkness but not too sore - shouldn't tempt fate. hoping we all get through this as well as possible x    ... View more

Hi feel again like the voice of doom "" im having number 7 today of 15  i have developed the worst shoulder pain - think it's from the position we have to lie in and my ME  been twice to GP  cant use my left arm properly or write infact the whole arm I'd useless and I am left handed  hopIn that the Rads haven't damaged my nerves - as having shoulder and breast Zapped !!!  Full of opioids / naproxen and voltarol gel but excruciating and thinking this may be the last I can endure  juat cant do it :(  ... View more

5th Zap done -10 to go I'm having the minimum do feel for you all who  are having more zaps  have a really stiff and very painful shoulder - also was given a new drug by my Gp to help with my anxiety/ depression poor sleep and appetite loss however  i cant take it as so so sedating and made me even more fatigued with my ME that the radiographer offered to use a wheelchair to take me back to get transport legs like jelly and dizzy like I had been out on the lash  i really didn't want to use one as it has been many years since my ME diagnosis since I couldn't walk so was determined to walk - I cannot keep my eyes open  I'm hoping it's the drug and not ME related but could be the Rads but too soon at this point - so again I'm so anxious how it will be in another weeks time !  the journey today there and back and treatment time was 4hours - better than 5/6 hours the other days  i feel like the voice of doom on this forum  sorry to be such a total misery prior to this I really wasn't like this infact I was a actually good fun !  Nat thanks for your message -  lesley sorry about your soreness and redness sounds awful  ... View more

Spent my birthday having 3rd session today - think due to having ME I am struggling with total fatigue ,  dizzy and already red - I am fair skinned. i know fatigue is common but seems out of proportion with the small number of Rads. Getting hospital transport as it is 30miles away and involves motorway and I am just too tired but this is on average a 5/6 hour round trip. drinking plenty of water and using E45 lotion. didnt expect to feel this dreadful so early on so very agitated sadly. ... View more

Thank you all for your support  it's so good not to feel so alone with this all  we are the only ones who have an understanding of how it feels even though we all have our experiences to deal with .   ... View more

I start Rads in the morning and feel that I have in my usual anxious state built it up to be so much more scary than in reality it may be -  have good movement and can breath hold as it's on the left- but the whole environment of the hospital in it's self is so depressing which of course it will be as it is a cancer treatment centre and there are so many people less unlucky than me and I feel guilty. as I have ME and am already tired after two surgeries and the numerous appointments we all have to go through I am a worried about the fatigue that so many describe and how this affect me as well as the side effects of the Rads. i have my Aloe lotion and E45 and am prepared to drink the recommended 3Litres of water. think after the first treatment I may not be so fearful. hope all of the rest of you are doing well as expected x  ... View more

Meet friends and go out somewhere or have them over ? Maybee go to see a film I live art so been trying to do a bit of that But don't get too tired I too like you was very anxious - but on the actual day in the morning eventually it was happening and all the anxiety went as I knew something was actually going to done and no more waiting . ... View more

Dear Sunflower  i like you had never had an operation apart from my wisdom teeth 30 years ago and I was very anxious about it all. i also can relate to the " what's all the fuss about feeling " I almost felt a bit like a fraud for a few days. i had a lumpectomy and sentinel node removal. the staff were so kind and guided me through it all - I had to have a guide wire inserted but I don't think you are going to have that. it all went past really quickly and the whole day was a bit of a blur -  afterwards I really stuck to doing the exercises which the physio explained and I am glad that I did really stick at them. my operation was on 9/2/17 I got cropped tops to wear afterwards and a sports bra which I wore in bed to start with. I find walking is good for me and when recovering it may take a while for all the anaesthetic to wear off so pace yourself. good luck with it all and look after yourself  it is the most weird place emotionally and the wait for the results was stressful for me - plus all the things you have to do and appointments can feel overwhelming at times  Take care  Liz  ... View more

I am on venlafaxine have been on it for depression for years Will be strarting Anatrasole after Rads I take 225mg a day for depression not for the breast cancer treatment/ side effects However I do know that since my dose has increased I have such bad insomnia Loss of appetite too. But glad it is helping I have been on it 10years and compared to other drugs it has less side effects and is tolerated better Good luck x ... View more

I am supposed to start anastrozole in three weeks I am post menopausal Stopped HRT Had surgery Radiotherapy due next week I am reading so many horror stories about it I have ME and Fibro and already fe l tired and very stiff which scares me too and will wreck any quality of life if it gets worth. I am not sure I want to take it for the extra % gain in life expectancy which in my case is low according to Predict ... View more