cancel
Showing results for 
Search instead for 
Did you mean: 

Kadcyla

Community Champion

Re: Kadcyla

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
Member

Re: Kadcyla

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
Community Champion

Re: Kadcyla

Thanks for the link.  I have signed the petition to help other ladies who may need this drug.

Sue - thanks for asking.  I hadn't got back and updated things on here as it's all been a bit busy what with treatment and of course Christmas.  I had an MRI to see if my liver was suitable to have resection but unfortunately, rather than one rogue lesion, it showed up some other tiny ones that the CT hadn't picked up (I think under 2mm a CT won't show them).  Therefore it didn't make sense to have an operation with all this going on so I started kadcyla about 10 days before Christmas.  I must admit I struggled for a bit with SE's notably nausea which I was hoping I wouldnt get on about day 5 - up to then I had felt OK, if a little bit 'off' which is how I felt when I started Capecitabine a few years back.  I will make sure I have some anti sickness prescribed to take home next time around although I did actually have a few from ages ago which I took when I needed to and they helped.  Tiredness was not too bad especially as I was dashing around getting the last few food bits in time for Christmas, next time I hope I can rest a bit more if needed.  So we will see how things go and fingers crossed it does it's job, I expect I will have a scan after 4 or so cycles.

Good luck to everyone on this drug, let's hope it stays on the list for all those who need it - or gets put back on if it's removed as Pertuzamab did.

Nicky x

Member

Re: Kadcyla

Community Champion

Re: Kadcyla

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
Member

Re: Kadcyla

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
Community Champion

Re: Kadcyla

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💚💚💚

Community Champion

Re: Kadcyla

 
Community Champion

Re: Kadcyla

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 .
Community Champion

Re: Kadcyla

Ah, no not rude at all.....am on my fourth chemotherapy, which seems to be working well....it does dry my eyes out ( but have dry eyes anyway, due to fuch's dystrophy) I do find the optrex helpful, it refreshes the eyes. i also buy very expensive drops to hydrate them. But its best to check before using stuff, just in case.

 

I have liver and spinal mets.

 

best wishes for your treatment.

love and hugs,

 

Moijan💚💚💚

Member

Re: Kadcyla

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
Community Champion

Re: Kadcyla

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💚💚💚

Member

Re: Kadcyla

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
Community Champion

Re: Kadcyla

Good luck for today Helen. Hope you are not too tired after the treatment, or recover as quickly as possible if you're. take care, catch you soon. Xx

Hi Katie - glad you also are feeling Ok after your first Kadcyla and hope you don't have any side effects creeping up on you!

This is still a treatment I could start - even this week if the MRI results show I need it- so I will keep an eye on how everyone is doing!

Nicky x

Member

Re: Kadcyla

I am due my 3rd Kadcyla tomorrow & so far it hasn't been too awful. Feel pretty tired & have a very dry mouth most of the time but touch wood nothing much else in the way of side effects. Wishing everyone all the best with their treatment.
Love Helen x
Member

Re: Kadcyla

Thank you for your posts I have had first kadcyla two days ago no effects so far other than feeling under the weather but dark days don't help it is very comforting to know that you are not alone and am sure when confidence comes back will feel much more upbeat am taking your advice and treading water at the moment sending love big hugs and very positive thinking to all of you xx
Member

Re: Kadcyla

Hi Katiej and all embarking on Kadcyla.
Wanted to share my positive news in the hope of offering you encouragement.
I started on Kadcyla in October 2015 due to recurring lymph nodes in my neck. The first dose made me very tired for a few days but since then I have been absolutely fine with no significant side effects. I still work full time and do everything I've always done.
I've had three monthly scans and the offending nodes have either disappeared or reduced. So all good news. Just hope that I can continue like this for a long period of time. Wishing you all well and sending love and hugs xxx
Community Champion

Re: Kadcyla

Hi Katiej,

 

i know, it is a real shock when this hits you. Hope it helps to realise there are a lot of us who have been around a long time and quite a lot who have had mets a long time. My initial diagnosis was in 2001( having been missed the year before) i was diagnosed with  mets in around 2013' but think it was likely there beforehand. You will hear from ladies who have had mets for a very long time.

 

It is frightening....but what you have to do is to tread water for a while and then as you get over the shock you will be able to get some of that confidence back.

 

there are lots of new drugs now and lots of trials, sotry not to let the fear take hold.

 

do keep posting and let us know how things go...we are all here for you,

hugs, moijanxx💚💚💚

Community Champion

Re: Kadcyla

Hi Sue

No, I hadn't seen the Independent but thanks for mentioning it. As for me I am now having an MRI scan and have been offered both RFA or resection. Decisions decsions. The MRI may show which is the best treatment  option otherwise it might be up to me - never a good decision to have to make your own treatment choices! I have seen the recent/bumped up thread about resection vs ablation but both seem to have pluses and minuses. I would need to ask lots of questions before deciding and even then need to confirm that the CDF will continue to fund H and P. I managed to receive it last time even though the CDF had agreed to funding for Kadcyla, maybe it will catch up with me even though I have never had the drug itself.

Nicky x

Member

Re: Kadcyla

Hi Katie J! Wishing you all the best! I have lots of good things about kadycla with long runs on it! Let's hope it works well for us all. I have only had 2 so far. Best wishes xx
Hi Nicky I have investigated the independent post but think it could be misleading! There was nothing about this in other papers. It seems that the price reduction will let it be used prior to surgery for locally advanced disease. That is what it seems to say on the Nice website. The snippet in the I says it will be available for an advanced form of breast cancer! I was just thinking we may be able to revisit this one day! Sue xx