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  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952 ✭
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    @Romla great to get a review on it. I’m hoping it will help with my arthritis and any possible aches from tamoxifen when I start it. Does have anti cancer properties too which is a bonus. 
  • Romla
    Romla Member Posts: 2,092 ✭
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    Could you let me know how you get on with Curcumin please ?
  • kezmusc
    kezmusc Member Posts: 1,544 ✭
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    Yeah @Romla it is actually Krill oil that I;m taking, just couldn't remember the name of it before. Poor whales. 

    So I have been taking this concoction for about 10 months and It's done bugger all anyway for the joint pain.  Just had to go and spend another couple of thousand dollars on another mattress (bought one just before diagnosis) so my hips can hopefully stop freezing up in bed.  Can't afford my stinking scans now, they'll have to wait coz I really, really need some sleep.

    Sorry if I sound pissed off but I would really just like at least one definitive answer on something along the way. Here take this it will help, or not don't take it because it will do do this. Not the constant "we have no idea really" if anything will effect or help anything else

     Any way I'm coming up to week 13 of Tamoxifen and this last week has been a really hard slog. Nothing I take seems to help and I got a F*****g head cold as well (so much for all the vitamins)  First time I've been sick in about 3 years.

     I have only managed one day at work this week so far and have had to cancel all my weekend riding lessons due to brain malfunction, I think I have yelled at everyone in my family today and I am sitting here with a monster anxiety attack trying to string sentences together and work out whether I want to scream, sweat or go howl my eyes out in the shower.

    The other option is a glass of wine, a cigarette and go talk to the dog. That could be the winner. 

    So tapping out of the drugs again and I think I'll ditch everything else as well this time around.  Apologies for the sad rant but thanks for listening. 

    xoxoxo





  • Romla
    Romla Member Posts: 2,092 ✭
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    Am sorry to hear how tough things are atm @kezmusc and am ok with a rant - we all do it at some point.So rant away if you need to - all good.

    I didnot do chemo and am on Letrozole after radiotherapy.The first few months joint pain and aches were a problem esp in the morning but once I got moving they eased down a lot.My sons were basket ballers and I remembered with some injuries they were told to keep walking on the side of the court  which I thought harsh at the time but we learnt you could walk thru some injuries if you kept moving. That’s basically how I tackled the first few months on Letrozole- a daily one hour walk sometimes 2 and not sitting around too much as things would seize up. I found 10-15 minutes I could push thru it and I am no athlete. 

    I also did a gentle stretch/balance class twice weekly which was brilliant as it worked on every joint from head to toe.My first class was the day after radiotherapy ended and I went home and slept the afternoon whilst people many years older than me went off to morning tea - I was quite embarrassed. My surgeon swears by yoga and he is 50+ with a very busy practice and fits in a walk between the two hospitals he works at and his practice - think he uses it for thinking time as well as to relax.

    I have read that those who have had chemo have a rougher ride to begin with because chemo drugs wreak havoc on the body including the joints but I really believe you can get through this if you make sure to keep moving.Not easy on a wet winter’s day plus the cold plays it’s own havoc on our bones.My first walk had a steep part which I found hard but gradually it got better possibly as I got fitter.

    I hope supplements help - I take Krill Oil daily since Hormone Therapy started but can’t say if it’s helped as have not been off it.I also take Caltrate Bone and Muscle Health but learnt Calcium not great for the heart so am switching to just Vitamin D3 based on the Herbs app. I have osteoporosis and have 6 monthly Prolia jabs since commencing hormone therapy to avoid another fracture.But I don’t think Tamoxifen causes bone thinning like Letrozole. I have heard some good reports about Curcumin for joint pain which might be worth reading about on the Herbs app too.

    Not sure what else I can tell you but am more than happy to listen and answer/ share anything that might help.My strongest advice from my experience with Hormone Therapy is try to keep mobile and physically active as it has made a big difference for me - a former couch potato who’d rather read a book than exercise.Best wishes. XO
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952 ✭
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    @Romla. I’ll let u know how I go with it. @kezmusc maybe curcumin could be worth a try for u. Sound like u r getting to that time when u need to take a break - it the meantime wine, a ciggie and a deep and meaningful with the dog sounds like the next best thing. xoxo
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    Having had really strong ankle pain come on with Letrozole, I'm trying Krill Oil as suggested by my oncologist. She said some of her patients had found it helped. I'll take it for two weeks and then stop to see if I can observe any difference. I've been taking it for two days. No change yet! I shall report back.
  • Sister
    Sister Member Posts: 4,960 ✭
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    I can't remember the dose but my GP had me on Krill Oil a few years ago for joint pain (she never took me off it - I'm just very bad at taking supplements) but I do remember that the dose had to be quite high to make any difference.
  • Romla
    Romla Member Posts: 2,092 ✭
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    Yep I have noticed there are 2 dosages of Krill Oil 1000 and 1500.Wonder if the Herbs app has a suggested dosage?
  • kezmusc
    kezmusc Member Posts: 1,544 ✭
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    Thank you ladies,  rough day yesterday. I appreciate being able to vent on here. Anyway a bottle of wine later and I finally got some sleep, so feeling a bit better this morning.

