Hello everyone on Kadcyla I have my third one on Jan 3 but I need some help please I have had the fatigue the very dry mouth treatment nothing as severe as previous six months on taxatare but I am really suffering with conjunctivitis had it the third week after the first threstment and I have it again now so so painful cannot open right eye had blood tests done today all normal neutrafils and crp
Have been on antibiotic drops virtually since last treatment on 12th December
I am very emotional with it and am sure it is due to the infection
Please can someone help
Much love to all of you on Kadcyla and you are in my thoughts and prayers Kate x
Hi there…pop into a pharmacy and see the pharmacist…I get very dry eyes on Eribulin, and often wash out my eyes with optrex eye wash, it seems to help.
as you are on Kadycla I would just check with the pharm…inBoots I find they are excellent( not the girls behind the counter)
love and hugs, Moijan???
Thank you so much for that appreciate your advice where are you on your journey if that is not to ride a question
Much love
Kate x
Sorry to spoil your day …just read on Facebook that this drug is being withdrawn by NICE within the next month. There is a petition going but once again another option being taken away from us.
Assume ladies already on it will be able to continue but not going to be available as next line treatment for others .
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Oh dear Carolyn…how sad for all these ladies! Perhaps we should start a petition! Or maybe a march to Downing st?
when the weather improvesxx
Hugs Moijan???
Hi everyone! Hope you had as good a Christmas as is possible. That is just typical isn’t NICE making that public between Christmas and the New Year. My consultant is so positive about Kadcyla. I am on it and have been for 4 cycles now. Thank you for alerting us to this Carolyn. I will look out for a petition.
Hi to you Nicky if you are reading. Just wondering if you have made any choices about the treatment for your liver and if you have started it yet!?
Wishing everyone all the best!!!
Sue xxx
There is a petition which I signed through the Facebook girls but I’m not sure how to copy the link here for all you ladies to sign as well.
Maybe if anyone reading this can help …we can get more signatures .
Carolyn xxx
My daughter living in Indonesia alerted me to the news on Kadcyla yesterday - what distressing news for the new year. I am due my 5th Kadcyla next week & very thankful that I am on it. I so wish I had lots of money to help fund it for other HER2+ ladies who are not already on it. Seems so stupid that the drug companies and NHS cannot reach an agreement. We’re all scared of running out of options for treatment and this is now not an option - no wonder that the UK has worse survival rates than most of Europe. I have signed the petition, please do so too.
Helen x
Hello ladies
I’m sure Jeanette posted on bone Mets recently her friend has been on this for 6 years with a good quality of life and also lovely Dawn has been on it for a long time too.
It’s so cruel that its all about money …how can they put a price on people’s health? When I was in chemo unit for my bone juice recently …nurse said there was a man with skin cancer and his chemo cost 20k a month but it has been authorised for a year by NICE so what after …do they withdraw it?
Xxx
Hi Mojan
I am on Hyco SAN extra six times a day for eyes which has been a lot better for my eyes and also lubicare at night which I smother over eyes
Hyco expensive which I bought 23rd December
Now been offered on prescription and lubicare
Hyco supposed to replicate tear drops
Hope that helps
Much love
Kate x
Just saw this Kate…thank you. May well persue . Am also aware that my wig hair gets n my eyes, so that doesnt help!
Moijanxx
Hello ladies
Victoria Derbyshire featured this drug this morning on her show on BBC 2 …maybe you can find it on catch up …it’s good to get high profile media coverage …
All i can say is? Why are the drug companies allowed to be so greedy …I think it cost 90k a year per patient. Surely they could half that cost to save lives.
???
Have got homeopathic remedy for eyes now and they are so much better see cornea consultant 3rd April my wig gets into them as well
Also still taking eye drops
Hugs
That’s brilliant news that comment has lifted me so much
Had fourth Kadcyla two days ago and the mild neuropathy that I had has now kicked in really badly making me quite tearful hate whinging but fingers and toes so painful
Hi there, I hope Jeany has found us on this thread.
Ive been on Kadcyla for a year - had my 19th treatment yesterday. It makes me feel very nauseous for a few days and the anti-emetics don’t seem to make any difference? But it does seem to be working and keeping my peritoneal mets stable.
Helenspain mentioned on the other thread the tiny red spots she’s getting on her chest and arms. I’ve got them too, like burst capillaries, but on my face and chest. I get such a dry mouth too. I was given a mouth spray but the effect only lasts a few seconds so I just sip water instead. The other problem is I already get eczema on my hands and this gets really painful with the treatment. I think where there’s already damaged skin the drug leaches out into the surrounding tissue.
I will stop moaning in a minute! I just want to get it all down… I’ve also got neuropathy (toes) and get really tired.
On the other hand it’s working, I’m really grateful to be on it, and it’s working for me. I’m still working and able to exercise. The plus side definitely outweighs the negatives!
Do other people get cramp in weird places (like in a tiny muscle in my jaw or in my neck when I yawn…?)
all the best to all of you
Jacksy
Nicky that’s good that surgery/RFA are still a possibility for you if you respond well to the Kadcyla. Let us know what response you’re getting when you have a scan. You must be due one quite soon?
Katie I’m sorry to hear your fingers and toes are so painful. Is there anything they can do?
Jx
Bumping up for scrabble2007
Hi chachi. I’ve been on kadcyla a while now and I’m on my 9th things going well.
However! I suffer with a dry tickely cough that’s a pain! It interferes with talking/laughing/singing. I’ve been put on anti acids and an inhaler to rule out asthma and acid reflux-but I’m now wondering if it’s the kadcyla?! My OC says nothing on my cans would say it’s the cancer or any scarring etc. I wondered if your friend had any joy re this? Xxx