I've been on Kadcyla for about 6 months now. It became available where I am (currently living abroad) just around the time I had surgery, and I decided to go with it, as I had some residual disease. I'd had TCH chemo before surgery, and if it's any reassurance I have found Kadcyla to be a walk in the park compared to TCH. I get slight nausea for the few days after the infusion (not even enough to take any nausea meds), bit of fatigue, but not really too much else. I've been able to go back to work full-time, and all my heart scans have been good. I've probably got a bit more tired as I near the last few rounds, and had one minor infection, but that could also just be the cumulative effects of a year of different treatments ! So, overall it's been pretty smooth riding, and I know everyone responds differently, but hope you have a positive experience too
Jem - just jumping in here re: your comment "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."
No guarantees of course as everyone is affected differently but the sleeplessness might have been due to the steroids and/or filigrastim injections you get with full chemo - you don't seem to get either of them with Kadcyla so hopefully that will be better.
I didn’t have Kadcyla in the end. I am having Herceptin only. I was unsure of the treatment plan based on my situation, so I sought a second opinion and that came down very much against Kadcyla, for my personal situation (and that included considerations relating to another drug that I am on). I would not hesitate to have Kadcyla if it were recommended again. It turns out it was just not appropriate for me at this time.
Hoping your treatment goes ok. This is my second cancer diagnosis and I found this forum invaluable for information and support.
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
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
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!!