erbitux as maintenance??? Phil???others?

serrana · July 2010

After three surgeries for lung mets my onc is talking about erbitux for "maintenance" since I am KRAS and BRAF wild type ( love that term?)
What side effects have you had w/ erbitux only, what about erbitux/irinotecan? I don't think my poor intestines can handle much more stress. Xeloda and 5 FU and Oxy and Avastin ( not all at once) resulted in lactose, fat, gluten intolerance and IBS. Yuk.I was dx in 1/07.

However I am not ready to throw in the towel so wonder what I am signing up for w/ Erbitux etc??
Phil, you are my hero for survival........what do you think?Any one else?
Serrana

PhillieG · July 2010

Hi Serrana
I'm not on the site every day so I missed this post.

I've been on Erbitux for 3-4 years now with very good results. "If it's so good why am I still on it?" you may ask....Because it's still working at keeping the tumors from growing a lot that's why. It has not gotten rid of everything (yet) and it may or may not do that. Those really are questions that I do not ask. Erbitux, like many other treatments, are usually only effective for a certain amount of time. That varies from person to person and since my oncologist is not a fortune teller, I do not ask her. It works until it no longer works. I have been on Erbitux only and also Erbitux/Irinotecan. With Erbitux you can expect the rash on the face and torso. I've heard conflicting stories about the rash. I've heard that if you get the rash it means that the drug is working, I've also heard that it is bunk. It still works. So the rash (for me) started out pretty severe on my face. I found that I was more self conscious about it than the reactions that I got from people that I would meet in stores, etc. It's not pretty but it comes with the turf. I also had issues with fingertips getting what look like paper cuts on them after time. That was a drag since I like to play guitar. They mostly were on my right hand, I think the callouses prevented them from going on my left hand. I would sometimes get sores by my toenails too that had to be addressed by a dermatologist. The Irinotecan caused stomach cramps in me and some nausea too. The usual crap. I'd feel crappy for 3-4 days after treatment usually. The good thing with the treatment has been that when I stop for a break or whatever, the rash and all other side effects go away rather quickly.

My treatment schedule has been getting a double dose of Erbitux and a single of Irinotecan every other week so I'll feel crappy for maybe 5 days, then be fine the rest.

I hope this helps Serrana.
Again, sorry it took so long to get back to you
-phil

Clearblue · July 2010

PhillieG said:
Hi Serrana
I'm not on the site every day so I missed this post.

I've been on Erbitux for 3-4 years now with very good results. "If it's so good why am I still on it?" you may ask....Because it's still working at keeping the tumors from growing a lot that's why. It has not gotten rid of everything (yet) and it may or may not do that. Those really are questions that I do not ask. Erbitux, like many other treatments, are usually only effective for a certain amount of time. That varies from person to person and since my oncologist is not a fortune teller, I do not ask her. It works until it no longer works. I have been on Erbitux only and also Erbitux/Irinotecan. With Erbitux you can expect the rash on the face and torso. I've heard conflicting stories about the rash. I've heard that if you get the rash it means that the drug is working, I've also heard that it is bunk. It still works. So the rash (for me) started out pretty severe on my face. I found that I was more self conscious about it than the reactions that I got from people that I would meet in stores, etc. It's not pretty but it comes with the turf. I also had issues with fingertips getting what look like paper cuts on them after time. That was a drag since I like to play guitar. They mostly were on my right hand, I think the callouses prevented them from going on my left hand. I would sometimes get sores by my toenails too that had to be addressed by a dermatologist. The Irinotecan caused stomach cramps in me and some nausea too. The usual crap. I'd feel crappy for 3-4 days after treatment usually. The good thing with the treatment has been that when I stop for a break or whatever, the rash and all other side effects go away rather quickly.

My treatment schedule has been getting a double dose of Erbitux and a single of Irinotecan every other week so I'll feel crappy for maybe 5 days, then be fine the rest.

I hope this helps Serrana.
Again, sorry it took so long to get back to you
-phil

phili WOAA !!
Woaa, im new here, i just copied my earlier post. Have u been on this for three years straight? Im abou tto show this to my wife , but i think she gonna faint just hearing this. Anyway:

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
Clear.

PhillieG · July 2010

Clearblue said:
phili WOAA !!
Woaa, im new here, i just copied my earlier post. Have u been on this for three years straight? Im abou tto show this to my wife , but i think she gonna faint just hearing this. Anyway:

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
Clear.

Clear
I sent you an email.
-p

erbitux as maintenance??? Phil???others?

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