Kadcyla side effects

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Hi ladies 

I’m feeling pretty broken today and just wondered if anyone has been in the same boat. 
Having got through EC, Docetaxel, Phesgo and surgery I was hoping my new regime of Kaycyla would be a walk in the park in comparison.

I had the dose on Tuesday and still feel awful. I’ve barely made it out of bed. Two days of vomiting, awful stomach cramps and total exhaustion which coupled with the insomnia I seem to have at the moment is just horrific. 

I’ve got 13 more cycles to go so won’t finish til July next year. I have a 19 month old and already feel like I’ve missed out on so much due to this awful disease. I was really hoping that Kadcyla would be as close to normality as I could get whilst still having treatment. 

Has anyone else had this and does it get better as your body gets used to it?? Pray tone1Pray tone1Pray tone1

  • Oh, that sounds really rough. Have you spoken to your oncologist or nurse?  There might be something they can do either with your dose or with the anti sickness pills and I am sure they'd want to know how you are tolerating (or not tolerating) the treatment.  Best wishes

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  • I’m with my onco on Thurs so I’m def going to discuss it. He described it as chemo light, slightly heavier than the phesgo but not as bad as the chemo I’ve had. I’ve managed a 30 min slow walk today but not back having a lay down cos I’m wiped out. Part of me is hoping I’m fighting a bug in the background as this isn’t gonna be fun for another 13 rounds! 

  • Ask your team if they can prescribe Akynzea. It's a long lasting ant nausea drug. You take it an hour before chemo, and it can last up to 5 days. It was a game changer for me. Good luck x

  • I have had 4 cycles so far and I need a further 7. I had 4 cycles of EC chemo and 12 cycles of paclitaxol. I was told the kadcyla would be a walk in the park in comparison to what I've had already and I have to say this chemo has been the worst.

    I get achy arms, legs and abdomen. Very bad headaches, vomiting and nausea, shivers and bad fatigue. I have to say there has been no improvement yet with the 4 cycles I've had. I speak with my oncologist before each cycle and they keep prescribing me different antisickness etc to see if we can ease the side effects a bit. I would just keep mentioning it to them in the hope they give you something that works a bit.

    Good luck with it all