Kadcyla (TDM1) treatment

Well done - best to do all you can to help yourself and the anti-sick does work. PN only came on in my hands, fingers and toes - feet are a bit sore now but was not really an issue. However, everyone is different so make sure you report any symtoms to your team, I keep a day by day account of how I'm feeling between each cycle as it helps to remember everyone to tell them before the next one. best

Thank you Camino girl. I've been keeping a diary of how I'm feeling and doing each day.

I hope your PN lessens in time.

Hi Thumper, I finished Kadcyla last year November. I had a 4.5cm tumour that was 0.5 cm after initial chemo treatment finished. Following lumpectomy and radiotherapy I started Kadcyla. I found it easier than the initial chemotherapy but experienced mild symptoms, pain in legs, loss of  , appetite for a week, nausea and neuropathy in hands. I did go back to work briefly while on Kadcyla, but my cycles were on a Friday so I had the weekend to recover as my major symptoms lasted 2 -3 days each cycle, but I did struggle at work a bit. Kadcyla affects everyone differently so do what it best for you and what you can manage in regards to work. Hope your future cycles are easier on you. Take care.

Hello Thumper, I hope your 2nd treatment was better than the first. I appear to have got off lightly with the first with only a bit of tiredness for a couple of days. My second treatment will coincide with radiotherapy so not sure what will happen.

I wonder if the effects of Kadcyla are cumulative like my first TCHP chemo was. Does anyone know? 

Very best wishes,

Margot

Hi

been off the forum for few months now. Just want to say kadcyla for me, every 3 weeks for 12 months finished last June. I didn’t have many issues and I returned to work as nurse in the community though phased return. Retired last year also but been back working 15 hrs a week since last august. Plough through it, they reduced mine by 10% due to peripheral neuropathy but it’s away now . Good luck x

Hi 

Margot,  sounds like you've had a good start and thinks will go well with you. I hope this continues. 

Hmfm,, glad you're doing so well.... encouragement for us all.

Lovelove2, it sounds like your tumour and treatment was the same as mine. I had 3.5cm tumour that eventually they decided it had partial response with 10 to 50% left.

Thanks for all your replies. I'm so sorry for the delayed response but I haven't been feeling so unwell and on Friday night had to go to A&E with extremely high temperature. They did loads of tests including x-ray, ECG, Ultrasound, blood tests...lots of those and immediately admitted me. 

Results showed that the liver enzyme was sky high... 10 times the highest it is ever should be. Both. Blood pressure and temperature was sky high. Put on infusions of paracetamol, antibiotics and fluids.

I felt so unwell, and so cold.. Thankfully feeling so much better today, although still in hospital. But it looks as though I could go home either today or tomorrow.

Just to reassure anyone reading this, this is not normal. Infact the oncologist doctor who' came to see me today seems to think it's an iteration between kadycla and one of my other medications. They should have checked this out before though. Should have been avoided.

Good luck everyone

I’m so sorry, Thumper- that must have been really scary. I’m glad you’re on the mend now. I hope your side effects will settle down now they know what’s causing them but, like you say, it shouldn’t have happened in the first place. Please be gentle with yourself and let others look after you.

Sending love,

Margot

xx

Well,  I am due to have no 5  Kadcyla next week. I decided the side effects bloating, constipation or upset stomach, wind, tender stomach, (oh what a lovely list!) were rather the same as IBS so I bought some pills from Boots called Colpermin capsules. I take one before food and it does seem to help, for me. Just a suggestion..... I am not a doctor.

I have tinitus all the time and P.N in my 2 middle fingers- pins and needles, but my feet are the worse, and feel like they are burning especially if I am on my feet all day at school, so I do try and sit down when I can. I read a book on PN and cycling and swimming are the best form of exercise. I had PN in my hands last time I had cancer, it was so bad in my hands it would wake me up  in the night and my hands felt like they were embedded in lumps of concrete, feet just lumpy. My doctor put me on amitriptyline which sends you into a deeper sleep and did help. I carried on with it for migraines and then could not get off it so I am still on it now! I do think I feel the side effects have got less and maybe our bodies get used to it. Good luck to you all and keep strong Breedy xx xx

Hi KJ6. Can’t access our private group which is why I haven’t messaged you. If you can would you mind sending me a message so I can maybe get back in xx

Hi Dokur. Can’t get back into our private group which is why I haven’t messaged. Any ideas xx