Kadcyla (TDM1) treatment

Well done on completing 14 cycles and thank you for starting this thread it has been a great help to me, good luck xx

That's brilliant news LoveLove2, I think you were starting 10 days before me way back in February and I've dropped a little further behing due to an extended cycle early on but the finish line is now in sight for me too. I'm so grateful for this thread and the connections for side line conversations it's given me with others as we jolly each other along and help each other through all this by hearing others' experiences. Thank you to you and all the very best going forwards, xx

Hi…first time posting but glad I found this thread. I am triple positive Grade 1 stage 2b and just finished neoadjuvant chemo. Mid scans show shrinkage but surgeon thinks will be partial response and will see if spread to nodes during surgery this month. Oncologist has mentioned Kadcyla after Radiotherapy Just wanted to know along lines of SE’s whether some of you found it is cumulative ( I will need to get back to work!) and also does it affect hair..and more importantly I really struggled with taste with the THCP chemo I was on…I can’t bear the thought of that going on for another 8 months or so but see a couple of mentions in thread and trying to gauge whether it might effect me as was a dominant SE for me ….Thank you….

I have just had my first Kadcyla on Wednesday. I feel a bit tired but other than that no real side effects so far. No odd tastes at the minute either. I also had Neo adjuvant chemo with a partial response, thank heavens they totally excised my tumours at mastectomy anc no node involvement. Good luck with your surgery, stay positive, it really does help xxx

Thank you Mandi…it’s all a bit daunting isn’t it…I think my chemo cocktail maybe geared to the HER2 positive bit so maybe not so good at working on other Er+/ PR+ bit…but keen to zap the HER 2 as potential aggressive…could be wrong on that theory…..than you for your kind response x

Hi KJ6 - hope Wed went ok.  My SE are up and down - seem fine and then on Day 5/6 feel really dreadful, very achy, bad joint pains and fatigue and no appetite and hard to keep hydrated as taste bad.  Helps I know if you drink a lot of water etc. It takes me about 10 days now to come through but it is manageable and I am living my life as best as I can, working from home etc.  Not doing much socialising indoors as don't want to get Covid again (had it badly in May) or anything else that may delay treatment.  Number 7 next time so that will be half way.  Good to hear that your SE seem to get more manageable.  Gotta keep going x

Hello LifeslikeThat (great name)! I've been on 75% since dose 2 (and even dose 1 was 88% due to underlying peripheral neuropathy that was an issue pre-breast cancer) so you may want to ignore my experience but on the bright side I had #13 this week. It's a very different experience to the neoadjuvant chemo. My consultant said that the key cummulative side effect is fatigue, but I've not found that to be the case. Overall I feel I've been in recovery mode from the neoadjuvant chemo, mastectomy and radiotherapy so feel better than I did at the start of the Kadcyla. Hair is growing though I think more slowly on Kadcyla. Taste for me it's more of an unpleasant taste in mouth rather than altered taste buds (I remember water tasting like sewage at times on the neoadjuvant). I've done a teeny bit of admin work from home but that's because I'm a nurse but am not in a team so there's no back up if I have a harder day and tricky for my workplace to get flexible cover. I have however felt that if I were doing a desk job and could be flexible with my hours then it would have been achieveable for me to work at least part time on Kadcyla. I think it's key to keep life simple and try to pace yourself. Hope this helps! xx

Thank you for your positive reply…I have a little neuropathy from the Docetaxol (about 3 out of 10) if I were to score it but hoping that will go…mainly fingertips. That gives me hope Re: tastebuds I think I could deal with unpleasant taste but the altered tastebuds are awful. I agree..think I will need to pace myself but like everyone else ..so want this to be over .

How is everyone doing? Had #7 on Tuesday - issues with getting cannula sorted which was pretty grim - but all being well half way there now hope you are all doing ok

Hello Camino Girl

I’m about to have no 13 on Tuesday, last one is scheduled for 20 December which is strike day, which has sent me into a spin as I’ll have had 23 treatments once every 3 weeks. The finish line is in sight, but now seems as though it’s out of my grasp! My side effects have been minimal, just tiredness and a bit of nausea. Wishing you all well