Might anyone know if/where the OCF folder is for a list of prescribed agents? Beyond Cisplatin I would very much like to know the potential side effects of likely suspects that will be discussed next week at my Dad's planning session in order to be as in front of it as possible. TIA.

Unsure if such a list exists here. It seems to me the list of potentially prescribed agents (as you put it) is tremendous, and there are very good online resources for potential side effects for all medications now. Unfortunately, for each drug, the list of *potential* side effects is often HUGE and it's impossible to tell what any given person may experience.

While it is very wise of you to try to be prepared and informed in this regard, I will suggest from my own experience that you cannot predict what will happen for a given person, and cannot meaningfully avoid......bad things......?

I, for one, had bad mental reactions to something.......but what was it? Cisplatin? Fentanyl (pain patch, related to morphine)? Any of another multitude of anti-nausea medications? The steroids? The physical beating? Losing 20 lbs over a few weeks? Some combination of all of those, combined with my own mental quirks and personality? I have no idea, really. I experienced what they ultimately called a form of steroid-induced psychosis, or neurosis, in which I had an absolutely terrible "waking dream" in which I died.....but then I didn't.....and then I believed that my mind had died but my body had not taken the hint.

Things went downhill from there for a while.

I *can* say that I survived it (barely), and am doing very well now, one year and a bit from the climax (nadir?) of my treatment for tonsillar SCC. But, a large percentage of the last year royally sucked, to put it gently.

Feel free to PM me if you'd like. I went through my treatment in Vancouver Canada but am now living in London, England, for wholly unrelated reasons.

-Seth

There are not too many that are first line head and neck chemo drugs, so you will not have lots of options. Cisplatin is the big gun and most used. It does have some side effects you have to watch for. I'll let others here tell you about the potential for hearing loss in some patients. You need to let the docs know if you develop ringing in your ears after the first go with it (tinnitus). Paclitaxel (Taxol) is one of the fall back drugs for people that develop this side effect with cisplatin. The other main drug is Carboplatin. All of these drugs are based on the same method of action. There have been some multiple drug cocktails used in various institutions with varying degrees of results. 5FU is often added to the cocktail ideas. Bottom line for me would be to go with the drug that has the longest history of efficacy when used with radiation in H&N, and that would be Cisplatin. But this is a very individual choice between you and your doctors.

I see that I may have misinterpreted the question. While there are relatively few main anti-cancer drugs, in my experience I was quite overwhelmed by the very large number of different drugs I was offered to help deal with the various side effects of treatment. These were for pain, inflammation, nausea, skin burn etc., and included a gradual increase in potency (and side effects) from T3 through liquid morphine to Fentanyl (patch), the steroids, and anti-nausea medicines.

Each of these has potential side effects, and when you start to combine them, I think it's very difficult to know what's causing what. Some people sail through. Some don't. I sailed through 80% of my treatment, and then went very sideways.

Also, be aware of the potential for late-onset side effects. I didn't have any trouble with the Cisplatin initially (meaning no nerve damage, but the stuff *is* poison, basically) and was "signed off" by my medical Oncologist, but months later had some significant concerns about my hearing and "numb feet", both signs of peripheral neuropathy, or nerve damage likely caused by the Cisplatin, and I was not told this was possible. This has, however, gradually healed and I'm for the most part not concerned now. If it happens with your father, take heart that it will probably resolve in time. Any sign of hearing loss or ringing in the ears needs to be immediately discussed with the medical onclogist before any other doses are given. This will not resolve itself, it is permanent.

Good luck, and stay strong.

thanks you guys. it'll be either cisplatin or Erbitux and i've been doing the research. pretty down to earth oncologist who we actually can talk with, he's leaning towards cisplatin. my dad tolerated this real well years back for melanoma but they'll be dosing bucketfuls this time around.

another question? i'm reading Erbitux is/isn't picked up by medicare, what's the deal on this, how do you navigate insurance before hand? i want to jump on this before it lands in my mom's lap.