Enhertu side effects

[Ursula_I]

Hello dear ladies

I am about to start on Enhertu and have heard about rather scary side effects!! I am moving on from Kadcyla because I have progression in the brain 😰.

If you are on Enhertu could you tell me how it has been for you? Trying to prepare myself...

Thank you 🙏 and Happy Christmas / Happy New Year 🎄

Lucy x

[Supermary]

good morning

I have been on ENHERTU in s trial since June 2021

I go to a cancer center in NYC

I have Stage IV uterine cancer and after doing a lot of research and discussing with my ONC I signed myself up for the trial

I had hospitalized COVID April 2020 and no one knew I had cancer

I wax diagnosed with stage 4 cancer June 2020

I had. Debulking surgery and 6 rounds of carbo taxol and was declared NED Jan 2021

I entered a blind trial for selinexor a pill in January and the cancer came back in April

I am HER2 positive

I started ENHERTU And got a great response

The side effects at least for me have been bearable

I cold cap with Paxman and have not lost my hair which has been growing back since the carbo taxol

I ice my feet and hands and to date no neuropathy

I do get some nausea and constipation but quesy drops and senekot colace helps

ENHERTU is an infusion mine is 30minutes premeds 30 minutes the drug then about an hour cool down of the ice cap

I work full time and have two kids

Stay positive thst is essential and rest when you are tired

My nodes have not returned to date and have either disappeared or shrunk considerably

I am going this morning for treatment

I go every 3 weeks as it’s trial protocol

good luck to you and stay in touch

Margaret

[Ursula_I in reply to Supermary]

Thank you Margaret, it is wonderful to hear you have had such a strong response. I am so impressed by your positive fighting spirit... and still working full time... wow!! I've had to take premature retirement (aged 52).

Thank you for all the advice. Unfortunately I can't do the cold cap because of tumours in my neck... my hair has been growing back on the Kadcyla after it all came out in June following whole brain radiotherapy... I'll be a bit sad to lose it again. Oh well. I have some lovely woolly hats! Let's see.

Thank you again, best wishes to you and your family

Lucy x

[Supermary in reply to Ursula_I]

hi Ursula

I’m no expert but maybe you won’t loose it again maybe it will just thin out a bit

Don’t despair . I use minoxidil probably not the best thing but I feel at this point I’d it helps I’m willing to try

On the positive side for me at least the drug is still working 1.5 years in

I have hope that others that are HER2 will have options when we had so few just a few years ago

read up on the drug

Get to know all about it and ask lots of questions

Keep in touch

Margaret

[jersey-jazz in reply to Supermary]

All that while working full time and being a mom to two children? God bless!

[Shelly1009]

Had my 8th treatment of Enhertu on Tuesday. The side effects for me so far have been tolerable. Days 1-4 I feel a bit tired and a little wound up from steroids at the same time. This is usually when the constipation hits buts it's more than manageable once you find what works for you. Days 4-10 I sometimes need a compazine first thing in the morning. I find that if I feel even the tiniest bit queasy that I can head if off if I stay in front of it. I'm still working 3-4 days per week, we went on a 2 week trip to the Galapagos less than a week after my 4th or 5th infusion. It slows me down a bit something from the fatigue in the evening but it hasn't stopped me from living my life and enjoying myself. Good luck!!

[Ursula_I in reply to Shelly1009]

Thank you Shelly, really informative. Sounds like you are managing to do a lot of things. Working 3-4 days... so impressed!

I hope I will be able to keep going like you. Praying for good results as well as tolerable side effects! Happy New Year,

Lucy x

[Verbena1]

hi Ursula, I’m linking to a similar post (which I also replied to) from 2 months ago…this will give you some more input from the board - good luck!

healthunlocked.com/share-me...