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Kadcyla

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Re: Kadcyla

 

 

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Re: Kadcyla

Hi & thank you for all your very informative replies everyone,
I am absolutely exhausted :-( at the moment - no nausea but ache everywhere and really tired. So hope that it won't be like this every cycle! It seems that you lovely ladies who are on it are tolerating it pretty well which is really good.
Nicky, I am so sorry that you're joining me, when we met up last month we both seemed ok, it's scary how things change so quickly with this disease.
Lots of hugs to you all, best of luck with your treatments, Helen x
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Re: Kadcyla

Hi everyone and especially Helen,

ive been on Kadcyla since February this year after new spread to my peritoneum and possibly ovaries. The peritoneum has been described as the 'apron of fat' that covers your abdominal organs - delightful! I've been on herceptin for 9 years and had various localised treatments to my liver, which is now clear.

ive found it a little bit tougher than I had been led to expect, nothing 'medical', but nausea and fatigue. But I'm also getting 'anticipatory nausea' when I go into the hospital for treatment, so maybe it's all in my head! I've got some stronger anti-emetics and a mild tranquilliser that I take before I set off which are taking the edge off it. I'm still working, so now I take the day off after treatment and lie-in late, get up slowly and treat myself gently. The nausea/fatigue come and go for the rest of the week but I can go out and about, and keeping busy takes my mind off it.

At my first scan there was definite shrinkage. At the second everything was the same so the docs were happy that things are steady, but I felt disappointed cos I want it all to go away!

one new side effect is that my muscles and tendons get very stiff after the most gentle exercise (e.g. A stroll in the woods). When I get up from sitting down I feel like I ran a marathon the day before, and have to limber up in order to walk normally. This has led to some minor damage e.g.tendonitis of my Achilles as well as funny looks when I'm in a restaurant and get up to walk to the loo!

So generally the side effects are minor and bearable. I hope you (Helen and Nicky, I think) found your first treatment not too bad, and that it works wonders for you all

Jx

Community Champion

Re: Kadcyla

Hi Nicky 

Sorry to see you have had progression it does hit you hard as it did me a few weeks ago. But Kadcyla is a good drug I remember when N.I.C.E was debating whether they were going to fund it because of the expense thank goodness the petions worked.

I do hope this treatment works well for you and the other ladies Good Luck

love and (((hugs)))

Community Champion

Re: Kadcyla

Hi Carolyn and thank you for your kind words - as ever. I know of a few ladies on this drug and Dawn being one of them.  If I remeber correctly it was affecting her blood counts a while back although other ladies on it seem to not have too much of a problem with them.

Hi AnnieMac13.  It's good to hear you are tolerating this regime well. Scan time is so full of anxiety (scanxiety!) and  we all know how you must be feeling especially as this will be the first one since your secondary dx.  Feel free to join in any thread, the Bone Mets one is always busy and used by many mets ladies even if they havent got bone mets.  The older Liver Mets threads seem to have gone quiet recently and therefore slipped too far down the pages to see them easily.  However there are quite a few of us ladies with liver mets so you are definitely nit on your own.

Fingers crossed for your results and let us know how you got on - that's if you want to - I find having to tell anyone my results more stressful than getting them (almost!)

Nicky x

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Re: Kadcyla

Hi Helen, I'm sitting reading this whilst I have my 3rd dose of Kadcyla. I developed a liver met in July after originally being diagnosed with breast cancer Jun 2014. I have a CT scan tomorro and see my onc on thurs for results, a scary few days. I have felt OK on it, much easier than trad chemo. Mild nausea and tiredness the first few days. Would love to be like some of the other ladies I have read about who are doing well on the drug. Hope it goes smoothly for u and u r pleased by lack of side wffects
Community Champion

Re: Kadcyla

Nicky ..so sorry your h and p regime isn't working too well but hoping kadcyla works its magic for you for a long time.
I think dawn has been on it for a long time if I remember correctly .
Hugs xxxx
Community Champion

Re: Kadcyla

Hi Julie, and any other Kadcyla ladies.

