Are you HER2+?
I am. Sounds like we are similar? I have just finished sixteen weeks of Paxlitaxel and am waiting for a port so I can start Trastuzumab and Pertuzumab alone (I had these alongside the Paxlitaxel as well as Denosumab).
How long did you manage on H&P? From my research it seems like eighteen months is the avarage on these drugs before Kadcyla is used. Have you had the spread to liver for long?
Angel Eyes x
To be honest kadcyla wasn’t effective for me as my receptors were so low for HER2 that it didn’t work and later on I was marked as being HER2 negative. I probably, in that case, felt some side effects that wouldn’t have been felt by anyone who was strongly HER2 positive and for who the chemo worked for. However I did used to chat to another lady on my chemo ward who was on kadcyla and had been for some time. She used to tell me she felt very tired the day after her infusion and made sure she had a sleep or a rest but then felt fine for the rest of the cycle. She carried on with her part time teaching job throughout. Good luck with kadcyla and maybe someone else can give you more idea of side effects etc.
Hi Nicky, can I ask what side effects you got from Kadcyla. I am starting it in 2 weeks. Diagnosed with lung nodules yesterday. Thank you so much. Xx
I had kadcyla a few years ago when it was only available to secondary BC patients (who were HER2+). At the time a liver lesion was biopsied and shown to be HER2+ receptive. From that perspective it was available to all SBC patients who had had progression on Herceptin either with or without Pertuzamab so there was no issue with having to insist on having access to this new drug. From what I’ve gathered from this thread it is now available to primary BC patients (who are HER2+) but have no idea of the NICE guidelines or criteria. As I’ve said on an earlier post it may be worth enquiring in the area of the main forum that is for targeted treatments as there may be some other primary BC people who know more. This part of the forum appears in the SBC part and the criteria etc will obviously be different for us SBC people. However you may still get some clarification from someone else who has posted on here.
Hi, my name is Diane. I'm interested to here how you are finding the new drug kadcyla and did your onco recommend this drug for you?
So far having asked my onco about this drug she did'nt think it would be suitable as I didn't have enough residual disease post chemo which actually is untrue and I don't think she is aware of the new recommendations for kadcyla. Now I know more ladies are starting this I will make further enquiries.
Also have you been taking Neratinib which is also a targeted treatment for her+ve BC.
Any info/advice greatly appreciated.
I'm just curious how you managed to get your onco to prescribe this drug because when I enquired about this last month they said that it wasn't suitable for me. I finished herceptin last september after radiotherapy, surgery and chemo and had some decidual tumour (grade one) post chemo/pre surgery. I just don't think they were aware of the new NICE approval for this drug.
Did you come across any resistance to getting kadcyla and if you don't mind me asking which hospital and oncologist did you see .
I think I would benefit from this.
I would be very grateful for any info you have and bestof luck
Im glad you didn’t think I was saying not to post here! But we are the ‘dark side‘ of breast cancer (my words, not anyone else’s opinion just in case I’ve offended anyone!) so the longer you keep away from this part of the forum the better! As many of us do say when saying Hi to someone newly diagnosed with SBC ‘welcome to the place where none of us want to be’. You are however welcome to continue posting or pick our brains on all sorts of medical issues. Many of us with SBC hang around the forum for far longer than someone with primary BC because of the very nature of our diagnosis and therefore have a lot of knowledge we are happy to share. I’m sure most people with primary BC just want to move on and think their diagnosis and treatment was all a bad dream - just like I did - and the best of luck to all of you 😊
that makes total sense! I had already posted in the “targeted treatment” section and silvertong has replied there also so happy to carry on any discussion we have there.
its kind of strange but reading about kadcyla here in secondary treatment does feel more anxiety provoking and as you say it is likely more ladies will start being offered the drug in this way so having a separate thread might be useful.
take care all
Hi ladies. It’s great that you have found that you are both starting this new treatment for primary BC (it’s only previously been used for us secondary ladies). You are more than welcome to continue posting here, which actually appears in the Secondary BC section of the forum (annoyingly, as I’ve pointed out to the administrators before the section title of ‘Treatments and medical issues’ doesn’t show in any way it’s for SBC and quite a few primary ladies have posted here by accident before) but I wonder if you should also set up a kadcyla thread in the general Treatments/chemotherapy part of the main forum as well? It sounds like it will become a more common treatment following on from initial care for primary BC and it would be good to share your experiences with other primary ladies as well? As I’ve said please keep posting here if you are happy to do so, I’m sure none of us secondary BC people will mind at all.
