Newly diagnosed with mets

Marieda said:

Hi @Glynnis that all sounds good news for you.  Good to hear.   I was taken off Kisqali because it was having an affect on my heart, according to the ECG so have been put on palbociclip, which I am hoping is as good as Kisqali.  I was told I could also go for 6 months before the next stent change, but left stent not doing the job as well as the right, so may have to change earlier.  Bone mets don't seem to have changed so far.     As if we don't have enough problems - wouldn't it be great to be able to do away with the stents!   Best wishes for continuing improvements..

Hi Marieda.  I've been reading through these comments, and was wondering how you went on Palbo?  I've been on Kisqali but apparently my liver doesn't really like it, so I'm either going to try a lower dose, or try Palbo.  Did you find it okay?  It's got a very good reputation for success.  Hope you're doing really well.  

@Marieda, that sounds good, your last change went ok then, mine not due till August/September, it was done in February but have been keeping a close eye on things to make all good, the specialist wants to leave me 6/7 months with all this COVID stuff going on. My tumor markers went up last blood test, so having another on Friday get those results next week so will go from there. Glad all is going well with you 😃😃😃😃😃

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. 

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.

You too @Glynnis stay strong and keep your chin up :)

@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 😀

@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! :)

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

@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. 😀

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