Kadcyla -- what is it like?

[Ursula_I]

Hi all

Please, I need your reassurance. After the brain lesions I had WBRT in May, but did not change my treatment (Phesgo) as there was little progression elsewhere. However my latest scan (not of the head) shows new tumours so the oncologist has moved me onto Kadcyla - three-weekly infusions.

The first will be next Tuesday. The following Sunday I am meant to be travelling to Spain with my family (inc elderly parents) for a 12 day trip!! We are going by train. I've been so looking forward to it.

When I had the Docetaxel last year there was no way I could have undertaken an arduous trip.

So, what kind of side effects can I expect? Would I be mad to go? Will I feel ill all the time?

Also I am as bald as a coot now after the WBRT - sniff - is there no hope that the hair will regrow???

Thank you

Lucy x

[OneLump22]

Dry your eyes sweetie & take a deep breath. I don't know enough about the treatment, but I'd be willing to guess that it will. Ask your Onc if it's safe & try massaging your scalp with tea tree & biotin oil daily after your shower. That's what I did when mine fell out & it actually came back in curly (for a few months anyway). Not sure if the oil had anything to do with that.

[Andersl]

Hi Ursula

I'm on 3 weekly cycles of kadcyla. I've had nearly 30 cycles

I had a few brain mets appear last year but carried on with kadcyla and Gamma ray treatment for the mets as it is controlling the disease in my body. I'd had a few months off before and after a cataract op and it's my belief that's how the brain mets developed.

As for side effects, in the beginning I experienced tiredness and flu like aches and pains (manageable with paracetamol). Nowadays just a day or so of being more tired than usual.

Although hair loss is recorded as a side effect, I havent lost any hair.

As for will your hair grow back after radiation... I've had 2 lots of radiotherapy (though neither was WBRT), my hair gre back (curly at first).

My thoughts re your trip are...

Take any daily meds plus anti diarrhoea/sickness, paracetamol tablets just in case. Most of all pace yourself .

It would be sensible for you to wear a mask as you know your immune system will be suppressed.

I wish you and your parents a wonderful trip.

Best wishes xx

[life8888]

I have my scan today after coming off wbrt! So sorry to hear about your progression. I don't think you're crazy if you go on your trip. I also went on a trip in May that I was looking forward to. But I got covid so be prepared for that. My family and I weren't, but fortunately we made it through ok. My onc wanted me to make sure I had medical travel insurance and understand my insurance international policies. Also had to bring all my meds and emergency meds in case something went wrong. Try to talk it through with your onc ? Might put your mind at ease. Also my physical therapist wanted me to bring pain meds, a muscle roller and an ice pack 😀.