Had enough and want to stop kadcyla

Hello all

im at the year mark on my treatment journey - BC & nodes - triple positive. Now find myself hitting a wall. Have had Chemo / 6 blood transfusions/ lumpectomy - some active cells were then found in lymph node -so  radio and tamoxifen -a year of herceptin and have had TDM1  kadcyla - 7 rounds. 

Thought I was doing well and we agreed that I seemed to tolerate the kadcyla to start with but last three have been horrendous. I’ve had terrible anxiety - palpitations and find that for about 4 days I can’t eat or hardly sleep...it’s a level of permanent anxiety that I’ve never known before. Then. A week  passes - I feel more like myself and by the third week I feel like totally back to normal. But these side effects are really shaking me up. I’m now starting to have panic attacks when I go to the cancer centre and physically want to pull the needle out of my hand and run out. I think I may be developing PTSD..symptoms.

so my dilemma is do I stop kadcyla ( will see onco soon but he has messaged me that I can stop) and live with the knowledge that I may be reducing my chances of survival. My instincts are to stop. It’s feels like my whole self is saying - enough of this poison. 

my understanding is that her2 is very aggressive and  herceptin gives you a 77% chance of survival but kadcyla ups that to 88% . Obs I’d take the 88 over the 77 but I feel like I need to halt this as I feel myself unravelling. Maybe it’s the successive treatments building up? I don’t know.  I know I’ve come so far and don’t want to be beaten by this but....it’s a tough decision.

Parents
  • Hi,

    I just wanted to message as your post really resonated with me. I hope you are doing well? It sounds like it's been a very difficult time for you. I'm not sure what you chose to do but I hope you are happy with your choice. 

    I am about to start Kadcyla in a few weeks time. I've had chemo which was horrendous, surgery and will be having radiotherapy next week. I've been very tempted to just say no to the Kadcyla as I feel like i've had enough now and I've been constantly ill since i stopped chemo 2 months ago. I'm in horrible pain from the Herceptin and just generally feel terrible. I'm going to give the Kadcyla a try and just see what happens. I took Tamoxifen which lasted a week as I had horrible side effects and am just worrying another drug is going to make me ill. But we shall see. 

Reply
  • Hi,

    I just wanted to message as your post really resonated with me. I hope you are doing well? It sounds like it's been a very difficult time for you. I'm not sure what you chose to do but I hope you are happy with your choice. 

    I am about to start Kadcyla in a few weeks time. I've had chemo which was horrendous, surgery and will be having radiotherapy next week. I've been very tempted to just say no to the Kadcyla as I feel like i've had enough now and I've been constantly ill since i stopped chemo 2 months ago. I'm in horrible pain from the Herceptin and just generally feel terrible. I'm going to give the Kadcyla a try and just see what happens. I took Tamoxifen which lasted a week as I had horrible side effects and am just worrying another drug is going to make me ill. But we shall see. 

Children
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