long term herceptin and side effects

Hi all, I’ve been on herceptin for nearly 6 years and initially seemed to tolerate the drug extremely well, I had a few side effects mainly intermittent diareah and constipation also stuffy nose all of these I can put up with but recently I’ve been feeling very tired or fatigued to the point where I find myself sleeping a lot even during the day. I am due to have my usual 3 monthly heart and ct scans shortly followed by a results appointment so will ask about it then.  In the mean time I was wondering if anyone else long term herceptin users have experienced any side effects? especially fatigue, thanks in advance for any tips or pointers. Xxxxx


ive been on herceptin for 9 years and have had a number of side effects including a runny left eye! And at times I’ve had quite extreme fatigue, but usually occurring about 4 days after receiving the treatment. Occasionally Ive been very fatigued at other times, and this has usually coincided with a drop in my ejection fraction, shown up at my next echo, or once when I accidentally took the wrong dose of my heart meds (losartan and bisoprolol). It’s good that you have a heart scan due soon. Do mention it to your team. In the meantime take it easy on yourself and do accept help with household chores ( I can talk - I’m hopeless at accepting help, but having to learn!)


I have had threes diagnoses of Breast cancer in the same breast (2000, 2003, 2007). Since the third diagnosis in 2007, I have been receiving Herceptin and an injection of Faslodex when I see my oncologist every four weeks. (I also had a one year course of Herceptin/Arimedex after my first recurrence in 2003.)


i am blessed to be responding to the combination for 9 years! My side effects are very tolerable - headaches after treatment, bad nails, thinning hair, fatigue, sore inside of my nose, and easy bruising on my hands and forearms.