Hi Roma

This is so difficult for you to have to make this choice.

Alex and I also had the choice between drug A (not panitumubab but something else in that class) or cisplatin. It does frustrate me that the professionals who are supposed to know what they are doing aren't so good in helping you to weigh up the options. This is their idea of trying to allow the patient to give an informed consent or choice. How the !@*^# can we, the average, shell shocked, overstressed and fearful person possibly be expected to make an informed choice after a half hour discussion with the doctor (if we are lucky) about the pros and cons. Especially since we also didn't think to bring a dictionary to the meeting. Thank goodness for OCF!!!

the OCF members can't make the choice for you either as most of us are not medics nor are we fully aware of the issues of your particular situation that may make our own advice wrong. I will however, share Alex and my personal experience but please remember that Alex is Alex not your husband.

You will see from my signature that we eventually chose cisplatin but will need to wait and see if that was the right decision. Alex is young (51) and very brave when it came to toxicities. He also had cisplatin as part of his chemotherapy regimen prior to the chemo plus radiation (which is the bit you are about to undergo). So we knew that cisplatin had worked on his particular tumour. We basically chose a drug that had been more extensively tested but might have more side effects over something that is probably just as good (but yet to be proven beyond doubt) and might have less side effects. HOWEVER, there were caveats - Alex is young, Alex is brave and Alex had the attitude of "hit me with everything you've got" and the side effects be dammed!

You know what I would do in your situation? Go to the doctor, and say "if this were you (or father, or brother, or best friend - pick a possible person who may be close to your husband's age), what would you choose and why?" and see what comes out. Be persistant though, you may have to ask the question a few times, cos your doc may see this as your attempt to make them make the decision for you and try hard to avoid the question.

Good luck and let us know. And remember, at the end of the day, all the agonising you are doing now is over two choices that the doctors believe in already - otherwise they wouldn't offer them. Once your choice is made, don't look back - you will waste energy needed for other things if you do.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight