ERBITUX - HELP anyone ? new on this board

Clearblue Member Posts: 186
edited March 2014 in Colorectal Cancer #1
Hello everyone, im new here

MY wife had hyperpharingial squamus cc and was operated twice + others(see profile)(which is ). She has a condition called Fanconi Anemia, which predisposes her to malignanat tumors
(head and Neck- usually where all this starts)

F.A. patients have hypersensitivity to Chemo Therapy , which can be lethal and RT is generally considered equally bad.
So she has fought her way out of hospital every time and carries an accumalation of recovery discomforts adn quality of life compromise. She is a warrior and one of a handful of adult FA survivors around.

Because of this she has been given Eerbitux only and she is on her thirteenth week.
(Most on this site have been given a cocktail or combination of CHemo + Erbitux or RT and erbitux, so sometimes i dont know what effects come from what).
The effects for my wie have been very difficult - all the achne form rash effects etc. from scalp-face-chest- arms- and painful cracks and swelling on toes(which makes it difficult to walk sometimes).

Her last PET, was neg, and the Onco recommended continuation of erbitux for another 7 months!
But, her cant really justify to us why for this period of time!! I might be wrong, but my understanding is that noone really knows how long to treat with erbitux and what the effect of stopping its use for a period of time is .

She has gone through a "fortune" of suffering over time and though the docs underplay the Erbitux efects (which is really annoying!), my wife has daily burney face, arms and overall sensitivity sensations from it. It drives her nuts and she has decided to stop the erbitux as she feels her quality of life has been severely debilitated.

To this day we havent found a cream to deal adequaltely with the dryness and i do need to say that she has decided against taking antibiotics as seh doesnt have infection present.

Im sure that with all the aesthetic difficuties of skin effects, if she were to be without the constant burning she might consider continuing. So the next PET in about two months will be critical.

If anyone has anything to say, plse go ahead.

Heartfelt Sincerity