new to site

new to site

hi ladies this is my first post and yes i am new to the site ii was told back in octomber that i had invasive ductal cancer with lymph node involment i am e2+ her+ grade 3 i can't have any of the following treatments due to other health problems ie; emphysema and heart decease so i can't have any operations ,chemo or radio therapy , so been told that i will not have any cure for my cancer i been put on letrozole to hopefully control the cancer my mind is all over the place keep trying to stay positive . i am having side effects ie; bone pains and aches and really bad hot flushs seem to keep coming down with boils cold sores chest infections, which as left me feeling tired all the time. but then when i go to bed i can;t sleep feeling so low at the moment x

15 Replies

  • Hello lollypoplyn55

    Welcome to our group, I'm so very sorry to read of your diagnosis & the limited treatment options available to you.

    Have you had an opportunity to discuss this at length with your Consultant &/or Breast Care Nurse as this is a great deal for you to absorb.

    Have you looked on the Breast Cancer Care or Macmillan Website to see if there is any specific information on letrozole & its side effects? Also BCC & Macmillan have helplines with Trained Nurses who may be able to advise/help with any specific questions regarding your treatment.

    This is a lovely group of ladies if you need a chat but I also think you would benefit from help from Professionals with specific knowledge of your other conditions & the treatment options available to you.

    When do you return to see your Consultant for a follow up?

    Sending you much love &

    Very Best Wishes 💐

    Mrs N 💅🏼

  • hi mrs n i have spoke to mt breast care nurse also my oncologist n the only treatmjent is letrozole any other would kill me so it is the only choice i have . i am trying to put up with the side effects n got a good pain releif in line it is just the hot flushes i find hard to cope with but aye ho if it is keeping me alive then i must be grateful xxx

    i see my oncologist on the 8th of feb my wedding anniversary lol #

  • Welcome to our group. Sorry to read of all your problems, if you have any questions in relation to your cancer please post them here, no matter how silly they may seem I'm sure one of us will have an answer, have you looked at HU communities to see if there's any to help with your other health issues, I'm sure there will be otherwise all I can do is send loads of love and hugs your way xxx

  • Hello and welcome. What a list! You poor thing. I don't know anything about letrozole but I have found comfort in this group. We are all experiencing different elements of breast cancer and so are very good at helping each other with information and support.

    I hope you find something that helps you feel better soon.

    It looks like you have good company in your dear dog! My mum is disabled and couldn't manage her dog after 2 years and she had to give it up 18 months ago which was a great shame. She used to travel around on my mums scooter too. My mum still goes over to the park without her dog and meets up with the other dog owners which cheers her up. Hopefully this is something you can do too?

    With best wishes xx

  • hi debster i only wish i could take kmy little nev out on the scooter but sadly he was run down after slipping is collar when my hubby took him for his last walk off the day he managed to hold on till hubby got him home n sadly he died in my arms i so miss him so much he was very loyal n very special little dog x

  • Oh dear lord I am so so sorry 😭💔. Poor wee thing sending love xx

  • tysm xxxx

  • Hi

    I'm glad you have good pain relief & hopefully the side effects may improve with time. Maybe some of the ladies in the group who are on letrozole may be able to offer you some hints.

    I hope you get on ok when you see your Oncologist, please let us know.

    Very Best Wishes

    Mrs N 💅🏼

  • ty mrs n wil do x

  • Hi there I have been on letrozole since the beginning of November, I can pretty much identify with all of your symptoms. I am hoping it gets easier over time. I have found that drinking plenty of chilled water seems to help with the hot moments. I don't go anywhere without a bottle! If I find anything else that helps I will let you know.

    Take care and best wishes Louise xx

  • ty louise xxxx

  • Sorry to hear of all your problems xxx I gave been on letrozole for over 6 years .. I also have all the side effects , it does get easier , not sure if it's you that just gets used to the side effects or your body adjusts to them ... But good luck . X

  • Hi lollypoplyn55, and welcome. I am so sorry about your diagnosis and that your treatment options have been so limited.

    In my first months on Letrozole I had more of the extra tiredness. The bone pains and stiffness set in for a while, then get better for a time, then come back -- making some cycles or phases of their own, I suppose. I usually have to drag one leg, zombie-like, for a time when I get up after being down for a while.

    Besides the aches that may make you need to turn regularly when you are lying down, the warm flushes may alternate with chills to interfere with your rest too. Keep a cool drink at your bedside and plenty of lightweight covers spread over yourself and your bed. If you get too warm under them, you can push them away or take off just enough for long enough to vent away excess heat until you feel the need to be covered up again.

    As we know very well, serious chronic illness is tiring. Letrozole is tiring. Stress is tiring. Minimize stress as much as you (practically) can. Avoid people who tire you.

    The Letrozole is some powerful stuff. Every time you are experiencing some bothersome side effect, I want you to find it a cause for some hope, some gladness -- because if you are having side effects from it, it is working.

    I use mobility appliances too.

    We all understand about the thoughts that make it so hard to get any sleep.

  • Hi kewpie

    What a lovely & helpful reply to lollypoplyn55 💐

    Bless You

    Mrs N 😘

  • lollypoplyn55, I have just found this article, and am thinking you might be a candidate for this surgery. Have your Doctor contact this surgery team.

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