Angel,

For the skin I have two scripts that are Betamethasone Valerate, one is cream based for the skin and the other is ointment based for around the mouth and lips. They work wonders. I also have scripts Pilocarpine to help the salivary glands working, a swish and spit, a swish and swallow and finally fluoride trays. I use everything the RO gave me. NO pain meds...I could have used them twice but did not acquire to ask for them. Over the counter I use carnation VHC, ensure, boost, boost energy fruit drink, Juven for amino acids, gatorade and benefiber; although, I am off solids and doing all liquids. Before my rad txs I bulked up and gained about 7 or so pounds...so far I lost 10 pounds or so. They say I'm doing well and if I can keep it around two pounds per week I'll be okay. I try to shoot for 3000 calories per day but honestly I peter out around 2000. Sometimes I get more in sometimes I don't. I drink a lot of fluids, over 60 ounces a day. I slowed down on the water and do a lot of supplement drinks. Water has no calories...so I try to get what I can in whatever liquid there is available. I've been able to drive every day but take someone with me just in case...Every time I see the RO someone is there with me...Two or three set of ears are better then just yours.

If or when you enter the liquid stage and you don't have a PEG then...VHC is a Godsend. It's thick like pancake mix but has 560 calories per 8 oz...nothing out there like it. I also need extra extra extra time in the bathroom in the morning just for phlegm. The first thing I do when I wake up is get a cup of coffee and a carnation VHC...every day. It's hard work and it hurts at times but soooo many others have done it and so will you. You'll be fine, one day at a time. And for every little thing come here and ask...even if it's just for a pick-me-up...we all need those. You will be fine.

best wishes


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better