Im joining my good friend Helen on this new drug as I've had slight progression in my liver as well. This is after  over 2 years on Herceptin and Pertuzamab. I had of course hoped this combination would have kept me stable, or better, for longer but it is what it is. Luckily Kadcyla seems to be well tolerated so it's good to have an update from you Julie and long may it keep working for you. I already chat to another lady on my chemo ward as we both have treatment on the same day and time and she has been on it for about 18 months and is doing very well, just a bit of fatigue the day after the infusion.

Finger crossed for us all.

Nicky x

Member

Re: Kadcyla

Hi Helen

I have been on Kadcyla for over 2 1/2 years now.....more than 45 doses so far!

I have not really had any side effects worth mentioning (tiredness, weak nails, vision a little blurry - all minor)

It has never affected my blood count.

 

It is given via I.V. infusion, so a trip to the hospital every 3 weeks and as the drug is so expensive the chemo ward have to wait until I am physically in the hospital before it can be requested from pharmacy.

I go the day before to my G.P. for bloods which are faxed direct to ward.

The first dose is given over a longer period and you have to stay in the hospital for a couple of hours to ensure no allergic reation. Subsequent doses are given over 30 mins, although due to wait for the drug being dispensed I am usually on the day ward for a couple of hours each time. 

I don't mind the wait, am just so glad to get the drug.

 

I have secondaries in my bones and liver, although my liver has been tumour free after the first 3 months on Kadcyla and my bones are healing - I have Denosumab injection 6 weekly.

For me, this drug has been fantastic and I live a pretty normal life

I am 53 now and have been living with cancer for 7 years.

 

Good luck with your treatment, 

 

Julie x

Community Champion

Re: Kadcyla

Hi Helen,

 

good luck for this one?

 

Moijanxx

Community Champion

Re: Kadcyla

Hiya Helen
I think this drug is a newer very expensive one and in the us they are having good results with it.
If you don't get many replies maybe dip into "inspire" website and put the kadcyla in the search box.
Hugs xxx
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Re: Kadcyla

Hi there,
I am starting Kadcyla tomorrow as last MRI showed a 2.5cm lesion in my liver. Previously had docetaxol 2 years ago for 2 liver mets, also have bone mets.
If there is anyone else having this drug I would be very grateful for any information regarding side effects and how it works.
Thanks so much, Helen x
Community Champion

Re: Kadcyla

Bumping up for Mrs merc

Community Champion

Re: Kadcyla

Bumping this up for nancy

Member

Re: Kadcyla

I was on Kadcyla for 20 months until the cancer starting growing recently.  i had spells of awful coughing, with a tickly cough some of the time which i didn't really notice and my husband pointed out to me.  i found kadcyla a good drug for me, very effective and the only major side effect was fatigue, which may be the cancer as well.  (Bone, lung and liver mets)  i didn't associate the coughing with kadcyla but with the lung mets and found it to be intermittent.  I didn;t take anthing for it, but I'm on a lot of opiates anyway for the bone mets.

Member

Re: Kadcyla

Hi,
I've got lung secondaries and just had second cycle of Kadcyla.
I have shortness of breath and an annoying cough anyway, but find both are far worse after treatment.
Steroids helped a bit second cycle, but didn't solve the problem.
I wasn't aware of a coughing side effect, that doesn't sound good.
I hope your friend finds a solution, keep us posted please.
S
Member

Re: Kadcyla Coughing Side effect

Hi chachi,

I hope your friend is doing better now?  Sorry, but I can't help re the cough.  

Have just had my third treatment and haven't experienced anything like that.  My secondaries are liver, are hers lung?  Perhaps that makes a difference?

Sorry I can't be of any help, but you are a wonderful friend to care so much!  

Please tell your friend I'm rooting for her too.  xx

Member

Re: Kadcyla Coughing Side effect

Hello everyone

 

I'm hoping one of you will be able to offer some advice.  I am posting on behalf of my friend.  She is now on her 9th treatment of Kadcyla and up to now the side effects have been pretty minimal, especially in comparrison to other treatments over the past 5 years.  

