Kadcyla (TDM1) treatment

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Hi All,

I’m due to start Kadcyla next month.

I’ve had chemotherapy, lumpectomy and and recently finished  radiotherapy. 

Just wanted to ask how the side effects are if anyone is on Kadcyla?

  • Hi, 

    I have had 3 Kadcyla cycles already 4th tomorrow.  The first 2 cycles I had some bleeding gums that resulted in me having metallic taste for a about 4 days and reduced appetite. My last cycle I had no side effects just a bit tired for a day or two, which eased with rest. My last dose was reduced slightly so that may have helped with the side effects. My tumour was 45mm HER2 and ER + originally and reduced to 4mm after pre op chemo. Has the surgery and radiotherapy then started Kadcyla in February. Kadcyla is a lot easier than the pre op Chemotherapy. Hope it goes well for you.

  • Hi Camino girl, I'm early days having just had 2 doses so far. I think my tip would be that although it is generally well tolerated, I'd say still anticipate it being tough going. I think I had been too reassured that I'd find it easy, which overall it has been compared to the original chemo but gave me false hope and led to me feeling disappointed and a bit frustrated with my body not coping. Dose one was 2 weeks after radiotherapy so I was probably at the peak of side effects from that so was tired from the RT. My main problem is peripheral neuropathy which was an issue pre-breast cancer, the Kadcyla has caused a real flare up of this. I've been given an additional 2 weeks break after cycle 2 and definitely think I'm benefitting from that. We've managed to have a week away (originally booked for 2020)! I walked 10 miles on Monday and have swam in the sea today so whilst I'm moaning it's not all bad! I think (and certainly hope) I'm beginning to hit recovery mode. Go gently on yourself with cycle 1, particularly if close to radiotherapy. Good luck, xx

  • Danielle - many thanks and well done for completing all 14 of them - good tip to rest etc and I will stock up on chewing gum.  I have had awful oral thrush with all my chemos and subsequently so this could be an issue but we will see.  Nice to hear that you have coped and managed it well and been able to work & exercise etc.

    thank you

  • lovelove2 - many thanks and good to hear that you are finding it manageable.  My tumour was 28mm then reduced to 3mm after pre op chemo.  I am not starting my radiotherapy for another 3 months.  Thank you for your reply and support.

  • Dokur - thanks for your reply.  I am already anticipating it being tough!  It is the last thing I wanted but have to get it done.  I am not starting my radiotherapy for 3 months so I think I will be doing the Kadcyla before then.  Sorry to hear about your peripheral neuro - I had this with my last few chemos before op (not nice).  I love walking too!  Not sure about a swim in the sea me near (North Sea), Norfolk!  I will let you know how it goes and good luck with your treatment.  Many thanks

  • Hi camino girl

    I was Her2+ had chemo, lumpectomy and radiotherapy. Started Kadcyla the week after finishing radiotherapy . Kadcyla is a lot easier than other chemo drugs but I still ended up in hospital once with an infection also I only manged 11 out of the 14 cycles as it was affecting my liver function according to my bloods. 

    carolyn

  • Thanks Carolyn - yes I can see that it's not a walk in the park.....sorry to hear that you have had some issues and hopefully your liver will recover.  11 out of 14 is pretty good though.  Many thanks and all the best moving forward.

  • I have just had Kadcyla suggested as my next treatment after radiotherapy 

    I have searched online, and I can only find clinical studies in the US , that give the 88% decrease in recurrence, as opposed to the 77% figure with just herceptin 

    I would like to know if there are any other studies , whilst I was doing a degree in health and social care I had access to lots of clinical studies on all sorts of areas  from universities all over the world . I’m wondering if anyone has researched this ? 

    I did not have a good experience with docetaxel , and am therefore currently not impressed with only an 11% difference . 14 cycles of Kadcyla seems excessive given the  side effects during and afterwards For me personally I need to know more and weigh up the quality of life during treatment v possible outcomes 

    I think this is suggested if you did not have a complete response , and possibly there are still some rogue cancer cells lurking in your body

    i had a grade 3 , stage 3 invasive ductal cancer , reduced by 90% from 2.1cm tumour her2+ pre surgery 


    I cant  believe the NHS would set up an agreement with Roche on just the  results of the Katherine clinical study trial ?

    am I missing something ?

  • Hi Debs - as you know I am set to the have the same treatment. Personally I would rather have the extra 'benefit' from this treatment.  Having seen the oncologist and nurse on Wed they told me that it is much better tolerated than our previous regime - fingers crossed.  Naturally it is a personal choice and you need to make an informed decision based on your needs/wishes etc.

    all the best

  • Hi LoveLove2 - just wondered how you were getting on with your 4th Kadcyla.  I went to see my Onco and I am now having my radiotherapy first at end of May and then start Kadcyla probably in July.

    Many thanks