I asked several oncologists about the K-ras gene testing for HNSCC, like it's done for colon cancer, and was told it's not done, and doesn't apply. I only read about the 5 percent factor here before I started Erbitux, which was interesting, and was sort of happy when the oncologist wanted do small dose Taxotere in addition. I can't get most other chemos due my kidney disease, underlying medical conditions, and bad chemo reaction to Taxotere, Cisplatin, 5-FU in '09, so I settled to do Erbitux for recurrent metatastic cancer with prior cisplatin failure.

It's Minoclycline 50mg that's given for the Erbititux Rash. Two Tylenol, and Benydryl infusion are given before the Erbitux. I used Cetaphol liquid moisturizer cleansor to shower, and Cetaphol moisturizing cream.

Whoever said it before on this forum- there sure seems to be a bunch of people on here who think they are medical experts. I don't find non medical people giving expert medical opinions on the latest "evidence" and cancer protocols very helpful. Yes you all have experience with the disease- but I don't see anyone with medical degrees or oncology fellowships advising on here so I think I will look for support elsewhere... I would recommend whoever is overseeing this forum to provide more oversight on people providing medical opinions.

Lady1 I'm sorry you feel that way. No one here will tell you they know best. We're sharing information that was shared with us usually by a dr. Or through independant research. People here are basically sharing their experiences and what they have read in terms of information. Some of the members here have had good experiences with Erbitux. Others have had recurrences. As a former medical professional I can say even the drs. don't know. After 11 years in school, training to be a specialist, most drs can give you a well educated guess at best, and base their expected outcomes on experience, but no dr can tell a person for sure what can and will happen when choosing one drug over another. We are all individuals with different biologies, medical histories, environments, and challenges. This is why a perfectly healthy stage one cancer patient may go on to face several recurrences and ultimately pass, when a stage IV will get through it and live another 40 years despite having the same dr., and treatment. People here just want to educate, and share information so that when you are facing a decision you don't step blindly into it.
For me Erbitux wasn't an option. Initially, they had considered me for the clinical trial, however my RO and MO decided against it because I'd had extracapular extension in the one node I had involved. To them sticking with the tried and true (in this case cisplatin) was my best shot at beating this. To me that says - they didn't want to risk my life on an unknown. Clinical trials are important to the advancement of medicine absolutely but in this case with all the mixed reviews I would err on the side of caution and ask for a combo of cisplatin, and Erbitux if Erbitux were offered. (let's hope I never find myself in that position again, to make that choice) hugs.

Lady,

Wow it's amazing how in such a short period of time on this site that you have dissected our sinister plan to uneducate the poor souls that come here seeking support, comfort and knowledge!

Nobody ever posts that they are experts or cancer docs, we merely try and use our experience to help those that have not been through what we already have. Some of us spend hours each day trying to help oral cancer patients so IMO your comments are WAY out of line.

Should you decide to stay then I would hope that you would refrain from posting further comments until you get to know us better. If you choose not to stay then I wish you and especially your husband luck on finding another site that is even 10% as good as this site in doing what we do.

lady1

OCF forum is a package deal. You get all the emotional support from the caregiver community but you also get opinions. It's no problem if you chose not to listen to them. Most all of us rely upon our doctors' opinions, it's just that with 8.000 plus members, the difference between "expert" doctors on oral cancer protocols becomes crystal clear in a way that an individual does not get to see otherwise.
Your apparent faith in a medical degree or oncology fellowship as a badge of correct information is rather quaint IMO. I will bet you have never been a juror in a medical malpractice case. You don't know how much I wish the doctors would all agree on how to treat oral cancer and what to do. Sadly they don't.
We have spirited discussions here on those difference of medical opinions about the PEG, Erbitux, re-irridation, TSH tests and many many posters find these opinions very helpful in framing questions to their doctors. I'm sorry you don't
Still, I hope your husband pulls through fine.
Best wishes
Charm

Lady one has been removed at her request form the OCF forum data base

All I can say is Wow....

I really feel for her husband.

I do hope her husband makes it OK. In all the time (6+ years) I've been around here, I've never seen anyone react the way this lady did. She must be really stressed over what's happening with her husband.