Member
Posts: 1,094
Registered: ‎01-05-2012

Re: Kadcyla

Hi ladies and Rohit in particular,

i haven’t posted on this thread for a while and thought I’d give an update. I’ve been on Kadcyla for three years next month, and it has successfully been controlling my mets (peritoneum and ovaries, and resected  liver). I was HER2+ from the start and I think we can assume the tumours still are. It’s very surprising to hear about ladies whose tumours have changed to such an extent that the treatment approach has had to change too - how very frustrating.

i still get all the side effects I mentioned below, and I too get a strange cramping feeling in my lower ribs, like Nicky mentioned. But the side effects haven’t been severe like your mum’s, Rohit, and I don’t think her response is common. Although the first couple of doses were the worst, I seem to remember.

As far as nausea goes, this has always been a problem, and I’ve tried every kind of anti-emetic. At the moment I have gone back to Ondansatron, but I take it about 20 mins before the Kadcyla and keep taking it for 48 hours solid. Before, I was taking it only once I started to feel sick. This seems to have made a big difference and it feels more under control, so watch this space. I have heard people say before that it’s important to get ‘ahead’ of nausea but somehow never made the connection....

i finally decided to take ill health retirement from my job, and oh boy, it’s wonderful! I’m definitely still in the honeymoon period as I only stopped just before Christmas, but I’m loving it so far, and it’s made treatment so much less stressful as I’m not worrying about taking time off work, and stressed with the travelling and time commitment around the clinic and chemo days.

My onc has just advised and we have decided to reduce my dose slightly as the neuropathy in my fingers is getting worse. I’m a bit anxious about the risks of reducing the dose, but at the same time I can’t afford to lose more fingertip sensitivity as I’m hoping to do a design degree next year that involves jewellery making, silversmithing, pottery and textiles (my big dream). It’s a difficult balance and the first time I’ve had to make a d3cision like this I.e. quality of life over potential risk of faster progression. I hope I’ve made the right call.

love to you all

Jacks xxx

 

Community Champion
Posts: 4,534
Registered: ‎01-05-2012

Re: Kadcyla

Hi Rohit

I have replied on your other post, Chemotherapy after progression. x

Member
Posts: 234
Registered: ‎30-03-2017

Re: Kadcyla

Hello Rohit( i've shortened your name hope that is ok), this is a shocking story. Has your mother a breast cancer nurse you can discuss the side effects with? i have not taken this medicine, i know it is new, but there is sure to be someone on the site who has, More likely on the primary breast cancer site because i don't think the NHS provides it yet for thos of us further down the line in England. Hopefully soon though.

if no joy google the pharmaceutical company that makes it or telephone them, they should be more than happy to explain all side effects to you. GP should be helping also??

hope this helps

Ramade

Member
Posts: 4
Registered: ‎11-12-2018

Re: Kadcyla

Hi All,

 

My mother was diagoned with 3+ stage breast cancer in Jul'16 and has gone through couple of round of Chemo, Radio and got her breast removed.  During the initial level she was put on Chemo + Herceptin but due to wrong treatment she was not given any hormonal treatment. Hence sadly her cancer got metastatic and it got spread into her lever and bones.

 

So she had another round of Chemo from Mar 18 along with Perjeta. But Perjeta did not work on her and now the cancer has stated moving into her Lungs.

 

Now Doc has suggested to put her on Kadcyla. She had first cycle of Kadcyla on 6 Dec 18 but post having the same she has lot of issues - vomiting, body ache, loss in appetite, constipation etc. When consulted with doc he has stated these are known side effects of Kadcyla.

 

Could anyone suggest if these are actually fatel side effects or in due course body will get use to this drug.

 

Thanks in advance

Member
Posts: 13
Registered: ‎26-05-2016

Re: Kadcyla

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
Member
Posts: 350
Registered: ‎18-01-2013

Re: Kadcyla

Bumping up for scrabble2007
Member
Posts: 350
Registered: ‎18-01-2013

Re: Kadcyla

Bumping up for Camilleri

Community Champion
Posts: 4,534
Registered: ‎01-05-2012

Re: Kadcyla

Hi jacksy

Im not currently on a list for surgery etc as we're still trying to work out if Kadcyla is doing a complete job for me! I've had my first scan and mostly I am responsive to it but an area in my lymph nodes has shown up which we are investigating. I am pestering the Drs at The Marsden for second opinions so they must be getting fed up with me - I am currently treated at my local hospital but would transfer there if Kadcyla isn't working.

On another note I also get the burst capillaries - they look great on your face don't they?! Sometimes they are elsewhere as well and if I accidentally scratch myself I manage to make them bleed which is frustrating.

I also get odd muscle cramps but usually around my ribs, but I had this also on Herceptin and Perjeta. Another thing is that most of my blood results are good, especially wbc and neuts but my platelets take a hammering immediately after the infusion. I think this seems to tie in with the tiredness which I get a couple of days after the infusion which is also when I get some nausea. As I saw on your other post I take domperidone which is much better for me that metaclopromide - the wierd spaced out drug!

Nicky x

 

Member
Posts: 1,094
Registered: ‎01-05-2012

Re: Kadcyla

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

Member
Posts: 1,094
Registered: ‎01-05-2012

Re: Kadcyla

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

 

Member
Posts: 22
Registered: ‎27-04-2016

Re: Kadcyla

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
Member
Posts: 22
Registered: ‎27-04-2016

Re: Kadcyla

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
Community Champion
Posts: 4,534
Registered: ‎01-05-2012

Re: Kadcyla

Bumping up for jeany

Community Champion
Posts: 4,534
Registered: ‎01-05-2012

Re: Kadcyla

A quick update from me. I have had a couple of cycles of Kadcyla and am due my next one this week. Fingers crossed it will work as well as for those ladies who have been on it for years.

Although I can't have surgery/RFA at this point when I had my liver biopsy done last week the radiologist said it is still a possibility as long as my disease gets under control again. I'm not holding my breath, unlike when she was doing the biopsy 😉,but at least it's not been ruled out. I asked for a biopsy as my HER2 has changed before and although I don't expect it to happen again (in fact going from HER2+ to HER2- is very unlikely according to the Prof at The Marsden) it was worth the discomfort to get an up to date pathology of my SBC. I also went to see the Prof yesterday, for a second opinion, and it was good to hear there are other treatments I could have if Kadcyla fails. It is one of ours fears that we have run out of options but it sounds like there are new drugs being trialled right now for ladies such as ourselves. Admittedly you would have to go to one of the hospitals where they are being run but it is a bit of a lifeline. By having a biopsy done they will be able to access my results and run their own tests on things such as HER2 mutations and some other things, which I really can't remember, to see what regime would be appropriate. He also said that none of these newer drugs were available when I saw him 2 years ago so progress is being made.

Hope everyone is doing Ok.

Nicky x

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Kadcyla

How are your eyes now Kate?

 

hugs,

 

Moijan💚💚💚

Community Champion
Posts: 2,597
Registered: ‎30-03-2016

Re: Kadcyla

Yes Carolyn, entirely agree.....greed of some drug companies....they hold the NHS by the short and curlies and over the lives of people !

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Kadcyla

👏👏👏👏👏👏👍

Community Champion
Posts: 8,536
Registered: ‎26-10-2015

Re: Kadcyla

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.
Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Kadcyla

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

Member
Posts: 22
Registered: ‎27-04-2016

Re: Kadcyla

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