I am HER2- and was given this "infusion" on 11/18 after being told I was out of any more options and had about 3 months left. It has been hell since then. I do not believe it was the medication as I did in the beginning. I believe it was the errors of the cancer center I have been going to. I am now in process of reaching out to the FDA (that fast track approved this and the company that makes it) to tell them of my permanent side effects and hoping they do an investigation into the cancer center that administered it.
I had my first infusion at noon and was supposed to wait until 3 pm to have an MRI. I apparently went home. My palliative care doctor I could hear calling me non-stop and hearing fear in her voice. She called me about 12 times saying please pick up if you are there. I did not even know I was home but I was on the floor and could not move. I had a hallucination I was in another apt. and people were trying to hurt me and it was very vivid and real to me. The hallucinations were terrifying. My doctor then called the police (who also brought along EMTs) to do a wellness check on me. They had to break down my door and they found me in the bathroom with "blunt head trauma" talking gibberish. They estimated I had been there for like over 4 hours.
I was then falling non-stop. Never sideways. I fell backwards and hit my head on my hardwood floor several times. Once I fell, I was never able to get up. Two more times, emergency EMTs had to come to my house. I had no idea what happened and then when I tried to call the cancer center, I was told I was NOT allowed to speak with my doctor or leave her a voicemail. I was very confused bc I had no memory (which are returning now) of all that occurred. I never even knew until a week and a half later that it was my palliative care doctor that called the police who broke down my door and brought me to hospital.
I am now using a walker and to my horror, I have lost all my hair and am now almost 100% bald (I was told minimal hair loss!). I look horrible and now I look very sick. I now have to get at home hospice. You have no idea how angry and upset I am that I went with this treatment.
But from what I am reading, I was NOT a candidate for this. It states patient "should have had chemotherapy previously (I never had chemo, I was diagnosed at stage iv) or the patient should have had surgery where the cancer was gone but then returned." I never had surgery and I have been in treatment for five years.
This treatment has destroyed the good quality of life I was having until the end. Now, everything is different. Like I said, I do NOT think it was the medication. It was the careless sloppiness of the cancer center and my onco. Oh yes, my feet and legs swelled up about five days after this treatment to the point I could not wear shoes. I live alone so not being able to leave my apt., bc I could not wear shoes made things very difficult. My depression over how I am now versus how I was (even though I had stage iv and all treatment was over) I had a good quality of life. I did not look sick at all and I was able to walk to stores and take public transportation and I was in NO pain. The cancer is now in my lungs, spine and 100% of my liver but I still felt well which was surprising to me. Now, I feel sick.
For me, it was and continues to be a horror. I am going to call the FDA again. Never just trust your onco, do a bit of research first when trying fast-tracked options.
Oh, and according to my onco's calculations, I should be dead already. Nobody knows but God.
so I had taken car service and went food shopping. It was scary though bc for a few days I had nothing in the house. 
Enhertu infusion #2
Enhertu next treatment??
Enhertu
