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
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
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
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
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
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
Hi Helen,
good luck for this one?
Moijanxx
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
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
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)))
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
Hi Nicky. My name is Sue and I have found it very interesting reading what is happening to you with regards to herceptin/pertusumab and kadycla. Sorry to hear that you have a new liver met. Hopefully your team will deal with it for you.
I would just like to tell you a little about my experiences with these 2 drugs. I had been taking herceptin/perjeta since May 2013 for her2 Er positive bone mets. Dropping taxotere n Oct 2013. I also had denosumab and tamoxifen. I had been doing well on these until April this year when a mammogram picked up some areas of suspicion in the left breast. I never had surgery, which I now regret. There were 2 small areas. I still don’t think it is completely clear if they were new areas or regrowth in old areas. This mammogram led to biopsies and a CT scan and a bone scan. These came back as still being ‘clear’ or stable. It was then decided that I could have a mastectomy with the support of my hospital. I had this at the beginning of September. The results were as good as could be. The areas hadn’t grown since April, my lymph nodes were clear there were clear margins. The receptors hadn’t changed either. I have recovered from the surgery quickly. The issue has been what treatment I should have! . I did decide to ask for a second opinion again at the Royal Marsden where I had gone in May 2013. I am treated at another hospital but was recommended the pertusumab in 2013. The view at the Marsden was that as my breast had been dealt with and the rest of me seemed fine I should carry on the H/P. It wasn’t time to move on yet. I asked whether there would be an issue with funding. The Marsden thought not. I was happy at this. I then contacted my hospital and relayed the message. Sadly following several meetings with my hospital it seems that there was an issue with funding. Apparently the CDF is very strict about any progression and that is what I was deemed to have had. There was really no choice but to move onto kadycla. I still feel confused about this. I know that my hospital are concerned that these new areas indicate that the H/P isn’t working as well so I should move on! I have spoken to the Marsden and apparently as it all comes from the CDF I couldn’t carry on getting the H/P at the Marsden. I do know that as soon as my mastectomy was over and I went for the results I was handed the recommendations from the MDT to say the H/P was being put on hold. It will be interesting to hear what happens to you with regard to the funding. Do you get the pertusumab through the CDF?. I will probably never know whether my hospital reported too soon to the CDF about what had happened to me. I felt very stressed and down about this for weeks. I have now had one kadycla and have changed on my request, to zoladex and letrozole. I was always surprised that no one ever mentioned that I had failed tamoxifen. When I got my irratic periods my left breast would hurt which apparently wasn’t relevant. I have gradually come to accept the change of treatments and I don’t feel that bad on them. It is just a shame I have used up a treatment when I could have had a bit longer on the H/P.
I will be interested to hear if you can continue on the H/P. I hope the biopsy isn’t too bad. Wishing you all the best. I would say it is hard knowing what is the best thing to do. I can see both points of view to be honest.
Sue xxx
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
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
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
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
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
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
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
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