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Newly diagnosed with mets

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  • Marieda
    Marieda Member Posts: 18 ✭
    Hi @Glynnis congratulations on getting it over and done with for another 6 months.  How are you?    After a bit of a worry time and some tests I am able to go till November to have the next stent change, a 6 month break also.   Having a CT scan with the dye, on referral of my oncologist, caused a bit of havoc with my kidneys.   So that is something I have to be wary of in future.   So urologist sent me for a nuclear scan as the dye does not affect the kidney.     Too many doctors :/
  • Glynnis
    Glynnis Member Posts: 360 ✭
    Hi @Marieda, I'm well thankyou, traveling along good, see my oncologist again in couple weeks. Beside your kidney how are you going? Sounds like they have everything under control for the kidney, when is your nuclear scan? Is that a pet scan? Let me know how you go with it, haven't asked where in Oz you are? I'm in Melbourne. 😀
  • Marieda
    Marieda Member Posts: 18 ✭
    Hi @Glynnis I am in the Southern Highlands of NSW, sort of halfway between Sydney and Canberra on a property.  The nuclear scan was to check there was not a kidney blockage and that seems okay.   Otherwise I am going okay now.  It seems everytime I have the stents changed I get an infection which knocks me for a few weeks.   Should be plain sailing now till November.  Let's hope Christmas is a good time for us with no health hiccups!
  • Glynnis
    Glynnis Member Posts: 360 ✭
    Hi @Marieda, glad scans were ok, must admit they put me on antibiotics this time, preventative I presume. Anyway glad all is well with you, yes Christmas will be here before we know it. Yes hope for plain sailing for us both 😃😃
  • Marieda
    Marieda Member Posts: 18 ✭
    Hi @Glynnis, they are going to use the antibiotics from day one from now on.  Lesson learned.   :)
  • Glynnis
    Glynnis Member Posts: 360 ✭
    Hi @Marieda that sounds like the best solution, glad all has worked out 😀 enjoy your day 😀
  • Glynnis
    Glynnis Member Posts: 360 ✭
    Hi @Marieda wondering how your going with your stents? Hope your going well and all is ok. Ive just had my stent changed today, ended up in hospital for the night apparently I had copious amounts of puss in the kidney, so on I’ve antibiotics and kidney getting flushed and catheter in place thank goodness, the Mount of saline they pumping into me I’d be on the toilet all night 😂😂😂😂
  • Hankster
    Hankster Member Posts: 86 ✭
    Sorry for your diagnosis but if it helps I am six years into my Mets diagnosis after 10 years cancer free and still going strong 
  • Glynnis
    Glynnis Member Posts: 360 ✭
    @Hankster the terrific your doing so well. .y mets are under control too, just had a Pet scan and they can't be detected thanks to the medications I'm on, the kidney is not related to the mets although picked up at same time. 😀
  • arpie
    arpie Member Posts: 8,211 ✭
    That's a bugger about the kidney, @Glynnis - I hope it comes good soon as.   Good news with the pet scan results tho!

    Take care xx
  • Marieda
    Marieda Member Posts: 18 ✭
    @Glynnis that sounds awful!  Pus in your kidney.  Did they say what caused the pus? The stents getting infected?  I had mine last done in November and due again in May/June.  No problem with the last change as I started antibiotics a few days before and they gave me some via iv while doing the changeover.  Such a relief after the terrible infections and illness from the first few changes.   Oncologist decided yesterday that the Palbo is just not working and my tumour markers are rising markedly.  The Kisqali worked well, but caused problems with the heart, thus the change to Palbociclib. The alternative now is to go onto a trial of a new drug they are trialling.  All to be sorted in the next couple of weeks.  Hope you get over this hiccup quickly and recover fully and keep going strong! :)
  • Glynnis
    Glynnis Member Posts: 360 ✭
    edited February 2020
    @Marieda not sure what caused the pus but think we/hope we are on top of it now, still in hospital being flushed out he talking about changing it in 3 months this time so will see what he say when do post op check. Sorry to hear that the Palbociclib hasnt worked, hope you get on the trail and it works for you, stay strong and positive 😀
  • Marieda
    Marieda Member Posts: 18 ✭
    You too @Glynnis stay strong and keep your chin up :)
  • Glynnis
    Glynnis Member Posts: 360 ✭
    hi @Marieda how’s things? How you going with your stents? Not a good time to have them changed is it, never mind one day maybe they might come up with something that can stay in there a lot longer, aanyway hope all is well and your staying safe.
  • Marieda
    Marieda Member Posts: 18 ✭
    Hi Glynnis, how it it going with you?  YOu had your next stent change okay?    Yes, I wasn't totally confident going into hospital in May for the stent change, but it was okay.  Not a good time for hospital.  I am on the clinical trial for a new drug so have to go up to the cancer clinic in Sydney each month and every 2 months to the hospital up there for scans.   I am pleased to be on the trial though as it is having a good effect on bringing the tumour markers down and no real side effects. 

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