Chemo and Herceptin Side Effects

[ElaineM]

Hi,
I just read t donnelly's post in one of the Living Proof threads about the possibility of mistakes in the way drugs are prepared for infusion and felt compelled to share one of my previous experiences.
I was taking Herceptin and chemo. The doc also prescribed 5 different pre meds to prevent side effects.
I was experiencing 15 different side effects beginning with the first infusion of that combo. I discussed the matter with my doc and the other doc who took care of me in my doc's absence. Neither one of them took my complaints seriously. My naturopath was the only doc who tried to help me with those side effects. I decided I needed to talk to someone else. I called the drug company that made the chemo and talked to a pharmacist. He took my complete medical history and the names of all the drugs I was taking. We were able to indentify the drugs that were causing the side effects. He confirmed non of the pre meds was neccessary and explained why. He said the drug company would check into the matter. He also told me according to U. S. federal law he had to report the problem to the FDA. A few days later I told my doc who I talked to. He was very angry at first, but then he went and got the instructions for administering the chemo and found out pre meds are not absolutely neccessary. He withdrew all the pre meds. It took me a few weeks to get all those extra drugs out of my body, but I felt much better after that. The only side effect I got was that I felt very tired for two days after the infusion and I lost my hair!!
Ladies if something doesn't seem to be working for you or you suspect something is not right talk to your doc. If that person won't address your concerns find someone else to listen to you. Docs, chemo nurses and other medical professionals are not perfect. They are human beings doing the best they can under difficult circumstances. Sometimes they make mistakes or don't pay attention to detailsas well as they should. Nobody is perfect.

[Paris]

Thank you for posting this Elaine as I went through something similar. You HAVE to be your own advocate. You can't expect your onc. to know everything and unfortunately mistakes can happen. If you don't get the answers you are seeking from your doctors or they make you feel stupid or like a hypochondriac then you owe it to yourself and your health to get a new doctor. It's not an easy thing to do but your life may very well depend on it. Besides, this is a customer service industry and we are the customer so no need to put up with bad service!

[ElaineM]

You are absolutely right that we have to be our own best advocate and do whatever we need to do when things don't go very well even if that means stepping on a few medical toes.