TDM-1 Kadcyla. Side effects?

Sorry late to the party.

I'm  in a similar boat to you two. I had my 2nd Kadcyla infusion last Tuesday and then the prep set up for Radiotherapy Friday, which I start 18th Oct. I will be doing the hold your breath techniques too, which is difficult lying down on your back with your arms up..... The hospital I need to attend for the Radiotherapy is nearly an hour away from my home which is a bit of a bummer.

I have found this second round of Kadcyla so far more challenging so far. I sleep OK at night, but anytime after lunch my energy levels start dropping dramatically. I start feeling like I'm  coming down with the flu, but have NO raised temperature.

I started with Indigestion and heartburn back in January when my cancer treatment began, and it keeps on giving, which doesn't help at all.

I had an reprieve week after my first round as the full dose started affecting my feet again with peripheral neuropathy. I was hobbling on standing. So far this time that is better. One less thing to worry about.

I had my flu and covid jabs done in my three week after chemo. Both in the same arm at the same time. Was lucky as all ai had was a slightly sore arm.

Hope you don't mind me tacking on to your conversation. 

Keep safe and continue smiling  

Hi Klee65.  I’m feeling pretty tired whtjwer it’s the radiotherapy or the kadcyla I don’t know.  Both maybe.  I stressed about holding my breath but it’s been ok and if you can’t hold your breath there’s a button in your hand you can press and if you let your breath go the machine automatically pauses and then when you’re ready you take another breath in and hold it and it finishes the treatment.  Try not to worry about that.  Have you had meds to help with the heartburn and indiigestion?  Sorry to hear about the neuropathy.  I had that with the last chemo and had to reduce the dose.  I’m guessing it may happen with this one too. It’s annoying.  I felt like my legs would give way at times.  And I couldn’t close the buttons in my shirt. But it all resolved within a few weeks of finishing the chemo.  Keep in touch with us and good luck with the radio.  You’ll be fine I’m sure xxx

Hello Klee65, welcome to the conversation. Sorry to hear you've been finding Kadcyla challenging so far, hope it gets better for you. I do feel slightly apprehensive about what might be in store for me as the nine months of chemo progresses, it seems like such a long stretch. All the best to you x

I have an update - I am stopping Kadcyla as it is suspected it has had a detrimental effect on my heart function. My latest echocardiogram showed a significant decrease and I have been referred to the Heart Failure Unit, the title is rather scary but it just means the heart is failing to function as it should. I had an initial assessment last week and they have upped my meds and liaised with oncology. I spoke to my consultant oncologist today who agreed that it would be in my best interest to stop the treatment. I will be having another echocardiogram in the next week or so to see if there has been any improvement. I am also on course to start my course of radiotherapy in the next couple of weeks. How is everybody else getting on?

Sorry to read this.   It is a risk with this drug.  I’m sure I recall being told that it’s treatable if it happens.  Will you be having a different drug instead?  I haven’t yet had an Ecco since starting.  It’s hard in the liver too and they’re monitoring that in my case.  If my tests continue to show my liver struggling then I will have phesgo instead.  R u feeling ok about the radiotherapy?  

Hi, I'm not sure if I will be put on anything else - they are waiting to see my heart function improve before considering a different treatment. As my consultant said, Kadcyla is a relatively new drug and as recently as a couple of years ago I would not have been offered it, but I suppose they thought it was worth a try. It seems to be a bit of a juggling act between preventing the cancer returning, and protecting my heart. I am continuing with Letrozole though so that is a bit of reassurance. I wonder why you haven't yet had an echocardiogram - I thought it was standard procedure with Kadcyla patients. I haven't heard of phesgo, is it similar? I am feeling OK about the radiotherapy, particularly as I now only have to have 5 sessions and not 15 as originally suggested. All the best for now x

I think phesgo has the same immunotherapy drug as kadxyla but no chemo element.  It has similar risks to the heart and lungs.  I’ve been having phesgo every three weeks since the start of May until I started the kadxyla.  So I’ve been having Ecco’s every three months.  I had one at the start of September.  I hope your poor heart recovers quickly.  And yes it’s constant weighing of risks and benefits.  Let us know how you go xxx

Hi  Angie463

Sorry to hear your news. The Phesgo is mixed in with the chem element of Kadcyla, not sure if that the part that has the side effects on your heart listed against the Kadcyla. I was having the Phesgo as an injunction into my leg during first lot of chemo.

My oncologist did mention a different drug to me a while ago but it's not used as a adjuvant treatment, which is a shame. Hope the cardiologist gets you sorted soon. 

• Keep smiling xx

Just to give some of you hope,  I will have my 13th cycle of Kadcyla on Friday.  Next heart ECG on Tuesday.  I have had little to no side effects and have been able to carry on with life as normal.  Certainly nowhere near as brutal as previous chemo treatments.  I am 74 BTW.  Good luck to all on this journey. Xx