SUFFERING STOPPING HORMONE TREATMENT FOR MENOPAUSE

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  • JodieMaree
    JodieMaree Member Posts: 14
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    @cactusk How did you go? I’ve started radiation, hope you didn’t need to get chemo. 
  • nicmaree
    nicmaree Member Posts: 28
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    @arpie I’ve just read your comments about - 5 years later with underarm numbness and nipple pain.
    My nipple was removed and re attached during surgery. I have underarm numbness . Some days more than others. 
    That all makes sense now. I mention it to doctors and nurses but none have given as good an explanation as you. 
    Thank you  xx 
  • cactusk
    cactusk Member Posts: 58
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    @JodieMaree
    I am very lucky in that my oncotype came back with a very low score (10) and so no chemo for me.
    I was elated for 2 days, then crashed on Sunday. I think it was the combination of everything starting to catch up with me.
    I go for my radiotherapy 'measure up' on Thursday at Chris O'Brien lifehouse (part of RPA here in Sydney) and then rads will start about 2 weeks later. My rad onc is from the 'newer' school - she has recommended 15 days (as opposed to my first rad onc who suggested 25) with slightly higher - I want to say dose but I'm not sure if that's the correct terminology.
    @nicmaree I have a lot of numbness still. From under my arm all the way to my nipple. It is slowly getting smaller but still quite a swathe of skin has no sensation. I'm sure it will take time.
    Other than that, my mobility is really good. Have been back in the pool twice (so far) - not my fastest 1km swim but that's OK.
    I taking notes from a bunch of threads and keeping a list to ask questions when next I see the doctors. 
    10 weeks today that I found a weird dimple on my right breast - so weird that it's really not that long ago, but in 10 weeks so much has happened. 
    I'm riding the 'I'm so lucky I don't need to do chemo' wave for as long as it lasts. There's already been moments of 'what if'.
    I'm also seeing the Menopause clinic next Monday at RNS. I'm really hoping that they will be able offer some alternate options to HRT, or at least some strategies / options to tackle the most full on side effects - which for me are insomnia, joint pain, feel constantly like a cranky pants, and of course, the 'power surges' (aka hot flushes). Also went to the dentist today to ensure that there are no potential cavities so once radio is done, I can take bisphosphenates for perhaps 1 year (along with the other endocrine therapy drugs). 
    And..... exhale. 
  • Cindi
    Cindi Member Posts: 134
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    @cactusk,

    I'm so happy for you that you don't need chemo!! :)

    Good luck with the radiotherapy and at the Menopause clinic. I hope the clinic can help you.

     I still get the hot flushes but the aches have gone since starting CBD oil thank goodness, and sleeping much better. ( most of the time) and I know I'm much calmer now.
    But the hot flushes, I now permanently carry around with me a tiny electric fan in my hand bag!!

    Is it really 10 wks, it doesn't seem like it and same for me, can't believe it was in September when I got diagnosed, so much has happened but it's gone by fast.

    Lets hope 2024 is a better year.
    x
  • nicmaree
    nicmaree Member Posts: 28
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    @Cindi I hadn’t thought about CBD oil? Do you only take at night to help with sleeping? I have to talk to some about these hot flushes. I permanently have one atm. I went cold turkey on hrt beginning November as soon as got BC diagnoses 
    Any other good suggestions on stopping hot flushes? 
  • JodieMaree
    JodieMaree Member Posts: 14
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    @cactusk, so happy you don’t need to have chemo. My results came back that chemo would only give me a 3% improvement, but radiation was 90%. Talk about “phew” lol. I wish I was only doing 15 sessions, I would be half way through by now.

    I don’t know if they mentioned holding your breath during treatment or not, I can go 50 seconds now, could barely do 25-30 when I first started practicing. Ask about it at your mapping. 

    Time is weird at the moment, diagnosis seems so long ago, other days, seems like yesterday. Good luck with your treatment. Hope you get some relief with the menopause clinic. I’ve found the low dosage anxiety medication has helped me. Hasn’t helped with the hot feeling on my chest and side though from treatment.

    @Cindi the hot flushes were doing my head in after stopping HRT. What is CBD oil? 
  • Cindi
    Cindi Member Posts: 134
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    Hi @nicmaree, I'm sorry your hot flushes are so bad, unfortunately I don't know of anything that stops them, maybe a visit to the menopause clinic ? Maybe the CBD oil helps? I think mine have become a little less ( I also had to go cold turkey after my diagnosis) ( not fun)
    Are you in Crowsnest Sydney? the chemist I get my prescribed CBD oil from is a compounding one there at Crows Nest !
     I have the CBD oil twice a day then at night an hour before bed I have a small dose of CBD with THC in it as that's better for sleep.
    x
  • Cindi
    Cindi Member Posts: 134
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    Hi @JodieMaree, the CBD & CBD+THC  are medicinal cannabis oil, not easy to find a sympathetic doctor who will prescribe this, but there are some out there.
    I think the CBD oil may have helped some what with the flushes as mine aren't quite so constant now, but my little battery fan is wonderful for cooling down when one comes on, I carry it in my handbag everywhere :smile:
  • arpie
    arpie Member Posts: 7,667
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    @nicmaree - I am pretty sure that @Blossom1961 put up a post re meds for Hot Flushes .... hopefully she will jump on soon & provide that info again, here xx


  • nicmaree
    nicmaree Member Posts: 28
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    @arpie thank you xx 
  • arpie
    arpie Member Posts: 7,667
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    Found it - but couldn't see the name of the meds ....
    https://onlinenetwork.bcna.org.au/discussion/comment/217762#Comment_217762
  • nicmaree
    nicmaree Member Posts: 28
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    @arpie thank you x 
  • Blossom1961
    Blossom1961 Member Posts: 2,394
    edited January 11
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    Sorry I wasn't on earlier. I was having a 'delightful' colonoscopy. Citalopram 10mg. It is actually used for mild depression but with a much higher dosage. The dosage for hot flushes is quite small and I actually halved it as it gave me mild nausea. All the best.
    I was able to stop this medication after a couple months as my body had readjusted. I still get hot flushes but not near as many and very mild.