HI Mark,
Lee is currently undergoing chemo and IMRT rad( 8 more to go.) We are aware that the rad will cause a temporary backslide but were hoping to find some long term answers with regard to swallowing. The issue is that without a tongue, the food or liquid must usually be pushed to back of mouth. This will be extremely difficult without an epiglottis or the false vocal cords to prevent aspiration.
Lee had tonsillar non-hodgkin's lymphoma 10 yrs. ago with chemo and mantle field rad. He has since had typical posr-rad symptoms- dry mouth, some difficulty swallowing,etc. so his symptoms this time were vague and somewhat attributable to pasr rad. The past rad also made it impossible to have the treatment of choice for his CA-chemo and rad first-impossible since the area was previously heavily radiated. He was thankfully able to have some rad which improved his prognosis. The surgeons were also surprised that he had no node involvement as he used the word "massive" on too many occasions. They also got all the cancer with clean margins and only one close one. They recommended chemo and rad only because of the sheer size of the tumor. It has ben quite a ride, but we feel grateful they could offer treatment. I hope that when he is feeling better, he will chat with some of you. He is feeling pretty bad physically right now and is depressed as well-we are lucky to have a beautiful little boy to give us hope and courage.
Your picture is great-very encouraging. Congratulations on your good health and kind spirit..
Doreen