Kadcyla (TDM1) treatment

Thank you, Hope your feeling much better sounds like you’ve had a pretty crappy time ️ good luck with your first radiotherapy session tomorrow xx

Hi KJ6 I had Peripheral neuropathy with my initial Chemo then it stopped. However I have experienced some milder neuropathy in my toes with Kadcyla for a few weeks, but it has since stopped. Take good care of your skin. A few weeks after I completed radiotherapy my skin broke down underneath the breast and was weeping, I had to use a antibiotic steroid cream to heal it.

Thank you x

Thank you for the advice, I do moisturise 4 times a day and I use sanex to bathe so nothing too harsh, I also take my bra off when possible to ensure air gets to the affected areas ( advised by radiologist) I will defo look out for any broken/ weeping areas xx

I will definitely put this on my list of questions for my onc. 
thank you x

Hi Camino girl, how did your radiotherapy go? Hope all went well xx

So far so good - only had 2 done but glad it is started - they are amazing at the NHS

Glad it’s going ok, the NHS are superb we are very lucky to have iit xx

Hi Dokur Kingfisher,

I had my 3rd Kadcyla on Wednesday after a 6 week break due to me having radiotherapy. My PN seems to be worse on an evening especially when I get into bed, burning soles of the feet not so much pins and needles but tingling sensation and restless legs so due to these lovely symptoms sleep is very sparse I have no PN in my hands and hopefully this will continue to be .

I have ordered a pair of the ice socks you have mentioned but also whilst attending the cancer centre on Wednesday I was chatting to a lady who said she actually purchased a dog cooling mat which she puts in the bottom of her bed on an evening so she can cool her feet down which I thought was a good idea so that another item on my PN shopping list.

I have only started to have PN symptoms since commencing Kadcyla I had no symptoms durning my previous chemos but speaking to the cancer care nurses they said it could be a late side effect of the taxol I was on and they will keep an eye on it because apparently PN is graded. 
I have started to become more active now as my previous treatments really knocked me off my feet, chemo, diep surgery so have now started to walk my 2 miniature dachshund’s. My plan is to return to swimming once my skin has healed from surgery and radiotherapy once I get the go ahead from my Onc.

Can I ask if you have pre meds before your infusions.

Thank you for your detailed reply much appreciated xx

Hi KJ6, your PN symptoms sound similar to mine, it really is a burning sensation to the extent where I think if I put my feet in cold water you'd hear a sizzling sound  and likewise it's evenings when I'm sitting still and in bed that I really notice it. So far I've not had restless legs on the Kadcyla (but did on taxol) and that's miserable too. I've not heard of cooling mats, I've sometimes taken frozen sports gel packs to bed as the ice socks seem a bit heavy duty for bed, and then managed to drop off to sleep whilst cooling my feet, I've then woken with very cold feet ... sorry, just enjoying the emojis! 

Following on from Rumple01's suggestion I spoke to my onco about Vit B and also Alpha Lipoic Acid. She wasn't adverse to me trying either/both so have started on ALA over the weekend. Like Vit B, it's involved in nerve protection, but as with icing feet and hands, no definitive evidence, seems to work for some people but not everyone.

Great that you're starting getting out and about again with your dogs, hope you start to really feel you are re-gaining your strength.

Kadcyle #6 for me tomorrow with Bisphosphonate (Zometa) infusion #1, am slightly aprehensive! xx