This is my first time and I do not know the abbreviations. My daughter was diagnosed with tonsil cancer last year. She is 43. We knew nothing about cancer. None ever before in the family. The ENT was treating for acid reflux, previous to dignosis. A surgeon was never mentioned. He sent her straight to radiation and chemo. She went through chemo and radiation and they said she was okay. Then six weeks later it was back and had attached itself to carotid artery in that short amount of time. Surgery was performed to remove cancer from that area at UAB. Artery was knicked during surgery, resulting in a small stroke. Her diagnosis now is stage IV Non-Hogkins Lymphoma. I just picked up copies of all her medical records today so I can have another ENT now try to determine why she can no longer swallow. I just sound so stupid, but we just trusted what we were told. She has a feeding tube and we just cannot keep her weight up. The Mucous is so heavy. Can anyone give us any other suggestions.

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.

NCI cancer centers

Hi,
You are in a good place here. Everything Christine said is great advice. The cancer centers are really your best bet. The team you will get will not only be there for your daughters care, they will have loads of help and advice for you.
So sorry for all you are going through. We have a 27 year old who had a stroke 3 years ago. I can't imagine that on top of everything else your family is going through.
Please stay in touch with us. We are here to listen and advise where we can with what we have experienced!
You will be in our prayers.
Kathy

Hi there sorry to hear about all you've gone through - Christine is right about the loss of swallowing reflex during radiation, I'm surprised they performed surgery after the rads. Radiation also causes complications with healing... Most tonsil related cancer is HPV+. Often they will remove the tonsil tissue then do radiation and chemo. Has she been scanned? I'm assuming so - she should have another scan to see if it's anywhere else - though this type of cancer usually responds well to radiation, I'm wondering if the stuff by the carotid wasn't there from the outset... Did they radiate her neck? People can be re radiated but it can cause a lot of side effects or worsen the ones she already has. There are head and neck exercises that can be done to try and help stretch the muscles in her mouth and throat.
Christine is right about the nutrition, is she able to do fluids at all if so it may clear sime of the mucous... Also with regards to the mucous - i found a waterpik helped clear out the gunk, i used to add bit of baking soda - alcohol free mouthwash and shoot it aroung my mouth - on the lowest setting. It made me feel fresher. I still use it. Some people here may poo poo this suggestion but I have found acupuncture has helped with the swallowing, there are studies to support this but you should definitely see a therapist to do a swallow study and see why - but first an foremost do go to a ccc if at all possible - also try adding some protein powder to her formula - just make sure it's not clumpy- dilute it if you have to - it will help with healing, and add more calories - take care - I'm sure others here will be along to suggest...

I am so sorry for all you and your daughter have been through. My thoughts and prayers are with you. I pray God guides you in the right direction as far as doctors are concerned. Stay strong.

Bhamry - It's good you've picked up your daughter's medical records so that you can find another ENT. I noticed that you are in Alabama and there is a CCC in Birmingham. Don't know how far that is from where you are, but it really is important to have an ENT that has had experience with oral cancer and a team that can work together with you and your daughter to find the best treatment. I know it is so very hard to see one's child going through something so difficult. When my son was diagnosed with his cancer, I was a basket case and without all the information and compassionate help I found here, I don't know what we would have done. You've taken the first steps in getting something done for your daughter in getting her medical records and in coming here. You've gotten excellent advice above, so keep up the fight and come back here often to let us know what is happening.