Greetings! I had two surgeries in April. Part of tongue removed plus neck dissection with 16 lymph nodes removed. Chemo and 33 radiation treatments in June and July. I am on a feeding tube and have not eaten much via mouth for five months. Lost 60 pounds. I am three months out of treatment. Not much taste or smell. And absolutely zero appetitive for the last five months.

Doctors and others keep telling me it will get better but not much has changed in the past three months. How long does it take to get some measurable improvement ?

My throat is constricted by fluid. This makes it difficult to swallow. I am told this is lymphedema. I have been getting PT to improve lymph drainage for two months. What should I expect here? How long might it take to get some of the fluid redirected?

Comments from your experience are welcome. Thanks

Welcome to OCF! You arent alone with this.

Your doctors are correct, in time this will get easier. Recovering from treatments can be a long uphill battle. At least with you being 3 months post rads, the worst of it really is behind you. What you described sounds completely normal. Your body has been thru the war and it takes 2 years before you are fully healed. I know you dont have an appetite but you MUST push yourself to take in at least 2500 calories and 48-64 oz of water every single day. This is what will help you to recover. Ask your doc about adding high protein whey powder to your diet to help speed healing. Your intake is within your control. Even without an appetite, you must push yourself to take in enough calories. If you are able to take in more, like 3000 or even 3500 calories daily that can only help you in your recovery. You wrote you lost 60 pounds during treatment, that means you did not take in enough calories. If you can turn this around now it will greatly help you to have an easier recovery.

When you dont use your swallowing muscles, they can quickly forget how to function. This can cause aspiration which can create major problems for your lungs. If you havent already done a barium swallow test, ask your doc about getting one. This will ensure you can physically handle eating and drinking. If you can safely eat and drink, continue to at the least take small sips of water thru out the day (every single day).

Best wishes with your continued improvements

Hi Christine:
Thanks for your message. I get 2500 calories a day via feeding tube. I eat a little via mouth. I am starting to make smoothies with fruits and vegetables.

Are you suggesting that I should stop using feeding tube and force myself to get 3000 calories a day via mouth?

Best wishes.

Not at all! If you are already taking in 2500 calories daily then you are doing very well with your tube feedings. As long as you can swallow safely then its fine to drink your calories. Its not easy to eat when everything tastes bad and there is no appetite.

I would advise you to add high protein whey powder to your diet. Check with your doc to make sure its ok first.

The recovery phase can be a very long one. Its full of very slow advances with ups and downs and a few set backs too. The very best thing you can do is focus on your intake. I was under the impression you couldnt eat by mouth so I had suggested a barium swallow test to ensure foods and liquids are going where they should.

I was told for every week of rads, it takes one month of recovery. Most patients are doing much better after 3-6 months post rads, for others its much longer like one year until they begin to feel better. Only a few lucky patients go thru treatments with barely any side effects while others struggle right from the start. Like treatments, recovery times will also vary from patient to patient. For most, the sense of taste will slowly return around 3-6 months post rads with small improvements being noticed as far out as the 2 year post rads mark. Most patients also suffer from extreme dry mouth where they need to carry a water bottle with them everywhere they go. This too will very slowly improve. Recovery can never happen quickly enough for any patient.

Here is a list of foods that work best for those patients who are relearning how to eat. One of my first foods was canned peaches, the thick syrup helps them to slide right down. For me, everything tasted like it was overspiced and very salty, even low sodium foods were horrible.

List of Easy to Eat Foods