 

The big issue she's currently having is that she has this terrible uncontrolable cough. It's awful and has this week got to the point where she cant sleep because of it. I should say that up to now the Kadcyla has been hugely effective at keeping her cancer stable and long may that remain, it just seems that the effects/side effects of the drug are culmative and now, at treatment 9 the side effects are kicking in.  I've done lots of reading about the drug and it's side effects and it seems that the cough is a rare side effect, it's 1 in 100.  She is also experiencing some shortness of breath when she climbs stairs but as she say's "she can cope with that" it's just the awful coughing that's getting the better of her. 

 

So far, the hospital have been slow to recognise or acknowledge that the cough is a side effect of the drug but this week they have.  Perhaps it's because it's a rare side effect.  She's been prescribed all sorts of things from anthistamine sprays to cough medicine but this week they have given her some codeine phosphate which apparently helps relax the gag reflex.  She's has had a little bit of relief from the codeine but she is still in a coughing hell bless her.  I just wondered if anyone else has had any experience with a cough on Kadcyla and if you found anything that helps?

 

My friend is a legend, she has the spirit of a Lion but this damn cough is breaking her spirit.

 

Thanks in anticipation ladies. I hope Kadcyla is working as well for you (less the cough)

 

Cx

Community Champion

Re: Kadcyla

Hi geordiex and phew 😅 I had hoped this would happen, that some agreement could be made between NICE and the drugs company as it appears to be such a revolutionary treatment and, selfishly, the one I'd go onto as and when the current regime fails.

How are you getting on with it? I was chatting to a lovely lady on the chemo ward last week as I have done so several times as we are there on the same 3 weekly treatment cycle. I didn't realise she was on kadcyla and she said she just feels very tired the next day but otherwise feels good, hasn't lost any hair and bloods are doing well. Hope everyone on it is doing just as well.

Nicky x

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Re: Kadcyla

That IS good news Geordiex  :-)  xx

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Re: Kadcyla

Kadcyla is back on the Cancer drugs fund 

 

Member

Re: Kadcyla

How's everyone doing, ladies?

I'm about half way though my second cycle.  

No really bad side effects, but I feel a little bit off.  Nothing I can put my finger on.............bit of a sore mouth, constant runny nose and the dreaded tired all the time.

I'm trying to stay upbeat, mainly for those who care about me, because I sometimes swear it's worse for them to keep worrying than it is for me.

Hope you are all doing ok xx

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Re: Kadcyla

Im ok thanks. Breathlessness still awful but learning to live with it for a few more cycles at least. Side effects from kadcyla not too bad just like a bad head cold. Im day 9 today and had my bloods done yesterday. Platelets a bit low but fbc all good. Big hugs ladies xx
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Re: Kadcyla

Pretty good here thanks, dare I say it, teeny improvement in breathing, it's still rubbish, but slightly less so! Hurrah!!
On the side effect front, I'm doing well, what about you, how did you cope?
Xx
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Re: Kadcyla

How we all doing ladies?
Member

Re: Kadcyla

Hi Revels,

 

Nice to meet you!  You have more "get up and go" than me, and I applaud you!

 

Hope everything is still going ok, Gaunts.  I have my next treatment on Tuesday and basically just wait and see if it is working any magic.  

 

Strangely, lack of side effects makes me worry that it's not doing anything.............which is very silly, I know!  Got to get a grip on myself!  he he  :-)

 

Good luck to all  Xxx 

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Re: Kadcyla

Don't go mad on the water, I spent first night up and down to the toilet!!
Glad to hear you're ok. Xx
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Re: Kadcyla

How we all feeling today ladies. I had my first kadcyla today. All ok so far so will get tons of water down me and an early night. Big hugs to you all x
Member

Re: Kadcyla

I'm with you on the more gentle Magicdragon, I've done FEC, docetaxel, Cepcitabine, gemcarbo coped fairly well with them all, but some were harder than others, Kadcyla is a breeze compared!
Went to my circuit training class tonight, was a bit more special needs than normal, but was able to do a bit, which I didn't think I would!
Achy legs and back is as bad as its been today, hopefully normal day tomorrow.
Good luck, will be thinking of you tomorrow Gaunts! Xx
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Re: Kadcyla

Thank you. Yes ive already done fec -t and a couple of herceptain ao hopefully after first one i will be ok. Thanks x
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Re: Kadcyla

Hi Gaunts!

