What are the side effects of Kadcyla treatment?

Getting ready to start a new treatment can bring up many questions, and it's completely natural to want to hear from others who have walked this path. Kadcyla affects everyone differently, so connecting with others in this community who have experience with this treatment could provide valuable insights as you prepare for your journey ahead.

My side effects weren’t too bad the first couple of times. I do have fatigue- but not debilitating-some aches and joint pain but I also have lupus and ra so that could be some of it. A bit of nausea, headache is my most troubling symptom. Some days I feel fantastic, others are slow and just blah. Eating is also an issue for me. No appetite at all. My husband makes me eat something every day, makes me stuff he thinks I will like. I try but it’s exhausting. Definitely stay hydrated. I just finished #6 and have 8 to go😩

I've had 2. We lowered the dose after the first one because it made my neuropathy worse. This time has been better. I get nauseous occasionally, but not enough to medicate. Appetite's been good. I'm tired but I'm also recovering from radiation. On the whole it's been SO much easier than the TCHP that I'm not complaining! I go in for my third infusion on Tuesday. I'm curious if the accumulating effects will worsen my side effects.

I just finished 14 rounds of Kadcyla. Absolutely easier than TCHP but I felt like it was more of a struggle after 10 cycles. The fatigue, neuropathy and joint pain. Try to stay hydrated and I took extra electrolytes each week because I didn’t always want to eat healthy. Everyone stay strong - I swear the weeks and seasons will pass and you will be done.

First treament KAYCLA in hospital with INPACTION bad. I took a bootle of magnesium citrate and didn't move. They had to dig so out. The oncologist cut back on second KAYCLA, and the doctor gave me medicine for bowels. After each treatment used for two days, then went to colace stool softener and senna. Then, on number 8, INPACTION again. He stopped KAYCLA. But had to stay on herceptin. But me on lizness. I have never had constipation. Now I still have it a year later.

Kadcyla (scheduled infusion, every 3 weeks) was my 2nd line of tX which i started on in October 2021 and stopped this past March. I’m also on hormone therapy (tamoxifen). I’m living w/mBC and Kadcyla was “special” to me ‘cause it was more tolerable than TCHP (my 1st line; which we stopped after the 2nd cycle due to elevated enzymes). For me, the side effects of being on Kadcyla were cumulative and were like a cruel game of whack-a-mole: tiredness (5 days after tX), neuropathy (near constant), minor digestive issues (infrequent), and pedal edema (constant). In any case, I found a rhythm + knew what to expect being on it. I took a week off after every infusion (meaning, no in-person appts whatsoever, other than acupuncture). Also, hydrating (+ electrolytes usage), yoga, walking, and physical therapy improved my tolerance. Kadcyla was tolerable, for the most part, during the 5 yrs I was on it. The major issue I had to contend w/though was persistent neutropenia - even w/lowering the dosage numerous times + pausing chemo (I call it “breaks”). My onco finally switched me to targeted therapy (phesgo) this March. I just had my 3rd cycle of it and due to the extreme tiredness I’ve been experiencing (+ other unsexy S.E.), I can say that I definitely miss MY kadcyla (crazy as that might sound). I knew + understood Kadcyla + vice versa. Since everyone's body is different, Kadcyla works a little differently for each of us. Sending you - and every individual on this path - healing vibes + continued good health.