Biafine, a prescripton cream, did wonders on my burnt neck and is also supposed to help pevent radiation burn. I wasn't given it until the end so cannot attest to that. Aquaphor did nothing for me.

Take care,
Eileen

My medical team at the CCC said I had the very worst radiation treatment burns they have ever seen - in part because of synergy with the Erbitux. I really hope that the standard ointments work but all of them(aquaphor, radgel, burt's) gave out on me midway thru treatment. The radiation nurse recommended Vigilon which is a hydrogel dressing. (buy it from any medical supply store). They felt soooo good.
Techie info: Hydrogel dressings are cross-linked polymer gels that provide and maintain a moist wound environment. By increasing moisture content, hydrogels have the ability to help cleans and debride necrotic tissue. Hydrogels are non-adherent and can be removed without trauma to the wound. Additionally, hydrogel dressing have a soothing effect that promotes patient acceptance.
Bottom line is to monitor radiation skin damage closely and focus your medical team on helping to heal it.

Hi, I would like more personal responses about what anti nausea meds worked the best. Emend has been mentioned and I did some research on this drug. It's used for prevention of nausea the day of treatment and two days after. David, I know you recommend this drug, but did you need to take anything after the chemo treatments? I'm obsessed that we do everything possible to prevent this awful reaction to the chemo. Compazine doesn't agree with Richard. The zofran every eight hours and ativan at night seems to be working. Any feedback about this topic would be appreciated. We're working really hard to keep his weight on because we know it will only get worse. Thanks, Geri

Geri,

Emends worked on my first chemo and I didn't need anything else. By the time I got my 2nd chemo Emends barely worked and they gave me a few different ones to take and I barely made it without nausea. By the time of my 3rd bag I was pretty nauseated and nothing was working pill wise so I really became nauseated and nothing made a difference. To me the nausea was the worst part of my entire Tx. It was only when I decided that taking no meds was better than all the side effects of the meds that I began to be able to keep food and water down and improvement followed.

As far as lotions and creams the Aquaphor took the sting out for the first couple of weeks, but close to the end nothing seemed to make it feel better. I was given the prescription Biafine and instructions to do Domebroro soaks, but my neck was weeping badly. Has your radiation team recommended anything? They should also be able to supply you with samples until you find something that works the best. Don't be afraid to ask, the suppliers give them tons of their products to hand out to patients.

I can not help with the anti nausea drugs. I was so very sick all through my Chemo that it did not matter what I took. If I could stay asleep I did not get sick, but then I also dehydrated. I spent almost the entire time I was on chemo in the ER or admitted to a room.

Patty

I have a question about something the RO brought up. She said that if you lose to much weight the mask won't fit tightly enough. By what I've read it seems that everyone loses weight and some people extreme amounts. Don't they have a mechanism for tightening the mask down more? They must be able to adjust it somehow. That took me by surprise because Richard lost a few pounds from being so sick. He's eating a lot more and feeling better. Thank goodness he put on some extra weight before starting treatment.
When they weighed him at the first radiation consultation, he had heavy hiking boots on, a huge set of keys, wallet, cell phone, etc. Typical man! It's just the opposite for women. We take as much off as possible before being weighed. So they are going on the heaviest weight. When they weighed him on Thursday, he had none of that stuff in his pockets and had been sick, so was down a few pounds. I'm just so paranoid about the least little thing and I'm so thankful that one week has already passed. Thanks for any feedback. Geri

Well, Geri I know that the purpose of the mask is to hold your head very still and in the same position for each treatment, so maybe if you lost a lot of weight you would be able to move around inside of it and risk not getting the treatment to the exact spot that they wanted it o go to.

Just what I think -

Patty

Geri

Good news, bad news; Bad news first, On anti nausea drugs, my experience was similar to David's. IMHO: Zofran, comprazine, promethazine and prochlorperazine were more trouble than they were worth and I ended up with three quarters of each bottle left over. I hope your experience is better.
Good news: At my worst in radiation I weighed 131 lbs and I weighed in at 177 lbs. I'm average height - 5' 11" and did not get any shorter That means percentage wise I lost one quarter of my body weight, yet my mask fit as snugly on the 40th radiation as it did on the first. Out of all the concerns my medical team raised over my weight loss - my mask not fitting tight enough never came up. I drank water constantly and never got dehyrdated but I did do like your husband only in reverse. In the last couple weeks I resorted to wearing a vest with fishing weights in the pocket and my heaviest Telson Danner SWAT boots, along with a blackberry and a biker wallet with massive chain and keys just to keep it near 140 so they wouldn't panic. I don't see many TV informercials about "fat faces" or new machines to "lose inches in those face cheeks". Most fat in on the waist, thighs, abdomen, buttocks, etc and would not affect a face mask. That said, maybe his RO needs some more practice on making masks if that is a constant issue with her patients. I would suggest getting a valid starting weight "do over" or else continue to wear the boots, etc.

good point Patty but they bolt you down so you can't move. The mask is almost suffocatingly tight anyway if made properly. But if this is something to worry about, somebody on this board will chime in. Again, sounds like a manufacturer's defect to me.

I used Aquaphor and Biafine for the burn and Zofran for nausea. By the end, I had a pretty bad burn, but the Aquaphor seemed to do a good job keeping it from hurting.

I tended to use the Biafine during the day and the(greasy)Aquaphor at night. The CCC gave me the biafine.