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.

  • You have to do what's best but before stopping think if you have fulfilled the things you want to ive not got cancer but my dad died within 5 weeks of diagnosis the treatment didn't do him well it made him worse remember that ultimately death is on the horizon once you stop my dad refused radiotherapy .I think you know that your body is not coping with treatment right now decide how you want to live the time you have left  hope I haven't offend you in anyway 

  • That must still feel very raw Your fathers death and how suddenly everything happened. I am deeply sorry for your loss and hear your pain.   And earlier in my treatment I prayed that I could complete all the treatments and that I would not have to stop because of side effects.  the chemo  was touch and go as my bloods kept plummeting and I felt the same way when I had a month of radiotherapy with a frozen shoulder that made it an agonising ordeal. But tick ️ did it. Did what had to be done. I just wanted to give myself the best chance.however, this is different. The circumstances are different. 

      I am officially cancer free post my surgery. The active cells in my sentinel node are now in a lab somewhere.  Onco said, two years ago I would just sign you off now and wish you good luck and of course hope you don’t fall into that twenty odd percent that get it again. but since then kadcyla has become available as an insurance policy to woman with early breast cancer .So....

    It’s great this drug improves your odds by ten percent. But it’s attacking my nervous system , it’s not working for me.  So I will discuss with onco possible alternatives and I will of course do as many things as possible to support my recovery . I’m sure many of the woman here are looking at intermittent fasting ,exercise,  aspirin , the Swedish antihistamine study and the plethora of off label drugs that are now available ... I’m intending to live for as long as possible and to make my health my priority.   I’ve done all of the treatments that were asked of me. I’m grateful for them and the chances they give to continue to live cancer free going forward . But this particular drug and it’s side effects do not seem worth it waying up all the aspects of my situation. 

  • 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.