 

The first dose is a long one............for me 90 mins and then 90 more observation.  All was fine, I'm glad to say!  Next dose on Tuesday, which I'm told will be only 30 mins.  Good luck tomorrow!  If you've had previous chemo this one is definitely more gentle.  Will be thinking of you. 

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Re: Kadcyla

Hey magicdragon I am new to here too. Starting kadcyla tomorrow so we are all quite new to it. There seems to be plenty of positive experiences so we csn share those together x
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Re: Kadcyla

Hey magicdragon I am new to hear too. Starting kadcyla tomorrow so we are all quite new to it. There seems to be plenty of positive experiences so we csn share those together x
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Re: Kadcyla

Hi All!

 

Newbie here!   I started Kadcyla on the 6th of this month.  Felt really tired for a couple of days, had "flu legs" on day four, but have been pretty ok since.  

 

My BC has mets to liver, but had been controlled after a course of Docetaxel and then Herceptin for around 18 months.  The Herceptin has decided to give up the ghost, so this is our latest attack!  My liver mets had gone from "barely there", to 3.2 cm in the six months between scans.  Pretty scary, so hoping that the Kadcyla will help.

 

I am sorry for just talking about myself!  It's my first post and will reply and be more interactive once I feel my feet here!

 

Have been reading your sometimes inspiring posts for ages, and glad to be no longer a "lurker"!

 

Good luck, ladies, in all that you fight. x  

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Re: Kadcyla

Blimey you have been controlling it for ages then which is brilliant to see. Im 12 months in but like I say i have really only just finished primary active treatment in may so this lung mets sort of come from nowhere!! Im only in a little chemo unit so very friendly xx
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Re: Kadcyla

Kent Oncology centre, Maidstone.
Been toing and froing there roughly every 3 weeks for the last 13 years!! My oncologist is like my mate now!!
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Re: Kadcyla

Whereabouts are you being treated Revels?
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Re: Kadcyla

😘
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Re: Kadcyla

Thats good news. I too am just watching tele trying to find the breath to do something. First cycle tomorrow so will let you know how I get on xx
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Re: Kadcyla

Hooray!! That is fab to hear.
Day 2 and I'm feeling ok, bit achy but nothing worse.
My breathlessness has been much worse, not sure if it's the drug side effects, or the war currently waging in there, or my lack of movement, I was fairly horizontal yesterday, didn't feel ill, just a bit tired and happy to watch rubbish in the tele!!
All in all I'm ok!
Stay in touch ladies. Xx
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Re: Kadcyla

Even more great news. I just want to be able to breathe again and have some kind of normality so hopefully this drug will do the trick xx
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Re: Kadcyla

Hi both, I have had my second cycle of kadcyla and side effects have been very minimal. I feel well and am continuing to work full time and do everything as normal. I know it's early days, but there are ladies at my hospital who have remained well on kadcyla for three years! Even better, the lymph nodes in my neck, which resulted in my switching from herceptin to kadcyla have significantly reduced/resolved already - amazing! Good luck to you both. I hope it has fantastic results for you. Xxxxx
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Re: Kadcyla

Thats good to know. Im pretty breathless too at the moment can just about make it to bathroom and back. Big hugs and keep us up to date xx
Member

Re: Kadcyla

Hi,
Had treatment this afternoon and am feeling fine, quite breathless, but that's normal for me at the moment, am hoping it's because there's warfare in my lungs currently!
Nothing exciting to report, it was all good.
Xx
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Re: Kadcyla

Ok we can go through it together. Glad to see your managing your symptoms. Good luck. Let me know how you get on xxx
Member

Re: Kadcyla

Hi, no useful advice as I'm starting Kadcyla tomorrow!
I was diagnosed with lung mets in 2006 and have had various different treatments over the years and have stayed stable up till now.
I'll let you know how I feel over the next few days.
Good luck. Xx
Member

Kadcyla

Hello there. I have only finished active treatment for primary breast cancer in June and have just been dealt the blow that I have lung mets! I start Kadcyla on Thursday and dont really know much about it. I have already had a mastectomy and a course of fec - t followed by 15 sessions of radiotherapy. Gutted is not the word. Any advice anyone may have is nore than welcome x