Welcome to OCF.

My suggestion is to RUN to a top notch cancer center. There they will get together as a team and discuss her case. There will be all the specialists that she needs treating her and they will all be on the same page. You do not need your daughter to be treated by an inexperienced team. Also its a good idea to go for a second opinion. Do not let distance choose your daughters fate.

I am so sorry to read about everything she has been thru. If a patient does not keep swallowing thru out radiation treatments they can lose their ability to swallow very quickly. The muscles 'forget'. She needs a dietitian to help evaluate her. She could very easily aspirate if she isnt careful.

As far as weight goes, she should be getting a minimum of 2500 calories daily and 48 oz of water. This is a minimum, if she skimps one day and thinks she will make it up the next, it happen. This isnt something that can be played around with. Since she has a feeding tube check with a dietitian or nutritionist about getting a more calorie dense formula. You can even buy Carnation Very High Calorie liquid nutrition which has 520 calories per can. Add 2 cans to what she is already taking in, its thick so add a can of water to ever can of Carnation VHC. You can purchase this thru the green box (the OCF Amazon link) on the main forum pages. This will help OCF by giving a small kickback for every purchase. Please use this link for all your Amazon purchases as OCF is a very small and poor non-profit that can use all the help it can get.

Please ask questions, we will help you get your daughter help.

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