Looking for long term users- Erbitux

Clearblue
Clearblue Member Posts: 186
edited March 2014 in Head and Neck Cancer #1
Im still trying to do the best i can for my wife(see my users profile)

ANYONE used erbitux over a long period of time?

She had recurrence within 2 months but now latest PET CT after 9 weeks of Erbitux , no visible pathalogy sign of tumor, nor microscopic, except small nodule on lung, which they believe insignificant. So it is good news really.

The Oncologist claims the Erbitux must be working, but he hasnt got the foggiest clue as to how long she should be on it; for life if possible.

The "problem" is, that there is no let up re rash and radical burney face. Achne form etc. She's dried up as all hell and starting to crack up on heels, toes etc etc.
He's pushing for her to go another 7 months.
For her , she says living to see the calender move on, but without much quality is not called living.

It seems that there are no answers to our questions:
- how long can a person stop the erbitux and then restart, if at all?
- how we deal with such fierce reaction?

We have a closet of creams unused or ineffective She has challenged me to sleep covered in oil so that ill wake up tomorrow and finally shut up about what she should be trying.

She's carrying 2 years of 4 surgeries and is dealing with the discomforts of repair, yet alone the erbitux.

I just havent been able to find someone that has done the long haul with erbitux, nor someone who recieved erbitux only.


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Comments

  • blonde1
    blonde1 Member Posts: 8
    #2
    Erbitux
    Just finsihed Erbitux and Radiation, lasted seems like forever !
    Effects were terrible, but .....................It has now been almost 3 months since I finished it all, skin is back to normal, you truly cannot tell that I looked like a burn victum !! Yep, I was a mess. All the things you mentioned were there.
    The good news.............YOU WILL HEAL AND YOUR SKIN WILL BE GREAT AGAIN !!
    All the creams we had did no good, it is just a process.
    Bad news is now I am dealing with a lymph node that showed up in the Pet Scan that the Radiation did not kill, it is a reoccurance, now surgery again on the opposite side of my neck. Hang in there and know, you are not alone and this too shall pass...

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