I hope you are all doing ok and had as peaceful and restful a time as possible over Christmas and New Year.
I wanted to share my recent good news as it was very unexpected and may give other people hope even when you think things are just going from bad to worse.
I had my latest CT Scan results on the 21st December and they have come back with no signs of cancer mets at all. This is amazing to me, especially since I actually had progression to my liver and pelvis on the Palbo/Letrozole combination. Even when I was switched to Capecitabine in June, its effects seemed minimal on other scan results and I thought I was very lucky just to be roughly stable.
I don’t think myself or my Oncologist can quite believe it. She told me I will still need to continue with Capecitabine as we know my cancer is sneaky and likes to hide or go to sleep for a bit. Although I am over the moon with being so lucky, I am also struggling to process the good news, like I can’t quite believe it and keep doubting that I’ve been told the correct results!
Anyway, it really does go to show doesn’t it that you will never know what can happen next on this journey…its certainly made me feel like anything is still possible. The timing of it is super weird as well, because it was almost exactly 12 months ago when I was diagnosed with secondaries…what a year its been!
EDIT: Thanks everyone for your very warm and heartfelt comments. Lots of love xxx
Such great, amazing news! I am so pleased for you! Hope you did something to mark/celebrate it! We all need good news in these times so thank you as well for posting!
Can I ask you a question? I am on Let/Palbo and I feel things are progressing a little as I’m sorer- how did they know to switch you meds? I know everyone is different and they keep saying my CT scans are stable but I don’t feel stable and I think my oncologist doesn’t like when I question her about it as she gets a bit defensive so I’m actually dreading the next appointment if it’s her. I have scans coming up in 3 weeks time but I’m sore now. I know I posted this elsewhere on forum and you may have replied to that also. Just asking about the changing medication bit as when I said I was more sore and asked how that works if I’m stable she asked me quite rudely if I wanted to change my medication- I was taken back as I’m not the professional but I should be allowed to ask questions about my body and care if only for a better understanding of how this all works!
I was having such a difficult day today worrying about my mum almost constantly. This has boosted me completely. So over the moon for you!!! Keep us posted on your treatment. Long may your good results continue!
Amazing results, thank you for sharing! I think we all need these nuggets of hope to boost us on and as I’ve got a scan on Tuesday I really needed to read something like this at the moment.
If I may ask, was it determined whether it was definitely progression to your liver? I might have missed something or mixed posts up, but I thought I’d seen you mention a few months ago that there was some doubt. I’m just interested as this is an area I have mets.
Such fantastic news Gillyflower, thank you for sharing. Just what I needed to hear, being positive is all well and good but facts is the cherry on top!!
May no activity/disappearance continue to infinity and beyond x not sure if u are NED or NEAD after 12 months both sound amazing whichever from where I’m standing.
Bee
What fantastic news that is! That must have felt like the best Christmas present ever! It is so great to hear of positive stories like yours, as it shows us that anything is possible. Thank you for sharing xxx
I’m fairly new to this forum, so still finding my way around, but have been reading your posts and finding them so informative and as with the last one so incredibly hopeful.
Huge congratulations on your fantastic news, so very pleased for you, it does indeed give us hope that all is not gloom and doom.
I’ve been wondering if you had been experiencing less pain in the lead up to your scan, or is it normal to just keep feeling the same? Also what pain relief are you on if you don’t mind me asking?
I have bone mets in my ribs, pelvis and I think spine and take 25mg MST Morphine morning and night (continuous 12 hour pain relief) coupled with paracetamol, this works quite well for me most of the time, pain though in knees and lower back, but that’s mostly when I’m tired or first thing in the morning. Also you said we get all sorts of pain due to the treatments.
I’ve just had my scan on Saturday but won’t know the results until the 19th when my onc should be phoning me…crossing fingers! I’m on Ribociclib and Letrozole so different meds to you, but hoping these are working for me.
Thank you again for all your helpful and uplifting support and advice.
That’s excellent news. It gives hope to us all. I’m still on Capecetabine and waiting for my recent ct scan results. Fingers crossed that it’s working.
You certainly can have good news, i’ve just received my first scan results since treatment started in September and I have healing of the bone and shrinkage in the breasts. I am over he moon.
Hey, Just seen this as I posted for the first time yesterday when feeling a bit “blue” & so pleased for you - what an amazing feeling! So hope that it continues for you. You’ve made me feel that there is hope out there.
Hi just read your fabulous update. Can I ask if you found Cape hard in the beginning. I’m on my first cycle 2nd week and struggling with fatigue and tiredness. Aswell as indigestion. I sailed through palbo and letrozole but wasn’t helping my liver lesion. Struggling with feeling rubbish. Was hoping you could share any wisdom. Thankyou