Claudia

How could you possible keep everybody here straight? Unfortunately there are over 6000 members of this forum. Take that into consideration along with all the doctors, nurses, medications, appointments, etc you must remember. There isnt anybody who could keep everyone straight.

Hope you are feeling less overwhelmed. I always think of the OCF forum as kinda like a private club, telling private stories. Only the members get it. Others cant understand the ins and outs of cancer unless they have lived it or been a caregiver. Its especially true with oral cancer, its a truly nasty disease. People Ive known who had other types of cancer have been cured or at least gotten well much faster than OC patients. Its a rough road, we all understand each other here. You are doing a great job as a caregiver!!!!

Patty.... I love your line about combing your hair straight up cuz you can, very positive attitude

Hi, Well, we just returned from radiation and the RO wants to add Erbitux to Richard's chemo regime. She mentioned "a couple of shots" and is going to speak to our MO about it. Even though the node is smaller, she thinks it should have shrunk more by now. She also mentioned that it could be scar tissue. I thought everything was going great and then to get this news. Can anyone please give me some feedback about what "a couple of shots" might mean? We were both taken aback a bit because we thought everything was progressing on schedule. Richard is due for his 3rd chemo on the 17th. This whole ordeal is such a roller coaster ride that I'm not going to get my hopes up about anything until we get through this treatment. Thanks ahead of time for any feedback. Geri

Geri

One thing I wish that I had done and did not with Erbitux was to get my biopsy tested for the K-ras gene mutation. Long story short: 65% have normal or "wild-type" K-ras gene but 35% have a mutation that keeps the EFGR response going despite Erbitux. The definite studies are in colon and lung cancer but even Big Pharm is advocating testing now. It is not a blood test but tests the DNA from a paraffin slide. Of course, ask your Doctor but I can't help but think that with the recurrence, maybe I had mutant K-ras as it does not affect the skin rash or side effects, just blocks the Erbitux from working. Or so I have read, please never rely upon me for medical advice but I am great on doctor questions.
Good luck

Just as a quick followup on my original question about the Erbitux rash...H has now had 4 Erbitux treatments and 12 IMRT. Rash is nowhere as bad as it was after the first loading dose. A couple of things I (as an observer) attribute it to - first the antibiotic that he takes twice a day and second, the chemo department suggested a product called aquaphor for the rash - its OTC, its also greasy. Radiation nurses told us not to use that because it's not water soluble and can't be used within 2 hours of RT and to just use the RT stuff - Biafine. Stretching my memory way back to the teenage years....why would you put anything greasy on an acne like rash? Seems it would make it worse and it was. H is doing much better now and rash is there but much, much better.

Cheryl

The literature that I have read about Erbitux indicates that the rash normally gets better after the first couple of weeks. I'm sure that the antibiotics are helping also.

The Aquaphor was a product that my radiation nurse gave me to use on my radiation burns at first. I got some relief from it until the last 3 weeks when I got no relief from anything. Are you sure that they said to put it on the rash? I agree with you that it seems like the opposite of what you would want to put on it. The Biafine is wonderful and really helped to heal my burns quickly. I was quite a bit better about 2 weeks after my treatments ended.

Glad to here that H is doing better and I hope that it is all finished soon.

Patty

I'm convinced the Biafine is a wonder drug. I swear yesterday I was telling people Mike looked like he'd sent his head to the Bahamas for a day of sunburn and left his body behind. Today he's just light pink. We walk to the car and I slather that stuff all over his face and neck - then again at bedtime. He tells me I'm a pain in the posterior but as I tell him, he knew that when he married me We've got about 6 more treatments then go to the twice a day routine for 12 days. I hope this stuff keeps working as well as it has so far....the other stuff is bad enough I hope to at least keep the outside in as good as shape as possible.

[quote=CherylR]..the other stuff is bad enough I hope to at least keep the outside in as good as shape as possible. [/quote]

too funny Cheryl. There is a couple in my church and the husband is being treated for a brain tumor. She tells me that they are going to do another MRI to see if there is anything left in his head and laughs.

The Biafine is wonderful. My insurance is refusing to pay for it so I am currently doing the appeal letter trading with them. I thought that I should attach a photo of my fried, bleeding neck to the next letter so that they can see that it was medically necessary. Jerks!!

Patty

LOL! I think you should send them a picture!! Perfect! I went a round with Mike's insurance for medical pay while he's off work - First they said they didn't get the stuff they needed and closed the claim, then I sent them every scrap of paper I could get from RT and chemo from my office (I work for an attorney), then I called. They said it would take a week for a decision to be made. I told the rep I was talking to it really shouldn't take a rocket scientist to figure out if someone has stage IV cancer they probably can't work and hung up on her. (I'm sure the call was being taped) Three days later we got a call that the claim was approved and check in the mail - these are supposed to be weekly checks and these fools had to send a month's worth in one check. I vote for you to send them the picture!

This remined me of an article I read in the newspaper, in the business section a year or two ago. It was an AP article so some of you may have seen it, also. It was in essence speaking to employers that had employees diagnosed with cancer and what they could expect to happen. They discussed the different lengths of time the employees would be off work depending on what type of cancer they had. Some barely missed any work, most were back at work within three months. It stated if the employee had head and neck cancer, not to expect them back that very, very few were able to return to work after their treatments. I don't think this is neccesarily true anymore, do you? I haven't gone back to work but then I'm old, LOL