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Kadcyla

32 REPLIES 32
nicky08
Community Champion

Re: Kadcyla

Bumping up for Mrs Merc

Lucerne
Member

Re: Kadcyla

Hi Nancy

 

I have been on Kadcyla for a year and it seems to have worked very well for me so far.  Keeping things stable and on the whole minimal side effects - certainly  nothing like side effects from the taxanes and Fec which for me were truly awful. I have managed to maintain a pretty good quality of life.  Have the odd 'off day' once or twice each cycle which may or may not be treatment related. 

Hope that helps and am happy to answere any more sepcific questions you might have.

 

Lucerne.

nicky08
Community Champion

Re: Kadcyla

Hi Nancy

Welcome to the forum - a great source of information and support.

There is another, more up to date thread on here about Kadcyla (this one is quite old). I will 'bump' it up the page so you can read it as there are ladies on there who are currently having this treatment.

Sorry I can't help any more.

Nicky x

nancy
Member

Re: Kadcyla

Hello everyone,

I am Nancy, I live in Belgium.

Here on the internet i cannot find much info about Kadcyla.

So i hope i can find some answers here....

My story: my breastcancer has spread to my bones, I already had FEC and 2 times Taxotere.

After that i have had herceptin. Nothing works, not even the chemo, because the tumor i was treated for is also back. Now my last hope according to my doctor is Kadcyla.

Even with this, she gives me a survival rate of 5% for the next 5 years.

After all this time i am a bit sceptic, why should this work then?

My doubt is big, to give this a try, first i want to know more about the SE and if my life will be comfortable to live, if you know what i mean. 

So what my question really is: are the SE worth it?

Thanks in advance for your help.

pam01
Member

Re: Kadcyla

Great timing on secondary BC day! Scotlands medicines consortium has declined to approve funding for Kadcyla because of concerns re cost effectiveness.....according to BBC news scotland

SDP
Member

Re: Kadcyla

Nicky is right - its Capecitabine and Lapatinib that crosses the blood brain barrier. BUT have read a couple of interesting articles on people who have had cyberknife or surgery which has opened it up to let Herceptin across? Unfortunately I can't have surgery but if I can in the future then hopefully this might be another option for us?

 

nicky08
Community Champion

Re: Kadcyla

Hi rupali
As Pam has said the cancer Drugs Fung in England (only) can be applied to for Kadcyla, otherwise you would need to be on a trial. As far as I am aware it does not cross the blood brain barrier from what I have read but I could be wrong. For HER2+ secondaries lapatinib and Capecitabine do cross this barrier, again I am no expert but have read this and know of a lady who had brain and liver mets and this combo worked for her for some time.
Nicky x

pam01
Member

Re: Kadcyla

Correction!!!! In England the money comes out of the Cancer drugs fund. In Wales its largely unavailable xcept on trials...I am not sure of the situation in scotland or NI.......Please keep remembering those in the UK who end up going without treatments or paying for them themselves despite contributing equally to the funding.

Lucerne
Member

Re: Kadcyla

Hi Rupali

 

I am starting Kadycla this week for secondaries in bones and lungs.  Here in the  uk the money comes out of the cancer drug fund which is money allocated to fund treatments like this.

 

Lucerne

Rupali
Member

Re: Kadcyla

Do you ladies know if kadcyla crosses to the brain. I have mets in brain lung liver and bones. I live in India and I am starting kadcyla next week.
In UK does the nhs pay for kadcyla or how do you get it.
Lucerne
Member

Re: Kadcyla

Will do - thanks for the advice.

 

Lucerne

dealbeach
Member

Re: Kadcyla

Hi

I did, mainly because I thought I was starting a cold, as its taken a few sessions to see the pattern. You have to be careful about paracetamol hiding a temperature, so be careful in case it is an infection and not a side effect.

Lucerne
Member

Re: Kadcyla

Thank you - that's very reassuring to know. Do you take paracetamol or anything for your flu like symptoms?

 

Thanks Lucerne

dealbeach
Member

Re: Kadcyla

Hi

new to this thread, I've had 7 cycles of Kadcyla and have had flu/cold symptoms after last 3 cycles for 2 or 3 days. Also tired for 3 days afterwards but otherwise feeling remarkably good and with shrinkage reported after my scan. It would not be as easy to keep working full time like I did on Herceptin, but for me its a truly remarkable drug and every active and otherwise healthy person who is HER+ and gets progression while on Herceptin should be able to have it - a longer life and a good quality of life while on it has to be worth the money, after all we won't be drawing our pensions etc. so we aren't going to cost the government any more money than most people.

Lucerne
Member

Re: Kadcyla

Thanks Homer

 

Hope you continue to feel better.

 

Thanks xx

Homer
Member

Re: Kadcyla

i had the sickness nearly every morning after the 1st 2 cycles

and theres no chance im pregnant lol

 

however this cycle i havent had the sickness feeling thankfully.

