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  • arpiearpie Mid North Coast, NSWMember Posts: 3,756
    Fingers crossed, it is the beginning of the 'good sleep' period from now on, @[email protected]

    Doesn't it make you feel good when you wake up & realise you've had a good one!!
  • JJ70JJ70 FremantleMember Posts: 983
    Now that I am Sandoz brand (last 6 weeks) I think my insomnia is a little better...I still wake between 4-5am most mornings, but that is better than 2-3.
    The trade off has been more joint pain.
    Honestly, I can't even dress myself without feeling like a dozen little knives are hacking away into my right shoulder and left inner elbow...then there is the ankle pain...... I am hoping it settles down...........
  • arpiearpie Mid North Coast, NSWMember Posts: 3,756
    That's a real Bugger about the more joint pain, @JJ70, tho good that you are sleeping better !   :(    I hope it settles down for you too.  Which AI are you on?

    I am now on Anastrozole/Arimidex.  They tried to give me Ariana but I requested Arimidex.  
  • JJ70JJ70 FremantleMember Posts: 983
    I'm on Tamoxifen still @arpie...so hate to see what AIs will do to my body in future when/if i need to swap............. :(
  • kmakmkmakm MelbourneMember Posts: 7,871
    You probably will @JJ70. The people who follow at least two years of Tamoxifen with an AI do better from a statistical point of view, survival wise, at 5 and 10 years. But as ever, I'm not a doctor so ask your onc! K xox
  • arpiearpie Mid North Coast, NSWMember Posts: 3,756
    With a bit of luck @JJ70 - you may not get the bad side effects if/when you change ..... so don't be afraid of switching when the time comes.

    I am only 1  month in to Anastrozole/Arimidex & if it stays like this .... will be happy to stay on it (even tho taking some magic oil to help control the existing side effects from Letrozole & Exemestane.)  And ''technically' I am only gaining 1% less chance of recurrence ...... so will see how I go.   I also came from a strong arthritis background as well  .... so was already doomed re aches & pains in the joints!  :(  

  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,951
    edited June 2019
    @JJ70 I have been taking the sandoz brand since the start and it seems to be ok. 

    The gabapentin my oncologist prescribed seems to be helping. I can have up to 300mg per night but I find 200mg seems to do the trick and I haven’t had a temazepam in a couple of weeks. Still wake up sometimes but I think I’m getting a better quality of sleep and on the upside, even though it’s for nerve pain, it seems to be helping the joint pain in my ankles and feet a little bit. 

    Hot flushes seems to have receded a little bit too. 

    Can live in hope that things are normalising a little. Like u @JJ70 I’m scared to changing to an AI in the future. Better the devil u know. 

    @Sister congrats on the sleep!!
  • JJ70JJ70 FremantleMember Posts: 983
    OK @Kiwi Angel we are on the same Tamoxifen now - good to know you are OK on it. It does seem to be better  than the Tamosin for me. Although this joint pain sucks big time. I cannot straighten my left arm at all without grabbing it in pain, because I forget when it is bent it is just a dull ache that is manageable. Carrying heavy shopping bags is a nightmare or my big teaching bag to go to work. I think I need a nanna shopping trolley - you know the ones!! I actually saw some in Kitchen Warehouse that are rather nice, but my social conditioning of it being a 'nanna trolley bag' stopped me buying it. Perhaps the pain will win out......
    My right shoulder is actually quite restrictive. I am having to get help dressing. I can't cross my arm across my body without dagger like pain or rreach backwards (as you do to grab sleeves putting on jackets and jumpers). 

    Then there is the ankles........where do I start on those? Hobble...hobble....


    Sorry about the rant....woe is me


  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,951
    @JJ70 I feel u re the ankles. We are doing vivid in Sydney tonight so have my comfiest walking shoes on!!
  • kmakmkmakm MelbourneMember Posts: 7,871
    I couldn't sleep last night. After 2am ticked over I gave up and took a Temazepam.

    It doesn't matter how calm my conscious, rational mind is, the rest of my brain is picking at Tuesday's oncologist appointment like a 10yo with a scab.
  • kmakmkmakm MelbourneMember Posts: 7,871
    Back again. So wide awake tonight. And so much pain. My ankles are throbbing with it, deep and hot. I've taken my strongest painkiller in the hope that it will dull the ache and I can sleep. I'm also worried about an aching rib. It's ached since my BMX & DIEP recon. I asked the plastic surgeon about it at the time and he dismissed it in a very off hand way. Lately it's been worse, today especially so of course my mind has gone to a bad place.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,961
    I spent yesterday scrubbing walls and painting the ceiling. In someone else's house. Given the condition of Casa Zoff, there is a degree of 'WTF was I thinking ' going on at the moment. My neck is bloody killing me and climbing up and down ladders all day has my knees, ankles and feet screaming in concert. No good deed goes unpunished.
  • SisterSister Adelaide Hills, SAMember Posts: 4,538
    I painted most of the rooms in my house about 7 years ago @zoffiel - my neck has never recovered so never again (and that was before bc.  I feel for you.

    @kmakm That's not good.  Can you go to see your onc to see if a referral to a rheumatologist is in order (or ask to try prednisolone).  And get a scan on the rib if it's bothering you if for nothing else than to put your mind at rest.
  • arpiearpie Mid North Coast, NSWMember Posts: 3,756
    Yep - the judicial use of Prednisolone now & then, is similar to having 'time off' with the meds, but you don't stop taking it!

    Definitely well worth the ask, @kmakm

    @Zoffiel - I hope your neck comes good asap.  It is incredible how a crook neck can incapacitate you.

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