Hello!
This is a new thread to talk about Kadcyla treatment. It is for those of us about to start treatment so we can be a support to one another.
However, those who have been through it are massively welcome too. Your experience will be useful to hear about as we move on to the next phase of our treatment.
It is worth doing a search of Kadcyla on here as previous threads have provided useful information.
Looking forward to talking to folk. x
Thanks @Jaygo!
I’m starting Kadcyla on 27th March. I had a grade 3, stage 2a HER2 positive IDC plus 2 positive nodes. I had a single mastectomy and axillary node clearance at the beginning of Feb.
Hi @dilly
I haven’t got a start date yet. I am having my mastectomy this Thursday. My results appointment is on the 10 April, so I assume they will let me know then. I’m hoping for a bit of grace before starting as I plan to have 4 days by the sea on 20 April.
I’m now focusing on how lucky we are because it’s a relatively new treatment, that women before us fought hard to get NICE to agree to its widespread use. Initially they refused because of cost. So a sobering moment when I read this…we really are lifted up on the shoulders of women who came before us.
Couldn’t agree more. I was reading that one person was having it through BUPA and it was costing £6000. I wasn’t sure if that was per infusion or for total treatment, so I did another google search and each cycle costs somewhere between £1,500 and £2,500.
The cost is one thing, but as you say Dilly, it is the fact that the treatment is so recently available. The alternative doesn’t bear thinking about.
I shall remember that on the days where I feel frustration. X
I believe Breast Cancer Now was instrumental in campaigning for the wider availability of Kadcyla!
I had it through BUPA and the centre charged almost £7k per cycle. It’s definitely not the cheap and cheerful option, but the numbers speak for themselves in terms of risk reduction for those that haven’t achieved the elusive PCR.
@kartoffel wow! I read somewhere it was about £90K per whole treatment. I can suffer from a sort of ‘medical treatment imposter syndrome’, but when I saw that I decided I must really need it because my trust wouldn’t have agreed otherwise lol!
@kartoffel maybe I got this from you then. Anyway, we’re flipping gold dust aren’t we? AND we’re worth it.
Yeah, its possible - my memory ain’t what it used to be 
Once I got over the initial disappointment of 10 more months of treatment, it helped for me to reframe it that way and look at it as an expensive opportunity that we wouldn’t have had access to even a few years ago. I just like keeping a running tab of all my treatment that I haven’t had to pay for or fight to get access to.
That’s a really great reframe. I was expecting to be having further treatment given poor response to chemo but have been surprised just how hard the idea of another 10 months has hit me!
That’s the thing, isn’t it…even if Kadcyla chemo is ‘easier’ than other chemos, it’s still 10 months of going every 3 weeks with all the expense, disruption and stress that will cause!
I guess at least after the first one it will be a 30 minute jobbie in the chair, so it doesn’t eat into the day quite so much. I guess that’s easy for me to say as I am only 20 minutes drive from the hospital. It takes longer to park than to get there and I’m not joking.
Luckily I managed to get enhanced PIP so I have got a blue badge in the post. Here’s to that making life easier for the next 10 months.
And don’t discount PIP even if you’re working…it isn’t means tested and you should be entitled to the lower rate with cancer treatment. Shout out if you want to know more. x
Mine’s 45 mins, plus you have to allow half an hour for for parking 
Oh not tooooo bad, but even so it’s a pain with the parking isn’t it?
I’m on the Isle of Man so PIP isn’t an option 
though does mean it’s only 25 min to hospital which has a dedicated oncology car park which makes life easier. Not relying on 30 minutes - paclitaxel was supposed to be an hour but with set up, questions, flushes etc it took half a day
Thinking about doing a phased return to work after radiotherapy so initially going to plan work around treatment days to take the pressure off as much as possible
I have had ten rounds of Kadcyla so far - I felt the same as you ladies at first - 10 months of treatment oh god! And then how lucky I am as it’s so new, no sickness I have got more fatigued with each cycle but it’s not for the whole 21 days. Worst side effect is bone pain but I think that could be more down to the letrazole. Hope that helps xx
Yes @suzy72 it does help a lot. I could do without the bone pain, but whatever it takes to get this sh!t show filed in the drawer marked ‘ancient history’ is good with me. xxx
Thanks @suzy72 it’s great to hear from people ahead of us x
Thanks @suzy72! That helps a lot! I suspect that, as always, the waiting is the hardest bit. Once we’ve got a couple of rounds under our belt we’ll know what we’re dealing with and will probably look back and chuckle as nothing is ever as bad as your mind thinks it will be! Xx