     @Romla the Krill oil I have been taking is 1500mg and I would have hoped that after 10 months it may have started to help.  I do a lot of walking both at work and when I teach riding I can be walking for three or four hours at a time.  The day time is not really a problem as like you say, while I'm moving everything is ok.  It's the night time laying still watching telly or in bed that's the issue.  Combine that with the hot flushes and sleep is difficult. Plus Tamoxifen can give you insomnia anyway.  

     I am going to have a couple of weeks off everything then introduce the supplements one at a time and see if I can spot any difference over the next few months when I go back on it.

    So I am off to paint my bedroom (climbing up and down the ladder should get everything moving) and see if I can distract my mind from itself...LOl.

    Thank you again.  xoxoxox
  • Eastmum
    Eastmum Member Posts: 495 ✭
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    Glad to hear you're feeling a bit better this morning @kezmusc - it's the absolute pits when you feel pretty good during the day and you climb into bed exhausted, so looking forward to the comfy mattress and doona and then the night just deteriorates from there - so disappointing! Do you ever try a mild sleeping tab? Might help just to have one or two good nights? 

    Careful up that ladder! xxxx
  • Romla
    Romla Member Posts: 2,092 ✭
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    Just a small thought - have you tried taking the Krill after evening meal as that seems to be when you have most problems ? Also I know from experience the old antihistamine Phenergan can be quite an effective sleepinducer .Is an over the counter drug too in case no script for anything else. I had it in Cairns one year when badly bitten by sandflies and knocked me out for 12 hours - fixed the problem too !
  • melclarity
    melclarity Member Posts: 3,506 ✭
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    It does affect those who have been through chemo more yes @Romla as in most cases there is an element of neuropathy, so the AI exacerbates all of it, Im quite active these days...BUT it doesnt change the pain in any way as the damage is irreversible I was told and the AI well its renowned for its symptoms, so the Onc said that's all folks lol. I know there are alot of people who don't want to take anything at all, but I have to say even 2.5yrs post chemo now I have days that I have to have panadol osteo. All the vitamins in the world will not fix the problem...they may help alleviate a little. I believe I am better to where I was purely by the magnesium daily. I used to take Krill oil for years prior to this, but it never did anything. All the research in the world is great but again everybodys DNA is different and not everything works I guess. I'm questioning having taken Vit D now for 2.5 yrs as i have recently developed high BP on top of high cholesterol which that only began after taking AI's. Can't win LOL. Just as well I have a sense of humour because honestly.
  • Romla
    Romla Member Posts: 2,092 ✭
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    Chemo really does create havoc - just dreadful.Have had 3 ops in the past 5 weeks and must be lucky as my blood pressure is still excellent and have been on high dose Vitamin d nearly a decade because of osteoporosis.But my formerly good cholesterol more than doubled after starting Letrozole- am hoping Krill and low dose aspirin will help as refuse to back on statins because of side effects . Guess we can only try things and see what works for us. 
  • melclarity
    melclarity Member Posts: 3,506 ✭
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    Isn't that interesting? yes my cholesterol only went through the roof once I started taking Arimidex and now Im on Aromasin and the Oncologist basically said well take something for the cholesterol, really made me mad! So I believe its causing it too. You know Ive always had perfect blood pressure so it makes no sense all of a sudden it's high, so odd. I see my GP today to see latest reading on bloods and see if I have to go on BP meds uuugh!! I dont want anymore pills!!!! 
  • Romla
    Romla Member Posts: 2,092 ✭
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    @melclarity high cholesterol is documented as a side effectof Aromatase Inhibitors- do be careful with statins as a cholesterol lowering medication though - talk widely to others who have/take it- there was a lot about them in the media 2016 and problems people had with memory  and communication .

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