When do I go onto Hormone Therapy Tablets (Not that I want to)

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Locksley
Locksley Member Posts: 938
Hello, I've just finished 5 weeks of radiation last week.  (12 February).   At the moment I don't have an appointment booked with oncologist to talk about when I will go onto Hormone Therapy Tablets.   When the oncologist told me what chemotherapy I would be having.  He mentioned I would most likely go onto letrazole.   Is there normally a few weeks rest time or is this something I should have soon.   Just wondering if I need to follow up with oncologist or not?    
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  • iserbrown
    iserbrown Member Posts: 5,561
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    Follow up with Oncologist as it is part of ongoing treatment. 
    Best wishes 

  • Afraser
    Afraser Member Posts: 4,388
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    Check with your oncologist - I started Letrozole very soon after finishing chemo and while still on herceptin. But that may vary depending on your specific diagnosis and your oncologist’s preferences. Best wishes. 
  • FLClover
    FLClover Member Posts: 1,544
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    I started Zoladex at the same time I started radiation, and started Letrozole right after I finished radiation. Make an app to see your onco and see what’s happening 
  • MicheleR
    MicheleR Member Posts: 343
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    Hey @locksley,

    Im going on ais soon and as you know im still getting radiotherapy. My oncologist asked me to go to dentist to check jaw bones for an infusion to look after my bones and also a bone density scan to recommend the right ai i think. Would be worth asking the questions about what next. I have an oncology appt in next few weeks and still have 3ish weeks of radiotherapy. 

    I think we had similar treatment to date although different cancer situation. 

    Hope this helps.
    Michele
  • Sister
    Sister Member Posts: 4,960
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    I started mine as soon as I finished chemo and before I started radiation but your oncologist should let you know.  Please don't stress about going on them.  Yes, you will have read here how many of us have side effects but that does not mean that you will.
  • arpie
    arpie Member Posts: 7,667
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    Absolutely, I hear you, @Garnet7 .... it isn’t their ‘area’ so they really should keep their mouths shut!

    My surgeon said I would be on Tamoxifen.... but my Onc said Letrozole and I only lasted 6 weeks!  Then 6 months on Exemestane... and now ‘happily’ (or as happy as you can be!) on Arimidex for 2.5years now.  So don’t be afraid to try a different tablet if this one doesn’t suit you.

    I am also taking some magic oil (started it when I went onto the Arimidex) and I am sure it is taking the edge off my aches and pains.  

    All the best xx
  • arpie
    arpie Member Posts: 7,667
    edited February 2021
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    @Garnet7 I am so glad you are going okay on Arimidex. I come from an arthritis background so had the aches and pains before my diagnosis no matter which tablet i was on!  AIs just made them worse!  Grr  Let me know if you ever visit again!  We can meet up for a natter! Xx. I love my back yard. I love kayak fishing too so do that as often as I can!! I also run the local uke group so that helps keep me busy as well and they are great support for me when going through tough times. It is SO important to keep busy, doing what you love!!  Being idle mucks with the brain! 

    When you are ready, Jump onto  to the webcast on fear of recurrence ... it is really good. I’ve just watched it now. 
    Take care xx

  • arpie
    arpie Member Posts: 7,667
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    Cool.  It was good.  Hubby does jigsaw puzzles .... he is doing one right now!

    take care xx
  • Blossom1961
    Blossom1961 Member Posts: 2,394
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    I love jigsaws. I will stay up until 3am to complete one and I am not a night owl.
  • Mummy0297
    Mummy0297 Member Posts: 19
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    Hi Locksley, I started my hormone tablets - Letrozole 3 weeks ago ( 8 weeks post chemo and 1 week before radiotherapy). My radiotherapy oncologist said she doesn’t normally start her patients on it until after all the treatment is finished but my chemo oncologist thought different. Don’t panic about not starting yet - enjoy the break as we will probably be taking them for 5/10/15 years ??
  • Locksley
    Locksley Member Posts: 938
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    Hi I have now started taking letrozeole tablets. One a day for 10 years. Goodness me.  The packet says  may cause drowsiness and not to drive. I decided to take these at night because I still want to be able to drive.   Has anyone had any issues with driving.  I feel I am Clumsier. Keep knocking over water glasses.  Could be pn because i can't always feel the whole glass.
  • FLClover
    FLClover Member Posts: 1,544
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    I started taking it at night as well. Always around 9pm. But it didn’t necessarily help me sleep more easily. I do feel tired the next day, but no problem with driving. I’m now on Exemestane, and apart from the carpal tunnel I get the same side effects 
  • Afraser
    Afraser Member Posts: 4,388
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    I’ve been taking Letrozole for over eight years and haven’t experienced drowsiness. I take it at night and as I suffer from insomnia, a bit of extra sleepiness wouldn’t go amiss! I’m a dedicated non-driver, so can’t advise on that.  If you are experiencing a loss of feeling though, it’s worth getting it checked. Tingling, or pins and needles, is usually the first sign of PN but if you do have PN and it’s causing difficulty in holding things, you do need to let your oncologist know and see if there is anything you can do to lessen the effects (I found the suggestion of vitamin B helped a bit). Best wishes. 
  • Blossom1961
    Blossom1961 Member Posts: 2,394
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    I had PN in my toes. Five weeks ago I had a manual lymph drainage massage for a different issue and the PN pain in my feet reduced to barely there. Zumba is so much more fun now!
  • iserbrown
    iserbrown Member Posts: 5,561
    edited March 2021
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    Locksley said:

    Hi I have now started taking letrozeole tablets. One a day for 10 years. Goodness me.  The packet says  may cause drowsiness and not to drive. I decided to take these at night because I still want to be able to drive.   Has anyone had any issues with driving.  I feel I am Clumsier. Keep knocking over water glasses.  Could be pn because i can't always feel the whole glass.

    When I was first diagnosed by the Breast Surgeon he said you will be my patient for the next 10 years..........I became fixated on that statement and luckily my hubby was with me in the appointment to pick up on the couple of sentences I missed out on as 10 years was quite a shock as I was so green on what treatment and follow up was all about.

    Yes the 10 year regime is a little hard to swallow in the beginning as the thought process  is goodness, how old will I be then rather than oh okay!  Initially I started on AI through my Oncologist and was told 5 years but less than 12 months in, the timeframe changed.  On Monday I visited my Oncologist for review and I thought I would mention if there was any wriggle room on the 10 years...... he smiled and thoughtfully replied, 10 years it is...............
    At first, like some on the forum, I thought my body was rebelling and it was never going to settle.  I started taking it in the morning and then changed to lunchtime as it was the equalizer for me and allowed for good sleep in the evenings.  Now 6 years on and a few changes of medication later I am back to taking it at night, probably around 9pm every night.  I still have side effects, bone pain, leg cramps, however, they are nowhere near as bad as when I first started out and I have just over 4 years to go................not that I am counting, much!

    I think others have already said it, suggest you get that PN checked out and as Blossom said a lymph drainage massage has helped - I am a strong advocate for same.  

    Best wishes 
    Take care