You’re all so lovely thank you im just not sure what’s happening now really im thinking they’ve seeb things in scans and tests lately they’ve not been telling me to try and keep me going as I do feel so ill and declining. I don’t knowxifctyry can do that? With hold info? She said three weeks ago there was an option of a chemo for my liver but would be unlikely to work as nothing else is and I would be yet more poorly and they justcwantvqualiry of life for me now. Oh well! Maybe I should get another opinion somewhere… Xxx
Hilsy, I do hope you feel strong enough to get another opinion. From reading around, its clear that oncologists think differently about the different treatments available.
Love and hugs
LD
Dear Hilsy, so sorry to hear what your oncologist has said. I do hope you get a second opinion if you want to or at least speak to your current team about any other options. I know kadcyla/TDM1 has been mentioned but I understand it doesn’t cross the blood brain barrier so maybe this is why its not being offered or maybe your liver function results show it would be too much strain? Sending you and your loved ones love and supportat this scary time. Apologies for any bad typos I’m having to use my phone.
Nicky x
Hi geordie, that’s good to know and other chemos can get past the blood brain barrier if rads have been given so that makes sense. Just hope hilsy is able to get some support and further treatment from her team or another team. Love to all.
Nicky x
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Morning all, mums first oncologist appointmemtbafter diagnosis is Tuesday, she’s hoping she will be on chemo asap after that appointment. Anyone remember how long it took to get their chemo.appointment after oncologist one. She’s feeling like it’s taking forever to get started with chemo although all testing and results have 4 weeks so far
Is your mum having FEC-T Fergal? Or do they changed it based on mets? My mum doesn’t have her CT results scan yet but chemo begins tomorrow. Her oncologist appt was on 17th November so that’s 14 days. However this is because the BCN told me that they have to deliver chemo within 25 days of giving her diagnosis to meet their turn around times. She’ll be receiving it a week earlier than the last day they could give her it to meet that. Hope that helps.
I don’t understand what is FEC -T please
Sorry - it’s the chemo they often give if chemo is given before surgery. The FEC stands for three drugs and the T for another one. They give the FEC cocktail every 3 weeks for 3 sessions and then 3 sessions of the T every 3 weeks - so 18 in total. I believe my mum starts with that regardless of CT results. You may not have been told yet with you not seeing oncologist.
My mum has only been told she will have chemo once every 3 weeks and after the 3rd one another ct scan to see how everything is responding and then if working another 3
Sounds similar to what oncologist told me when I asked what happened if they discover it’s spread on CT.
Thanks gill, fingers crossed for effective chemo then. Scary time.
Hi everyone,
Had one of those nights last night. Couldnt sleep, my mind started going to dark places (the hallucinations from the Amitriptiline dont help) and I felt very upset and alone.
ust finishing my 11th round of Cape and I am exhausted, I have two infected big toes, (side effects of Cape) plus too many long dog walks and long hot baths-but these are the things that make me feel better!!
I have pain in my lower abdomen today and my back, and last night started thinking I could hear a crackle in my lungs. Not seeing my oncologist for another two and a half weeks. MRI spine scan next Friday. Sometimes I find I cope really well, and then other others I take a dip. Please reassure me you all have nights or days like these!!
Feeling much better now its daytime, and have managed to re-group!!
This is so hard for our partners, who have to tread so carefully between offering support and advice, or just staying silent and being there. I didnt envy mine last night! Bless him.
Archie boy (my dog) is much better now so Pete will be taking him for a nice long walk today- I am resting my feet, maybe do a bit of online Xmas shopping! We out to see Peter Gabriel tonight at Wembley-am really looking forward to it-what a treat!
Is anyone else going to the living with Secondary Breast Cancer conference in Oxford on Thursday? If so, I hope to see you there!
Lots of love and virtual hugs to you all, have a great weekend, onwards and upwards!
Mowser xxx
Anyone her2+
Thanks lemon, I hope it works for years and years and years
Yes hilsy…been worried about you too. Hope youre ok. Any new developments? Please post if you can love. Lots of hugs and cyber love for you xxxxxx (((( ))))
Hi all im still here just not too well sorry. Basically im being left with no treatment now ciz my brain runour returned just weeks after surgery and radiotherapy so im not eligible for anything there firstly because of that AND coz I have nets on my lungs and liver. The two brain barrier crossing chemos aren’t working on my liver Mets which are growing quick so basically I’m riddled and things are just growing out of control and there’s nothing more they can do. I’ve developed cushings as I’ve been on steroids for 6 months and brain tunour is causing me to be off balance clumsy and extremenly tired and I do have now only months or weeks to live but I’m determined to make it through Xmas and longer even if I feel like **bleep** I want to be here for my family and seven year old son especially. I wish you all lots of love and luck and thank you so much for your thoughts xxx
Hilsy, sending love to you and your family at this emotional time.
LD x
Sending you big hugs and lots of strength Hilsy. I hope you have a peaceful Christmas with your family, love Helen xx
Hilsy…i cant think.of any words to make things better for you except i am thinking of you and praying for you and hope that you have a lovely peaceful time with your son at xmas. I just want to cry…none of us want to be here and i really feel for you. I wish i had a magic wand my lovely. Stay strong and cherish this time with your little one. Lots of love to you…bev xxxx