Night Howls

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  • kmakm
    kmakm Member Posts: 7,974
    @kitkatb Thank you sweets.
  • kmakm
    kmakm Member Posts: 7,974
    Ankle and leg pain too much tonight. I've taken an Endone. Sleep well Howlers. K xox
  • kmakm
    kmakm Member Posts: 7,974
    When do you stop having cancer dreams?
  • arpie
    arpie Member Posts: 7,521
    My heart goes out to all who have friends who've been diagnosed as terminal .... with a bit of luck, your friend may benefit from some ongoing research in the next few years, @kmakm.   2 ladies in my uke group are terminal - one mets colon (only diagnosed this time last year) and the other breast mets (surgery 15 years ago.)  Another kayak buddy, from mets prostate, diagnosed the same week as me.  He is no longer on any treatment - just relying on staying fit & eating specific regime of food, which he believes is holding his cancer at bay, tho if any trial comes along that may assist him, I am sure he'd give it a go.  

    It is heart breaking - but they are the most resilient people - who are getting on doing what they love doing & appear not to be bitter & twisted over drawing the short straw.  They are all lovely people who do not deserve to be in the position they are in. 
  • iserbrown
    iserbrown Member Posts: 5,540


    @Sister
     I had a week in Darwin in July 2018 I loved it .... 
    This trip is to see if my boys like it ... I want to move to Darwin boys are attached (autism) still so they would relocate if I do go. So I need to see what they think


    Just catching up on reading posts - I hope your trip to Darwin was a wonderful experience - it is the sort of place that one could settle into quite easily in my view! 

  • iserbrown
    iserbrown Member Posts: 5,540
    edited March 2019


    First ever UTI - was hoping to get through life without that pleasure. Felt quite sick all week and it wasn’t until the peeing thing kicked in last night as I realised what it was. What is going on with my body  :smirk:

    We were heading into Broome when I got my first ever UTI!  Nurses at Broom Hospital were fab and gave me antibiotics but also suggested URAL sachets (gave me some) and to drink Cranberry Juice.  Worked a treat and haven't had one since, that was 2000.  I am mindful and every now and then get into the cranberry juice
    Hope yours is now under control - just catching up on reading posts
  • Blossom1961
    Blossom1961 Member Posts: 2,362
    Re: UTI’s I put a post in another thread. Hiprex works wonders.
  • JJ70
    JJ70 Member Posts: 983
    I have decided to take a break from Tamoxifen. I went and saw my oncologist (thanks @kezmusc for all of your advice and answering my questions).
    Taking a break for a month - to get this brand out of my system, to then try the next. perhaps there will be less side-effects. Dosage can't be played with, with any guarantee that 10mg instead of 20mg will be beneficial.
    It seems the first two years is crucial, the next 3 are also highly important - taking it to 5 years. After that - there have been some studies done on year 6-10 on this MF (yes that is mother fucker) that you can take it for 9 out of the 12 months and it makes no difference to cancer recurrence rates.
    The longevity of this makes me cry..........
    Have just done a blood test to see if I am now naturally menopausal. If so, I can transfer to AI's - although they seem to be generally a hell of a lot worse for most.

    My main side-effects from Tamoxifen, the ones that I find debilitating on a daily basis are: Muscle aches and joint pain (especially feet), insomnia and fatigue (onc says this may not be strictly to do with Tamoxifen - but it could be making it worse. Having this month off will shed more light on that) Fatigue could be due to being so busy with the campaign, back at work and running the household and let's face it insomnia tendencies has been a thing since diagnosis for me - as it has been for most of us here on Howlers.
    I get hot flushed too - but I seem to be able to cope OK with those - it is when they wake me up at 4 am and I can't return to sleep that make them a problem!
  • arpie
    arpie Member Posts: 7,521
    All the best @JJ70 during your break from Tamoxifen - I hope that the side effects drop off totally so that when you do start your next regime, that you can start the next tabs from a clean sheet.  xx
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    @JJ70 you sound like my tamoxifen twin. My joint pain is worst in my feet and ankles which sux when we are both runners. I get the Insomnia that I am just basically learning to live with now and the fatigue. My hot flushes aren’t too bad but the night sweats suck and then like you, if I wake up I can’t get back to sleep. I am menopausal but scared to take an AI as it’s better the devil you know. I’m going to try to at least stick it out for 5 years. I hope that your break works and makes u feel better - u will have to let me know how quickly the side effects wear off. 

    @iserbrown seems to be under control now - have added cranberry tablets to my regime. 
  • Afraser
    Afraser Member Posts: 4,352
    Just check the cranberries perhaps / may be fine but note below:
    • Medications changed by the liver (Cytochrome P450 2C9 (CYP2C9) substrates) interacts with CRANBERRY

      Some medications are changed and broken down by the liver.<br /><br /> Cranberry might decrease how quickly the liver breaks down some medications. Taking cranberry along with some medications that are broken down by the liver can increase the effects and side effects of some medications. Before taking cranberry, talk to your healthcare provider if you take any medications that are changed by the liver.<br /><br /> Some medications that are changed by the liver include amitriptyline (Elavil), diazepam (Valium), zileuton (Zyflo), celecoxib (Celebrex), diclofenac (Voltaren), fluvastatin (Lescol), glipizide (Glucotrol), ibuprofen (Advil, Motrin), irbesartan (Avapro), losartan (Cozaar), phenytoin (Dilantin), piroxicam (Feldene), tamoxifen (Nolvadex), tolbutamide (Tolinase), torsemide (Demadex), warfarin (Coumadin), and others.

  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    @Afraser thanks for that. Have found conflicting reports but am seeing my oncologist soon so will discuss with her. Bloody interactions with everything!!
  • JJ70
    JJ70 Member Posts: 983
    We are Tamoxifen twins atm @Kiwi Angel...I'm with you...important to stick this out for 5 years. That extra 5% this is giving me just adds extra psychologically. If I stop taking it and get a recurrence I'll never forgive myself - not know if Tamoxifen would have kept it at bay....
  • Afraser
    Afraser Member Posts: 4,352
    Bloody interactions indeed! I was warned off cranberries when I was briefly on warfarin, no idea if it does anything with Xarelto, but I eat them only occasionally and don't particularly like cranberry juice, so no sacrifice there.  But what doesn't go with what needs its own Tom Lehrer song!