Forum Discussion

Diannes48's avatar
Diannes48
Member
10 years ago

2 and half years later

Hi all,

Its hard to believe its been almost 2 and half years since diagnosis, its a new normal for me not that i like it much at moment, hot flushes, sleeping problems sore and painful bones, but this is normal for me now my Dr tells me and side affects of Tamoxifen, so i am doing my best to adjust and tried lots of natural stuff none of which seems to work much, i began bike riding to try and make myself tired but not much seems to help, i am back at work again as i broke my ankle back in May and has taken some 5 months to heal - hoping this helps to sleep a bit.

Do other women feel like i do ? it seems i wake up exhausted and go to sleep exhausted and can't sleep at all averaging about 3-4 hrs at moment and struggling to function in between, any advise would be appreciated.

I hope all the woman out there maybe just starting there journey will look after themselves at this time and take one day at a time, rest when you can and have supports around you.

Di

 

 

 

9 Replies

  • Catscrapcats's avatar
    Catscrapcats
    Member
    10 years ago

    Hi girls, been on the Letrozole/Femara for a week now and so far only finding it hard to turn off and go to sleep at night. Not sure if it's because I am not doing much physically or its the tablet because my radiation burns are still healing and it makes it worse if I get hot so trying to keep cool and doing things around the house. Not napping at all during the day and get up about 7 am and come 10.30pm I can't go to sleep. I do feel tired on and off through the day and find it hard to concentrate but fight having a nap. I have never really been into relaxation techniques etc as have always worked hard enough to fall asleep easily but anyone have any suggestions on tapes to listen too or something similar.

    Maria

  • RosG's avatar
    RosG
    Member
    10 years ago

    Hi Di - sounds like you are having a rough time with the side affects.  I have just finished treatment and am supposed to start on Arimidex.  I am seriously   considering not taking the medication.  Like Maria, I wonder if the side affects outweigh the 2%?  I don't know of anyone who hasn't taken them - bit scarey taking the risk.  Stay strong and good luck with your journey.  Big hugs RosG

  • Catscrapcats's avatar
    Catscrapcats
    Member
    10 years ago

    Hi Karenne,

    I just looked it up and yes Letrozole and Femara are the same thing. Have only taken two tablets so see how it goes. Yes I do have combine dressing, Xylocaine and Bepanthan given by the nurse at the Centre. Sounds like we went to the same place! 

    Thanks 

    Maria

  • KarenneW's avatar
    KarenneW
    Member
    10 years ago

    Maria, I guess if your on Letrozole its Femura.  I couldn't tolerate this, so went back to my Arimidex.  Interesting you only have to go 5 years as I'm on Arimidex for 10 and only have 8 years and 8 months to go (not that I'm counting or anything....LOL).  Reckon I might go to 5 and see how I'm going - I'm 60 now.  My knees hurt so much that I feel like a cripple.  See my specialist tomorrow (Wednesday) and going to speak with him about this and other stuff.  Never thought of the Panadol Osteo for the joints at night though.

    I empathise with you and your radiation burns as I too had quite bad burns, but fortunately they healed pretty quickly.  Do you have Bepanthan & Xylocaine (spl) as the nurse at Radiotherapy gave me these and also several large rolls of bandage and I used to spread the cream on the bandage then apply it to my skin.  I healed pretty quickly but still have a suntan..lol

  • KarenneW's avatar
    KarenneW
    Member
    10 years ago

    Hi Maryroseti, I sometimes get those weird cramps under my chin, but they dissipate quickly unlike the leg cramps that I get occasionally.

     

  • maryroset1's avatar
    maryroset1
    Member
    10 years ago

    Hey sounds very familiar. I went through a stage of waking up exhausted with restless sleep. We bought a new mattress a few months ago and it has taken some time to get used to it but seems to have worked a treat. Sleep much deeper now. Hot flushes still drive me nuts though all times of day and night.  my aches and pains are self inflicted so not sure whether tamoxifen related. I do get weird painful cramps just under my chin when i yawn which i never used to get. 

  • Glynnis's avatar
    Glynnis
    Member
    10 years ago

    Hi Di, like Karenne I too am on armidex, I take panadol osteo at night when I go to bed and helps with the aching knees and legs, I'm currently doing radiation but started the armidex about a month ago as had auxiliary clearance done with all nodes except one with active cancer after chemo, so started on armidex, sleep well at night and like Karenne I take mine in the morning when I get up, I hope all settles down with you. Glynnis ??????????

  • Catscrapcats's avatar
    Catscrapcats
    Member
    10 years ago

    Hi Di, 

    Am interested to hear how you girls are coping with the tablets. I realise we all react differently but the flushes and sore joints seem to be the norm at least at the start. I have taken my first Letrozole tablet this morning. I am 54 and had a lumpectomy and nodes removed, all clear and then 6 weeks of radiation treatment and now it the tablet for 5 years. Makes you wonder if it's all worth it for 2% higher chance of survival rate but I guess the only way to find out is not to take it and see what happens! I am still recovering from bad radiations burns under my arm and breast and will be able to get back to whatever normal will be. Sorry I can't help you Di but interested to know how others get on.

    Thanks Maria

  • KarenneW's avatar
    KarenneW
    Member
    10 years ago

    Hi Di, 

    I'm not quite to my 2 year anniversary, but like you I also had sleep problems.  I'm on Arimidex and was told to take them at night so that if you get any side effects you'll sleep through them......yeah right!!!  All they did was make me NOT SLEEP.  So in an event to get a decent nights sleep I switched to taking them first thing in the morning and I cannot believe the difference.  Within a week of the change I started to sleep really well albeit I get up to go to the loo a few times and often have a drink, but then I go straight back to sleep till the alarm wakes me at 5.00am to take my dogs out for their and my morning walk. 
    I too have the aching knees and am taking Krill Oil with Glucosomine which kind of helps, but still feel like a 100 year old woman.  Guess its a case of keeping on keeping on.

     

    xoxo

    Karenne