Kadcyla

[BoogaBetty]

I also get frequent muscle cramps in weird places due to Kadcyla -- under my rib cage in the front and back, in my neck running up to my jaw, in my feet, and in my lower left side -- yowza, they all hurt when they happen! I also have a little muscle weakness in my left knee. I feel like I get the whole pu pu platter of side effects at some point after infusions -- insomnia, dry mouth, neuropathy (now better controlled by the doctor doubling me up on Gabapentin), etc., but it's all still better than my earlier chemotherapy which caused continuous diarrhea.  

[nicky08]

Bumping up

[helen44]

Bumping up for Mackers.

I was on Kadcyla for 4 months back in Oct 2016, it wasn't too bad as far as I can remember. The reason I came off it was because I reverted to HER2- so it didn't reduce my liver mets.

I am still here after 7 years with SBC & currently on capecitabine(my 5th different chemo).

All the best with your treatment. 

Helen x

[Jacksy]

Hi Kelly,

I’m sorry I didn’t reply to your message, I’ve only just seen it. I think my email notifications must have stopped getting through. I’m still doing OK on Kadcyla, although my most recent scan shows a tiny bit of change, so we have to see what the next scan shows. They’re not changing anything yet. 

I haven’t really been on the forum for ages so I don’t know how you’re getting on. I really hope things are going well for you on Kadcyla. I will have a scout around and see what I can find. Im surprised your onc has given such a bleak outlook if the Kadcyla doesn’t work - there seem to be so many different treatments, I hate to think you’ve reached the last suitable one. 

Wishing you all the very best Kelly, take care

Jacksy x

[kelly1974]

Hi Jack's

I'm about to start Kadcyla for peritoneal Mets and wondered how you are doing? I haven't had much success with my treatments, my cancer seems smarter than the meds, only getting 16 months from herceptin and pertuzumab. Quite scared that I'm at the end of the line as my onc has given me a matter of months should the kadcyla not be successful. Beat wishes, Kelly x

[Jacksy]

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

[nicky08]

Hi Rohit

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

[ramade]

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

[rohit88sood]

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

[JadiCakes]

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

[helen44]

Bumping up for scrabble2007

[helen44]

Bumping up for Camilleri

[nicky08]

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

[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

[Jacksy]

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

[Katiej]

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

[Katiej]

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

[nicky08]

Bumping up for jeany

[nicky08]

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

[Moijan]

How are your eyes now Kate?

hugs,

Moijan💚💚💚

[Charys]

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

[Moijan]

👏👏👏👏👏👏👍

[Carolyn52]

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.

[Moijan]

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

[Katiej]

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

[Carolyn52]

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

[helen44]

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

[nicky08]

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

[bonariensis]

copy and paste this rather long address into your browser:

http://action.breastcancernow.org/ea-action/action?ea.client.id=1777&ea.campaign.id=59942&ea.trackin...

[Carolyn52]

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

[pumpkinsue]

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

[Moijan]

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💚💚💚

[Carolyn52]

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 .

[Moijan]

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💚💚💚

[Katiej]

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

[Moijan]

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💚💚💚

[Katiej]

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

[nicky08]

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

[helen44]

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

[Katiej]

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

[Stephie23]

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

[Moijan]

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💚💚💚

[nicky08]

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

[pumpkinsue]

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

[Katiej]

Hi my name is Kate and I never thought six years ago when I was given the all clear from breast cancer agent two years of treatment after surgery
I would be posting here so that is how long my last post was
I was diagnosed with lung metastitsis in April this year I have had give taxatare which I didn't tolerate at all well even though it was half the dose I had nine years ago hence not having the sixth one my oncologist deemed it too dangerous for me
Along with taxatare I have had pentuzamab and herceptin the November 7th was told after full body scan that the last six months hadn't worked my tumour in my left lung had doubled and now it is in my sternum
Have been put on high doses of vit d for four weeks and start denosumab 5th December
For lung I start kadcyla next Monday
I am very encouraged by all your posts and it is so good to hear what really happens
We have no secondary breast cancer nurse st Kgh or a psychologist as her funding was cut Sharon was from Macmillan and asked me to write to Chief Exec
And say I had been discharged against my will
Feel I need to offload but certainly don't want to put family through any more stress has anyone any ideas
Everyone thinks I look good and act as if nothing is wrong as after chemo finished I felt back to "normal"
And have no physical symptoms but inside I am scared
Sorry to offload to all of you and wish you all the very best with your journeys xx

[pumpkinsue]

Hi Nicky! Just wondered if you saw a tiny post in the independent today to say that Nice have provisionally said yes to pertusumab for advanced cancer. Just wonder what this may mean for you? Sue xx

[pumpkinsue]

Dear Nicky, thanks for getting back so quickly. You may be luckier if your onc has managed to get you H/P again. I know I spoke to someone at the Marsden who said that there was a case of someone having RFA on their liver and after some wrangling was able to carry on, on kadycla. I just wonder if some hospitals handle things differently. Hope things work out for you. I will watch out for your posts. Sue xxx

[nicky08]

Hi Sue (I remember your log in name well!)

That is very interesting and I'm just wondering if something similar may happen to me as we (well, my onc) has obviously flagged up my change of treatment to the CDF as he has requested I move on to Kadcyla. He had actually prescribed it as well, just ahead of my appointment with him last Thursday but changed the prescription once we had discussed the next steps ie biopsy and/or surgery. I had H and P last Friday, as I have been having, but not sure what will happen next. I have not had my appointment for The Marsden yet although it has been requested by my onc. I have had a second opinion there on two previous occasions to check/confirm that the treatment I am on is the right way forward so I am familiar with seeing Prof J there but get my treatment locally. I shall bear in mind what you have said and see whether your scenario is mentioned when I have my appointment or whether I'm told by my onc that I can't  continue with H and P now I've had some progression (I know the only case for staying on it is if it has progressed to the brain from what I've previously been told). According to the last scan all bone mets are stable and healing and as far as I can tell from the very brief report on the last CT all other liver mets have gone, it's just one that has increased in size rather than a new met. If I have surgery to remove it it would be a similar situation to yours where you had breast surgery to remove the lumps.

I will update on here once I know what's going on but wish you all the best with Kadcyla and you don't get the side effects that are reported on here. A lady I know who has had it for about 2 years now doesn't seem to get anything other than tiredness for about 24 hours after the infusion, something I had hoped for once I'm on it, but now not so sure from what others have written here. As with you I would also be frustrated that a treatment option is used when an existing one, plus maybe surgery, would be as effective.

Take care

Nicky xx 

[pumpkinsue]

Hi reading back I should say the 2 areas in my breast were cancer. 2 different types. Also the CDF were going to write to the Marsden that's what my hospital has said. Sue xx