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TDM1 - any experience?

3 REPLIES 3
50inCambridge
Member

Re: TDM1 - any experience?

That was meant to say “Well done for keeping going “ at the end, grrr to predictive text! 

50inCambridge
Member

Re: TDM1 - any experience?

Thanks Jacksy, 

Yes I’ve had my first treatment 2 weeks ago now and it did make me very tired but I’m hoping this was also due to the radiotherapy which only finished 2 weeks earlier. The hardest thing is having an expectation of how things will be and then being disappointed, so I’ll try and prepare for exhaustion next time! 

This is my primary BC and they’re treating me with TDM1 to try and prevent it returning as I’m high risk for secondary. I haven’t started checking my breasts for a new lump yet as the thought is too depressing and I’m hoping it’s too early for a return seeing as I’m still having treatment - but I have no idea at what point I should start to be alert or worried about secondary cancer. 🤷

Sounds like your treatment is long and hard. Well done for my going 🌈

 

Jacksy
Member

Re: TDM1 - any experience?

Hi there 50inC,

Yes, I was on TDM1 (Kadcyla) and it controlled my secondary bc for 7 years! Are you a primary or secondaries girl? I think it’s recently started being used for primary patients.

I found it much easier than the FEC/taxol I had first off, and easier than the current chemo I’m on (Enhertu). It did give me nausea and fatigue in the first week, and caused me peripheral neuropathy, but I managed to continue working and very active and with no hair loss.

I wish I could go back on it, as, apart from when I was on herceptin alone, it’s been the easiest to tolerate. 
I wish you all the best with your treatment, you’ve probably started by now

Jx

50inCambridge
Member

TDM1 - any experience?

Hi all, 

I’m starting TDM1 in a couple of weeks and will be on it for 9 months. I’ve been told it’s a fair bit milder than the previous ‘full strength’ chemo I had pre mastectomy. Just wondering if anyone’s had it and can tell me how ill and tied I’m likely to feel. Thanks 🙏🏼