I can second Nelie's comment about Bag Balm. I have used that for years and years. I get it at the feed store, but have seen it in some pharmacies. Softens and heals, and doesn't cost very much.

Amy,
I looked at the bottle to find a web address and found that it's really Zim's Crack Creme. I get it at Walgreen's. It's on the shelves with the hand lotions--the ones for people It's my "miracle cure" to take the sting out ouf paper cuts and I use on on my cracked heels too.
A&D ointment is my other favorite for dry skin. We'll be trying it, too.

Here's the web site http://www.crackcreme.com

Also, one of the oncology nurses recommended using Johnson & Johnson Advanced Healing Band-Aids. We got some today and Tom put one on to test it.

I found amusing and interesting threads about Erbitux on the American Cancer Society's colorectal cancer forum (Erbitux was first approved for treating that cancer). www.acscsn.org/Forum (I think you have to register to see their forums). That's where I saw it called Erbi-rash.

I don't think we've gotten any insight about Erbitux's role in the whole scheme of treatment. Tom's MO is now thinking he might just give 9 doses of it instead of the 10 he planned but I don't know how he's arrived at that decision. Perhaps I need to go to the next consultation and ask that question.

I'm sure you did homework to learn about Erbitux, but for those who might not be as familiar here are links to info on how it works and how it came to be approved for head & neck cancer treatment.
http://www.fda.gov/CDER/DRUG/infopage/Erbitux/erbituxQA.htm
http://www.bms.com/news/press/data/fg_press_release_6232.html
http://www.cancer.org/docroot/NWS/c...w_Approved_for_Head_and_Neck_Cancers.asp

Joyce

Joyce, I'm off tomorrow to looks for Zim's Crack Creme. Thanks. I read Tom's last update and hope the hearing problems clear up.[and the nausea] I'm really glad he has a peg.Thanks for posting the websites above. I had read some of it before we started "Erb". It will be good info for others. Amy

Hi Amy,
I just read your reply to my post from August. Johnny(my husbad) had a peg tube inserted for nutrition on 9-1. He has his last radiation treatment this coming Tuesday and we will know Wednesday if he will receive any further Erbitux treatments. The only reaction he seems to have had from the Erbitux is a rash. He was prescribed Xclair cream for the radiation burns and it helps this rash as well. He his is still having a lot of pain from the sores in his throat, they have started to bleed and he is not sleeping well. The doctor started with liquid Viocodin and he is now taking Oxy codone still little relief from the pain. With the treatments ending next week, does anyone have any advise on speeding up the healing process? Also, will we know right away if all of the cancer is gone?
Thanks for any suggestions

Johnny should be getting better pain relief, which is a patient's RIGHT -- unfortunately our MO at Hopkins says many docs are reluctant to prescribe adequate pain relief as they fear legal entanglements or patient addiction.

Most everyone who goes through radiation needs serious pain relief. This may take the form of Oxycontin (timed-release oxycodone which is equivalent to 10 or 20 oxycodone pills) but most eventually go onto Duragesic (fentanyl) patches. These are a timed-release dose which lasts 72 hours. My husband was able to get through with 25 mcg Duragesic but it is not unusual to have to use 50 or even 100 mcg. The patient is eventually weaned off this medication as the healing progresses, most have no problem. Some people also use a milder oral opiate (e.g. oxycodone or liquid morphine) for break-through pain, or to allow (relatively) pain-free eating. There are also rinses which help dull oral pain, does your husband have these? One is Gel-clair (prescription) which is also available over-the-counter in a weaker formulation as Rincinol, made by GUM.

You MUST be your husband's advocate in this -- INSIST that he get adequate pain relief. BE aggressive, do not take "no" for an answer. Go to your hospital's patient advocate if you get no satisfaction. Constant severe pain slows healing and can lead to other physical and emotional problems.

When real pain exists, it is rare for a patient to become addicted to the opiate drugs.

Gail Mac

Gail is right. It's time for Johnny to be on a duragesic patch. Tom started his just before radiation ended. He started on 25 mcg Fentanyl and they stepped him up, 25 at a time, til he got adequate relief. He's on 125 mcg now (he's a big guy), three weeks after radiation and Erbitux ended. He's still using liquid Oxycodone for breakthrough pain a few times a day as well.

If you do a search here on Fentanyl(search is up top, under the "post a reply" button) you'll get a lot of information about it. It's a very powerful drug so there are a lot of do's and don't's but it's very effective for a lot of patients.

Although everyone is different, the last week of radiation and the week after were rough with the burns in the throat. Tom had a lot of discharge from his and got a lot of relief by using a suction machine rather than spitting because spitting hurt so much.

Speak up to the doctors about the pain and the discharge from his throat. If your docs don't treat a lot of oral cancers, they aren't as familiar with the progression of these things and don't always act pro-actively.

Hang in there, it DOES get better!
Joyce

Oh my yes! The last week of rad and the two or three weeks following are when the pain is at its worst. Nothing less then Fentanyl patches should be accepted. Ask for them specifically. The docs told me they had never seen worse burns than I had, but with the Fentanyl, I was completely comfortable. I love that stuff, but had no trouble leaving it behind when I was better. It is important to follow the directions to the letter, but the relief provided is just wonderful!

I got through radiation with liquid vicodin and lots of naps. I probably could have used something else at the end, but I don't recall being in tons of pain. I do know that if I HAD been in more pain, I would have hollered until my docs heard me. Tell them he's not comfortable. He won't be totally comfortable for quite awhile, but there is no reason for him to have this much pain.

Thank you all. I will call his doctor tomorrow morning and request this.

JM, we might well be the only people on this forum that have had a questionable reaction to the patch, but just to be cautious, watch Johnny carefully for a while after he gets on it. It made John loopy and he was on a low dose. You are right to persist until his pain is under control. Amy