surgery and radiation

Well I can relate to the not
Well I can relate to the not being able to sleep part, but unfortunately really don't know the answer to your question. One thing the old timers have to say is that treatments affect everyone differently. That being said, it seems important to me to try and continue to swallow things as long as possible throughout treatment.

I was diagnosed on Aug 29th, with a primary tumor on mr right tonsil, and at least two lymph nodes. I suspect there is more, but havnt heard from my actual radiation oncologist. His nurse said it is regionally localized, what ever that means. I have been told that there will be no surgery for me just chemo and radiation.

Please share your name so I don't feel like I am talking with a stranger, but a friend .

I do know this. This disease is full of things to worry about, and very few of the worries do we have even the slightest control over. That being said, your question is very valid, and should be run past your medical professionals. Try to keep a notebook by the bed to write these questions as you get them, then try to let them out of your mind. Have your husbands physician prescribe a sleep aid, as I am sure that most of us have a lot of sleepless nights.
The notebook will help with recording what meds were taken when, as I have at least a dozen different meds for different things.

I don't know your spiritual or religious background, but I know that putting my faith in Jesus, has brought me a lot of peace, in an unpeaceful situation. I also realize that this disease is bigger than any one person can carry on their own, so don't be afraid to ask for help from medical professionals, freinds, family, clergy, and all of your new freinds here.
I whispered a prayer in your behalf, just before I hit send, may his blessings be plentiful and apparent. Hang in there, you are both in for a tough fight. Take care of yourself, and let the blessings begin.......

luvofmylif said:

My name is Joan and my
My name is Joan and my husband's name is John. Our names both mean the "grace of God" and without his grace we would have nothing. That being said I think besides fear the hardest part of this situation is loss of control. Suddenly one day everything that was normal is gone. It affects your life in everyway possible.

I am fearful of the radiation and chemo. I fear the treatments and the unknown outcomes. I fear watching my husband suffer. But, apparently there is no other choice then this.

Thank you for your blessings and information

Problems very possible but...
Hi Joan, I had treatment for BOT back in 2004. In 2007, I started having problems swallowing due to an esophageal stricture. I started having dilations every month or so which allowed me to keep on swallowing. Last year, I had mandible surgery. I didn't have any dilations for six months. I found myself not being able to swallow anything. Even the dilations weren't helping. I recently had a swallow test. My swallow therapist told me my hyoid bone was not moving forward to start the swallow mechanism. She said this was probably due to the fibrosis in my neck.

I was about to give up until I read a post by Bigfuzzydoug about chiropractic treatments he went through. He said the chiropractor was able to break up the fibrosis through manipulating his throat with his thumbs. I recently contacted a chiropractor and he told me about treatments called the Graston Technique that will break up fibrosis with strange looking instruments (see Grastontechnique.com). I haven't started these treatments yet but they sound encouraging. My point is, even if John does come down with fibrosis hampering his swallowing, there is hope of breaking it up.

D Lewis said:

Welcome, Joan!
So sorry you and John have to be in this place, but you will get the support and answers you need from us all. I had Stage 4 base of tongue. No tongue surgery, but I did have a large lymph node removed, and a later surgery to remove my tonsils and 'biopsy' my tongue. I'm 2 1/3 years out from end of treatment. I do have fibrosis, and I have very little saliva. They had to give me the maximum dose of radiation, owing to extensive involvement of lymph nodes on both sides, and it cooked my salivary glands.

I describe my swallow as "compromised." I can eat pretty much whatever I want. Some things take so much effort that I don't eat a lot of them. I take small bites, chew them well, and I keep water handy to wash down the stuff that sticks. Dry and chewy meats don't work so well. Breads can be problematic, but I do enjoy my favorite sourdough with lots of butter or olive oil. Cheeseburgers I can handle, especially with lots of mayo, onions, tomato and lettuce. All vegetable and fruits taste great and are easy to eat. Desserts are not so appealing. I still can't much taste sugar, and "fluffy" foods (cake) are hard to get down.

Others have said.. 'keep practicing your swallow.' I did that. I had a feeding tube for the last half of my treatment. I don't believe it impaired my swallow, as I drank lukewarm green tea and water through my treatment. I have not had any issues with stricture. I am comfortable eating out in restaurants, although I am careful what I order.

Deb

Joan
My best advice is not to borrow trouble but to take things as they come and deal with them. You can spend so much time & energy worrying about things that may never come to be. Having said that, I had a 19 hour surgery and had my mandible replace with titanium and the fibula from my leg. I have what I consider very good range of motion in my neck. A touch of lymphedema that I am getting neck massage therapy for and it is helping. My surgeon told me if I ever came to the point of not being able to swallow to call him immediately, that never happened. I had a g-tube which I used a brief while but always continued to drink and swallow. It is a difficult journey but when your husband comes out on the other side with "no evidence of disease" it will be worthwhile. God bless

CivilMatt said:

good luck for everything
luvofmylif,

I had BOT surgery and lateral dissection of the Jugular vein. Base of tongue never felt anything to start with, never felt anything after surgery or today. Neck dissection, numbness in surgery area including lower cheek, some pain, no medications (today a little numb). Swallowing, this site had me so afraid my throat would swell up and I would quit swallowing and have to re-learn to swallow and speak again. I started drinking (lots) of water at the beginning of treatments and continue today (8 glasses today and probably 1 more) and that does not include the coffee I drank today. Anyway I ramble on; my tongue is fine and so is my swallowing (fingers crossed).

Take everything you read here seriously, but pray for a gentle uneventful journey.

Best,

Matt

I was like Matt thru treatment....
I had so much fear of losing my ability to swallow, that I kept on swallowing something no matter what hurdles were put in front of me. In the beginning, during simutanious radiation and chemo, I had no issues eating/drinking my Boost and Ensure...however during the last half of my treatment, mouth sores plagued me for 3 weeks out of every 4...I swallowed water with L-Glutimine mixed in, just to make sure my swallower worked....

Also, I agree with not borrowing trouble...one of the best pieces of advice I ever got on here came right at the beginning. "Don't fight any battles you aren't facing"....enough energy will be going out taking care of things that are in front of you...so unless a problem is right there at your doorstep, don't waste time on it.

p