Jul 13, 2006 - 12:36 pm
I don't swallow because of a constricted esophagus as a result of radiation for squamous cell carcinoma of the head and neck with an unknown primary (means I had a lump on my neck, but the source of the cancer was never found). Consequently I was treated with the largest amount of radiation allowed.
I was 49 at time of cancer and am now 58 (male). I've had a peg tube now for 9 years. I do fairly well on it. I take 9 cans of Jevity 1 Cal along with a fibre formula I discovered at a health store. I do, however, take prevacid to prevent heartburn or acid reflux. I never took an antacid before in my life before I started on the commercial adult nutrition cans.
My problem is this. Before I had my head and neck squamous cell carcinoma I weighed 172 pounds. Now I weigh 149 pounds. My strength has diminsished and I keep getting forearm pulls, biceps pulls and tendonitis in the upper part of both of my arms as well as rubbery legs.
Nutritionists seem to just want to put me on another formula (although I haven't talked to one in about a year and a half).
What I'm looking for is a formula by which I can put real food down my peg tube. Does anyone know of such a formula instead of these soy protein cans with all kinds of vitamins and minerals. I would consider a commercial product that uses mostly real food or a home made concoction. However the commercial formula would probably be covered by insurance and the home made wouldn't. I'm on limited income.
Also I can offer advice to anyone interested on dry mouth, mouth mucous, peg tube maintenance, stoma irritation, ear wax build-up.