Wednesday, February 20, 2013

Side Effects and Drug Information

When faced with "choosing" new drugs, sometimes the fear of side effects can be overwhelming.  In addition, once you've started a new drug, sometimes it is difficult to determine what is a side effect of the drug and what is caused by something else.

I am preparing to figure out what new chemotherapy to start...and I must admit, I hate the fact that I have to do this.  It seems sort of wrong that the common thing today is to have the oncologist give you a selection of the drugs pick your own poison.  I don't mean to be negative, but it is strange.  I understand that it IS a good thing for the patient to have input as well as to feel like they are a partner in the treatment.  However, it is scary that we, who have no idea what it is going to be like, or how to interpret the cancers we have in order to choose the best thing, have to pick one.  Sometimes I feel rather much like Alice in Wonderland when she is presented with the vials and is told to pick one.

I would like it if somehow we were able to test the drugs against our particular cancers and choose from there....and in fact, in other countries (as well as here) there are ways of doing assays to rule out drugs which are likely not to work.  However, as I have noted before, that won't work for me as I have bone mets and no way of taking a live sample at present.  In addition, I don't have the money right now as this isn't covered by insurance.

Sometimes when you read the possible side effects you are more frightened than ever before.  The list of possibilities is daunting.  Downright terrifying.  However, all of the chemo-therapies have pretty prodigious side effects.  It is easy to think that you are going to have ALL of them, or you are going to have the most serious.  Usually, the patient information only lists the most common side effects. Instead of looking at that, I usually go to the paper inserts which are in the boxes called "highlights of prescribing information." This is exhaustive and truth be told, I sit and read it at the computer as much of it is written in medical jargon.  For instance, I learned that "epistaxis" means nosebleeds.

One of the best things about the inserts is that there is usually as section which lists ALL the adverse reactions, with the percentage of people in the study which reported them and listed against those who received a placebo in the trial.  Many side effects are rarer....for instance some of the side effects I had from Xeloda were only reported in 8% of the patients who were in the trial.  That didn't mean that it made me any less happy to HAVE those side effects, but it is worthwhile to note that for most, this side effect wasn't likely to happen.

These sheets are difficult to read.....but I think they are worthwhile.  It might be useful for you to read them and highlight areas to talk with your oncologist about so that you can understand them.  If  you don't have a sheet included with your drugs, or want to find the sheet for something you are contemplating taking, search on the name of the drug and "prescribing information" ,  for instance "Xeloda Prescribing information."  check out the most likely, looking for the link.  For Xeloda, I found this:

Down at the bottom of the page is a hot link in bright blue which says  "Please see complete Prescribing Information" with the "prescribing information" being in a bright blue hotlink.  If  you click on that, you are taken to a Genentech download site which will give you a PDF to read.  Take a look...and have a dictionary handy.


  1. Good information and advice, Lisa.

    Thinking about you!
    Kathleen from Health Monitor

    1. Thanks, Kathleen. It has been a very busy month and end of month last year....:) Sorry it took me so long to acknowledge your comment.