Another bad start to the year

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  • arpie
    arpie Member Posts: 7,521
    So it is Letrozole for me too!!  I'd geared myself up to being on Tamoxifen (which was the only one mentioned from Jan to now!)  LOL  Slightly different side effects - more joint related & it can impact your bone structure (more breaks!) so will be having a bone scan soon too.  Other than that - everything is just going on 'as normal as can be'!

    I am seeing Giovanna - a lovely Onc Fellow who has recently joined Taree Base Hospital & works with closely with Ted Livshin (he dropped in to reinforce Giovanna's discussion with me.)   She was working closely with my Rad Onc in Port Macquarie for a few years who recommended me to see her - and is setting up an office in Forster later this year too.  My Met BC friend is also having her as HER Onc!!  We are only 1 day apart from tablets (tho she I think is on Anastrozole - or something else that sounds like a girl's name!)  I dropped in on her & hubby today & she is going 'OK' & has a very similar outlook to the whole things as me - It is what it is & you've gotta get on with it.  Onwards & Upwards!  All 3 of her kids came down this weekend to stay with them (one from Darwin!) and they are a tight knit family, so great to see that support.

    Many Thanks @Romla  - I am taking 2 x Curcumin caps a night, and gone back to my Lipitor due to a higher cholesterol level in the latest blood test and have some Fish Oil Caps that I will take til I finish them then look at Krill Oil.  My Vit D level was pretty good, which I was happy with.  I am hoping that as I already 'have' the joint pain - that it won't make it too much worse ..... as I am already 'used to it' .... only time will tell!  I will keep up my kayak fishing for as long as I can - it is a pedal yak, so I get lots of leg exercise & I am very energetic in my 'casting' - so shoulders & upper body gets lots of exercise as well.  I hooked plenty of bream last week!  :)    

    Hopefully I will get out again tomorrow if the wind doesn't come up!!  ;) 


  • Romla
    Romla Member Posts: 2,092
    @arpie wise to get a baseline for bone density at the start if you haven’t already.  I did feel like 90some mornings early on but seem to have adapted to it and no longer an issue - with your level of activity hopefully will be the same. Bream ? Any chance of fish and chips ? Yum! Nothing better than freshly caught fish! 
  • arpie
    arpie Member Posts: 7,521
    @Romla
    I am getting the DEXA bone scan done tomorrow.  Then I sit back and wait and see what side effects I will get.  Hopefully, like you, I won’t get too many (or much worse than what I already have!).

     I’ll be getting out fishing as much as I can, so long as it is not too rough or the wind to nasty. :) 

    Fishing was a tad quiet yesterday but I landed one really nice one and lots of small ones!  I do it more for sport, so 99% go back.  I mainly target bream, tho get whiting and flatties as bycatch.  I DO keep the odd Flathead :)  These all went badk to grow bigger!


  • Romla
    Romla Member Posts: 2,092
    Hi @arpie pretty impressive catches .No wonder your vitamin D is great with all that sunshine ! Being active helps a great deal with Letrozole and you certainly are. Best wishes always. X
  • arpie
    arpie Member Posts: 7,521

    WOW - 6 months since I last posted on my 'initial post' on BCNA - I've just read thru it from beginning to end and would like to thank all the ladies who helped me so much throughout it all - I couldn't have done it without you!   @kmakm @Romla @Zoffiel @Julesjourney  @Afraser @SoldierCrab  @lrb_03   @Annie C  @Brenda5(and so many others!) ... and lots has happened since.

    I only lasted the 6 weeks on Letrozole and then swapped to Exemestane, which seems to work better for me.  I have a few hot flushes now & then, but not extreme.  My brain doesn't work as well as it used to - but sort of getting used to it.  The joint pain is virtually non-existent which is terrific (apart from my normal arthritis pain.)

    I am still playing uke & kayak fishing - we have lots of Xmas Uke Gigs on - with our final gathering is Dec 18th.  I've really found that keeping busy has helped me thru it (as well as my uke buddies & family who've supported me too.)

    My husband's dementia has now been definitely confirmed & now on a restricted drivers licence - so good that he can still drive locally!  His general behaviour makes me laugh & almost cry day to day - he wanted to have a go at the Dr who said he had dementia - but then forgot about it, so that was good!

    Sadly, my ultrasound 2 weeks ago has shown some "hypoechoic fat necrosis tissue'' at my surgery site that wasn't there 4 months ago - and 5 days ago, was contacted by my Rad Onc who told that this will need to be investigated with a biopsy.  I am still awaiting confirmation of an appointment either late next week or early the week after (leading up to Xmas Day!)  It has been quite stressful for me - as no appointments are available in either my home town or Taree - so will be going to Port Macquarie for it (TBH, my preferred area for it!) Sadly, My wonderful specialist Breast US radiographer won't be available either, so very disappointed with that.   However, at this point in time, I will just happy to have it done before Xmas!  

    All this has brought back all my fears & tears from 12 months ago - so whilst  "hypoechoic fat necrosis tissue'' is generally benign - it can't be discounted, as some do turn out to be cancerous.   There is also a 'dent' on the surgery site that I'd noticed a month or so ago whilst in the shower & bending down to pick up the soap (it doesn't show when standing upright) ..... but thought it was just 'settling down'!  Should have had it checked back then! DUH!

    SO .... fingers crossed I get the all clear (once I have an appointment to go to!  grrr) ....

    It is a shame that another Xmas & New Year will be impacted by my BC (I reckon I'll be lucky to get the results by Xmas unless my appointment IS next week.)  

    I have an appointment lined up with my BS in late Jan (the 12 month checkup) so hope that it WILL be just a checkup - not looking at further surgery/treatment!!  

    TAKE ONE DAY AT A TIME, WOMAN!  DON'T OVER THINK IT ..... this is what I tell other newbies & need to do it myself again right now!  KEEP BUSY!!   Yes, and the waiting SUCKS!

    I am currently thinking of everyone else who is newly diagnosed & going thru the 'waiting period' - and those who's anniversary is now & going thru all the checks & tests again and those who've had 'call backs'.  Take care & all the best xx

    I am off to have a bit of a fish!!  ;) 
  • Sister
    Sister Member Posts: 4,960
    Hope you catch a tasty one, @arpie.
  • jennyss
    jennyss Member Posts: 1,951
    Dear @arpie, I will be going to Moruya after Christmas. No access to boats, but there can be good fishing from the river banks and beach. We will be able to fish on the rising tide every afternoon.

    from jennyss in Western NSW
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    @arpie
    what a frustration for you at this stage I hope that appointments flow quickly and easily for you and that results are in before Christmas so that you can plan ahead whichever way your results come back. 
    Keep up the Uke playing and remember Breathe....

    Soldiercrab

  • Wonk
    Wonk Member Posts: 61
    Hi @arpie I’m sorry to hear you’ve had some concerns come up at this stage. I just wanted to say thank you for all the advice you’ve given me over the last month. Now it’s my turn to let you know that I’m thinking of you and hope everything turns out ok xxx
  • arpie
    arpie Member Posts: 7,521
    Many Thanks ladies.   

    @Wonk - Thank you - I am trying to take my own advice, but it really is difficult.  I am still awaiting an appointment for the biopsy  :(  
  • Blossom1961
    Blossom1961 Member Posts: 2,362
    @arpie Sometimes our own advice is the hardest to take. Throw yourself into Christmas, your Uke and fishing and time will pass a bit quicker. I would send you a snuggle hug but it is probably a bit too warm where you are for that so I will send a great big normal hug instead. xxx