Kadcyla (TDM1) treatment

Hi Camino girl, I'm sorry to hear you have PN too, it's awful isn't it. Mine is still bad although it has improved after I had a lignocaine and magnesium infusion via the pain team. I also take Gabapentin 900mg three times a day, Amitriptyline and morphine tablets. They have put me on the waiting list for another in a few months time. I hope yours improves soon too. 

Take care xxx

Hi.

I hope you don't mind me jumping in here.

I'm about to have #2 Kadcyla today. With my first one I had very bad headaches, nausea, fatigue, aches in my legs and lost my appetite. Does this get any better? It took me about 10 days before i felt any better. I was hoping to go back to work, but now I'm wondering how this is possible if it's going to be like this every time. I did feel okay for the past week and if I could only feel like that al the way through it would be more doable. 

Has anyone else worked through recieving Kadycla that didn't involve working from home?

Any advice would be appreciated.

Thanks

I have just had no 3\14 kadcyla and I am on a 3 week phased return as an art teacher in a Prep school. I have dry mouth, aching bones, chills but feel hot, headaches and trouble sleeping at night as well as P.N My stomach feels windy and bloated and tender, almost worse that my original 12 lots of chemo where I lost my hair. I had a 2cm tumour grade 3 which had not spread, but that only shrank to 1cm hence, having Kadcyla.

I was so upset when they said I had to have this and it will take 11 months. (22nd December).

I had a different breast cancer in my other breast,ER positive and HER Negative  13 years ago, so they said I was just unlucky to get  a new invasive ductual  carcinoma HER positive.

I am not sure I will be able to keep up the infusions and work full time, but I need too. I am going to ask if they can reduce the dosage so I can keep going with it. sorry I can't be more positive.

Hi Thumper - it does get better.  I have now completed 13/14 cycles.  I found that after about #5 it seemed to get easier maybe even before then...can't quite remember.  Drink lots of water day before, day of and day after IV and rest when you need to.  I have been working from home.  It is tough and long haul and yes I had aching limbs, headaches etc but I am very glad to have got to #13 - I have actually finished now as my PN started to get bad and they did not feel it was good to risk going any further - I am happy to have got this far.  You will get into a rhythm of it I'm sure.  Be kind to yourself, exercise if you can and eat healthy.  Good luck 

Hi Breedy

Thank you for your reply. So sorry to hear that this your 2nd lot of breast cancer, but I believe that things have come a long way since then and so there are more treatments available.

My breast cancer was  about 3.4cm, her2 positive ER positive and OR positive. At first the scans seemed to indicate that the chemotherapy had totally destroyed it, but when they operated they found that there was only partial response...10%to 50% remaining! Hence now I'm on Kadcyla.

I have very similar symptoms to you, but I don't have PN but have felt sick. Not too bad, but the consultant seems to think that I shouldn't be having nausea and didn't initially give me any antisickness till I asked.

I've just had my second session and so far find the prospect of going to work impossible for the week directly after the infusion, but possibly disable after leading up to the next session. I think it's time I find a way to go back to work...I've already have had 15mths off and I need some normality. I hope that they can reduce the dosage for you so it'll be more doable for you. Have you considered going part time for awhile?

Hi Camino girl

Thank you for your reply and advice. 

I had my second infusion yesterday and drank lots during and after, and plan to carry on drinking lots today.,..not alcohol! So far it seems to have helped. So far very little nausea...not sure to take the antisickness because it's not too bad ATM.  At what stage did your PN start?

Being a dispenser for a community pharmacy, i can't work from home and it involves standing on my feet all day for long hours, so feel anxious that I won't be able to do it. I think that they'll let me do a phased back to work, but for how long? I don't think I'll be up to doing my normal hours till I've finished... January next year!

Glad to hear that you've now finished, but sorry about the PN.

Well done - I took the anti sickness if I felt even a little nauseous to be honest before it got too bad.  But it wasn't that bad to be honest.  PN started towards the end I think No.10 ish

You can do this...keep going

Hello!
I’ve been reading this thread with interest because I started on Kadcyla yesterday! I was initially told by someone who’s just finished that there were few side effects, but that seems to vary considerably from what I’ve been reading and from what the oncologist told me.

So far, I’ve been feeling a bit tired but nothing else. When do the side effects begin to make an appearance? 

I was devastated when I found out that this was my treatment pathway following a partial pathological response. It feels like a marathon that I’m not even half way through. It’s relentless. 

Good luck everyone.

Margot

Hi Camino girl

I' eventually took an antisickness tablet and it really helped. Thanks. 

Can I ask does your PN cause you problems with walking or standing? I'm on my feet all day when I go to work and I'm a bit worried about PN and how it'll effect me.

Hi Margot

I hope you're still doing okay 

Like you, my tumour showed only partial response, and I felt so upset when i discovered that I had to have Kadcyla. It felt as though I was going backwards.

I had my 2nd infusion on Wednesday, both times I was very tired afterwards with a bit of nausea, bloated stomach, a lot of wind. The headaches and pains in legs.. joints and  bones last time didn't art till the weekend. I also lost my appetite during the days after and didn't really enjoy food. For the full week after I didn't feel good at all..no energy and very tired. This time I drank loads of water before, during and the day after the infusion. I'm hoping that this will help and this time I'll escape the headaches and aches and pain.

Some, I hear, don't have anything more than a bit of tiredness for the first few days, then they're fine. I hope that's how it'll be for you

Best of luck. Let me know how you get on