Hi,

Having finished treatment 2 months ago, I have been trying to take more foods by mouth to get off the PEG but the pain has made that a slow process. I had a barium swallow test that showed good swallow function but 2 strictures that are causing pain and reduced intake; so I have a dilation scheduled for Monday (4 days away). In the meantime, I've had episodes where my throat seems to close completely and not allow anything down it and then it opens a bit to allow soft foods, peaches, etc. Today I can't even get sips of water down; I have to gag it back up and it doesn't seem to be opening like before. My guess and fear is that the strictures are rapidly becoming thicker. My hope is that whatever is going on will be helped by Monday's procedure. In the meantime I am dealing with depression of things getting worse and having a hard time with this long, unending tunnel.

Oh - forgot to mention that at today's RO visit he said "maybe we should have given you less radiation". Wanted to shoot him. (I had 70g's; not sure if that is higher than average?)

Wondering if anyone else experienced/experiences times where swallowing seems to come and go?

Thanks for listening and being here with me.

Best,

66-70 is pretty standard to the primary, but not everywhere gets that amount, 62Gy to nodes, lesser to salivary glands, etc. My swallowing is like a roller coaster sometimes. Medications can effect dry mouth, certain foods require more chewing, and my swallowing diminishes over timing in one meal, so I don't eat large portions, and tend to eat moist foods, casseroles, soups, more fat in meats, poultry, butter, olive oil to help swallow, and water. I also eat food warm, not hot. Tell the doctors, and see about the anxiety, possible meds, counseling, support groups. Good luck.

Hi Nancy: After reading your bio at the end of your post, I noticed that we probably had very similar cancers and treatment; I was just two years ahead of you. (My primary tumor was also the left tonsil.) Congrats on finishing treatment and being in recovery. I have noticed these past two years since treatment that swallowing is easier at some times and not at other times. I don't know why that is. Sometimes I need a lot of water to get the food down and sometimes none at all. My oncologist told me at my last appointment that the protocol for HPV+ cancers like mine (don't know if yours was HPV+ or not) but for HPV+ cancers they will probably start recommending less radiation because these tumors respond so well to treatment. When I first began eating solids again (about two months after treatment ended) I could only do saucy and soupy foods - asian and italian cooking was easiest. Steak and chicken can still be hard for me, unless I have a lot of sauce, and even then steak is difficult. I was told that it's one of the hardest food for the likes of us. Good luck with everything. As you know, recovering from this treatment is a long process, but everyday brings new healing. -Michelle

PS I am also in Massachusetts. I wonder, did you have treatment in Boston? Dana Farber? I live in western Mass, so I went through Bay State, in Springfield, and I was pretty happy overall with treatment. I worked with some great docs there.

Thanks All. Middle of last night I woke up and could drink water with ease; this morning... back to closed feeling with water spraying all over back of mouth. Anxious and scared to see what they find during Monday's procedure.

Michelle - Yes, I'm in Massachusett as well, just outside of Worcester. My ENT is in Boston at Mass Eye/Ear, but I had my chemo and radiation at UMass Worcester. My MO and RO all work and spoke with SO/ENT in Boston so everyone was on the same page.

Nancy, in case you didnt know in the fall there is a walk in the Boston area. There will be other OCF members at the OCF Boston walk. I hope you will be able to attend!

Best wishes Monday!!!

Good luck at your appointment today. Hope all goes well. -Michelle

Well I had the dilation yesterday morning. The procedure took less than 30 minutes and went well - definitely an improvement. The doctor found that instead of general narrowing, I had more of a band formed across my esphogus. My earlier swallow test revealed 2 separate strictures, so my guess is they bonded together to form a 'bridge'; not sure of the thickness. He was able to break through and I can now swallow again (it had closed to the point of not being able to get anything, even saliva, down). He said he didn't want to overdue it in one session so he wants to do it again in a week or two; it will give him a chance to see if/how it responds and also to open it a bit further. Gee - so much fun the first time, let's do it again.

My throat is quite sore today; pain meds help a lot. I am drinking as much as I can and taking soft foods. Jury is out for what all this means in the long run, so as always just trying to focus on one day at a time.

As alway, my prayers and best wishes to all.

Wow, what an ordeal Nancy. Good news is your body must be healing with all that scar tissue it is creating. Bad news is your body must be healing with all that scar tissue it is creating. I believe the body's innate ability to heal can be the toughest part of this journey. The scarring, fibrosing, adhesions, etc., are all the same thing...a problem waiting to be discovered.

Hopefully they cleared things enough for you to swallow. Prayers for the swallow to continually improve.

Ed