Just about to start Kadcyla - scared

I will be starting on Kadcyla in a couple of weeks and I am very apprehensive and downright scared. The list of SEs looks daunting and the thought of damage to liver and heart is very scary.

Is anyone else out there on this drug who can offer reassurance? People around me don’t seem to understand why I am so scared - they just say how great it is that I am getting treatment - yes, that is correct, but they aren’t the ones having to have it!!


Hi Rosie

I hated seeing your post with no replies, when I am the queen of anxiety and do know what you may be experiencing. I’ve no idea about Kadcyla but…

I have this running joke with my GPs that I get a side effect just walking into a pharmacy. And it’s actually true that I reacted badly to each aspect of chemotherapy and, over a year later, am still experiencing side effects. Never mind the side effects of meds I have to mitigate the side effects of the originals! I am a walking, talking mess of side effects. But what I want to say is, I haven’t encountered anything that wasn’t manageable, either by accepting it and dealing with it or by taking some kind of prescribed medicine to ease it. Measured against the realities of breast cancer, the side effects for me are just part of being free.

One of the treatments I have is zoledronate every 6 months. Some of the listed side effects are pretty terrifying but, once I saw a specialist dentist who explained exactly how it might happen, it no longer scared me. Maybe it would help you if you arranged to talk to your oncologist (or maybe your adjuvant oncology nurse) and go through the side effects one by one. It may feel like wasting time but it’s important to your mental wellbeing - and to me that’s half the cancer experience!

You also have to look at statistical probabilities. Hospitals are obliged to alert us to the SEs they know of but the chances of getting them are very low. Most women sail through - they don’t use this site as much so we don’t hear of the good stories. You can spend all your time feeling terrible about something that might never happen or wait and see. In that wait and see time, you could be doing something to help with your anxiety - there are great videos on YouTube (Progressive Hypnosis’s Manifest Healing and Michael Sealey videos got my through the whole thing - I plugged in my headphones many times a day). It really is worth it.

Sorry if this sounds a bit preachy but maybe there’s one thing you can take from my thoughts to help you (so long as its not the fear that you’ll end up like me lol - my oncologist did say I was “one of the unfortunate few…”) Wishing you all the best xx

Hi rosietd. Just seen your post as I am due to start Kadcyla today and I was wondering how you are getting on?

The same as you I have seen the possible symptoms list and it’s quite daunting! but the outcome is meant to be a lot better than herceptin alone, But still putting the fear of god into. I coped really well with chemo but still don’t want to go back to them days when I couldn’t sleep, had really bad fatigue and no energy. Am just getting my energy level back up!! Jem xx