 

good luck with it xx

Newyork
Member

Re: Kadcyla

That's great news Kimi! So happy for you.

I've just started this drug and based on symptoms it appears to be working as it has taken away my nerve pain down my right arm. The tumour was growing along the nerve root out of the spine very painful but after one cycle the pain went! I am struggling with the side effects though. After my first cycle I had flu like symptoms for a week felt sick and really tired. Just had my second cycle and this time round feel sick again for almost a week feel like I have a hangover which I just can't shift!

But it appears to be working 🙂 xxx

nicky08
Community Champion

Re: Kadcyla

Great news Mimi 🙂
This is one treatment that I am keeping my eye for regarding anyone else on it so any great responses to it are really good to hear, especially as my mets are in my bones and liver. Hope you can breathe a HUGE sigh of relief and enjoy life even more.
Take care
Nicky x

Lucerne
Member

Re: Kadcyla

Wow Kimi

 

That is impressive and I am so pleased for you - great news.  May it continue working for you and giving you a good QOL.  Thak you for your reassurance and taking the time to let me know.  xx

Homer
Member

Re: Kadcyla

hi lucerne,

 

i have had 4 cycles of kadcyla, and today i went to see my oncolgist to get the results

of my 1st CT scan since starting kadcyla,

Its good news

I have mets in my spine,shoulder,foot & recently multiple mets in my liver,

the CT shows that kadcyla has cleared up my liver,no sign of cancer now

my bones are stable too.

my oncologist has said he is pleased with the results so far and i can continue on it,

my 5th cycle is due next tuesday.

 

i am so relieved to hear its working, i have felt so stressed waiting for this result.

 

I hardly get any side effects,

i keep my hair, it is thinner but i have also started tamoxifen so it could be that

slightly achy bones 1st few days after my treatment,

and i have noticed i am more tired.

saying that i still go to work & the gym so its very doable

 

kimi x

SueCheshire
Member

Re: Kadcyla

No prob Nicky xx

nicky08
Community Champion

Re: Kadcyla

Hi Sue
I'm glad you are getting the newest drug and hope it works for many years.
Having been an HER- lady who now finds herself to be HER+ I was very interested to read that you had no HER+ treatment for over two years. Would you mind if I PM you a few questions about this as it may be relevant to the way my BC will have to be treated if Herceptin and Perjeta prove too damaging to my heart.
Thanks
Nicky x

Lucerne
Member

Re: Kadcyla

Thanks Sue for your encouragement.  Looks like I will be starting ext week so will keep you posted. x

SueCheshire
Member

Re: Kadcyla

Hi Lucerne
I was so excited to get Kadclya, can't wait for tomorrow, the results are so good from it. I was on Herceptin 3 and half years then Lapatinib for 18 months and chemo for a year, I've not had any Her drugs since jan 2012 so I'm exited to get back on a her+ drug- we are so lucky to get this expensive drug from from the Cancer Drugs Fund. Sue xx

Lucerne
Member

Re: Kadcyla

Thank you - that's great that it seems to be keeping things in check and side effects manageable. x

Historygirl
Member

Re: Kadcyla

Hi Lucerne,

I'm scanned every 12 weeks. The first two scans showed some shrinkage (I have lung mets) and scans since then have shown stability.

I forgot to mention that after my first cycle I had flu-like symptoms that sent me to bed for a day - but nothing like that since and am now on my 20-something cycle.

Lucerne
Member

Re: Kadcyla

That's encouraging - thanks, have you had good results too? x

Historygirl
Member

Re: Kadcyla

Hi, I've been on kadcyla for 14 months. I've found it much easier than previous chemos (EC and Taxotere). I do suffer from fatigue sometimes (but nothing horrendous) and get joint pain. I hope it works well for you. Della x

Lucerne
Member

Re: Kadcyla

Thanks for reply Sue.  yes unfortunately Herceptin does't seem to be holding things as well - at least according to my scan results. Disappointing as it suited me so well.  Were you previously taking Herceptin?

It would be good to hear how you get on.  I have not decided for sure yet but there don't seem to be many other options right now.

SueCheshire
Member

Re: Kadcyla

I'm starting it on Wed, looking forward to it. Have you had progression on Herceptin Lucerne
Sue x

Lucerne
Member

Re: Kadcyla

Thanks foryour reply Truddies.

 

 

trudy2010
Member

Re: Kadcyla

Hi there, I can only comment on kadcyla from a friend's perspective, not been on it myself. My friend started on it in April or May, i think. She has not lost her hair and I think she's been generally quite well on it except for some peripheral neuropathy where she has lost some feeling in her fingers.

She has not had a scan yet since starting it, so I don't know how it's affected the cancer.

 

Truddles x

Lucerne
Member

Kadcyla

Hi

 

Can anyone give me any feedback as to how they have found taking this Kadcyla. . It has been suggested that it would be good for me.Have been taking Herceptin for the past 18mths and tolerated this really well so it is a difficult decision to make.

 

Thanks