Wow, did you have radio and kadcyla on the same day?! That sounds hard core! I was thinking they’d just bump my kadcyla back a couple of days to accommodate the radiotherapy but maybe not!
I’m pretty pasty white so I try and keep out of the sun anyway but will put some factor 50 on the shopping list 🤣
My paperwork says 14 but I did have 2 x Herceptin injection prior and this use of Kadcyla is so new it hadn't even been mentioned/I'd never heard of it until after surgery.
My second cycle coincided with a radiotherapy session so I did that first and then straight on to Kadcyla. Didn't seem to be any problem from their side and I felt okay. Definitely keep bundled up against the sun if that happens though!
Shielding-wise I had the official Government letter and advice from the team. For my own part I am keeping a low profile and not going in shops etc. I am lucky in that I mainly work from home anyway though. Might depend on your work/travel arrangements as to what they advise you.
thabks for your reply. It’s good to hear someone else in a similar situation as this seems to be such a new use of the drug!!
i should be having my first cycle next Thursday and then radiotherapy some time in the next few weeks so will be interesting to see how the side effects pan out over time.
how many cycles are you due to have? I’ve been told 14.....roll on April 2021!!!!
have you been given any advice re:shielding? I know I have to u TIL 16th August (as per welsh gov guidance) but hoping I can get back to work then (or at least after my radiotherapy!)....so bored of my house now lol!!!!
hope you’re doing well after surgery and radiotherapy x
I am on Kadcyla for the same reasons as you. My third cycle is due on Wednesday. It is a bit hard to gauge what SEs might be due to that specifically or are cumulative/leftovers from surgery and radio.
The first one takes longer because they infuse it over a longer time and then observe you for reactions.
I would just say keep hydrating and avoid skin exposure to the lovely sunny weather we are having!
Let us know how you go 🙂
I didn’t realise they had started using it as follow on for primary bC. Hopefully it gives you very few side effects and produces good results. As I said the thread has been moved up the boards for you to look at and is the one with most contributions so you may find useful info in it. I knew of a lady, who I mention in the thread, who had it for quite a few years and experienced minimal SEs.
I am in the process of starting Kadcyla as post chemo/surgical treatment for primary breast cancer which is a new use of the drug but interested in experiences of others just to prepare myself!!
hope you are doing well
I have ‘bumped up’ a thread about Kadcyla for you to have a look at. It seems at the moment there are not many ladies on it but one of them who is currently on it may see your post and reply.
As with the last post on that thread from Helen44 I was on kadcyla a few years back but my BC reverted back to HER2 negative so it didn’t work for me and also the side effects I may have had at the time were probably due to that.
Wishing you all the best
i am due to start kadcyla next week and also wondering how others have tolerated it and what, if any, side effects have been experienced typically??
hope you’re all well x
I’ve just come across your post after searching for any info on Kadcyla. I have secondaries in bones lungs and liver. All was under control with Herceptin, Pertuzamab and Denosumab but last scan has showed progression in liver so now being switched to Kadcyla.
Are you still on it? How are you getting on? I’m told by onc it is quite well tolerated but I’m worried about going back to the dark days of chemo sick 🤢
Hi just finished docetaxel and had progression in liver and peritoneum as well as further spread in bones so they have said this is the next treatment for me. Did you lose your hair? Mine has gone on previous three months treatment just wondered if it will hrow back or i will remain bald
I have recently started Kadcyla. So far so good and I haven’t had a lot of SE. (Yet) Would be great to hear from other ladies who are also on this drug or have been on it.