Posted By: betty brown Information needed - 07-03-2002 08:21 PM
I read a few of the forum intros and am really impressed with the warmth and support that you all offer. I hope that someone will be able to give me some needed information. I've searched for hours on the internet for useful patient information, to no avail.
My husband is a survivor of maxillary sinus cancer from 1996. He had extensive radiation to shrink the tumor so that they could operate. This was successful and the right side of his face was removed, from eyebrow to (including)palate. There have been several follow-up surgeries due to radiation necrosis, but there was never a reoccurrence of that cancer. He had reconstruction done, using his hip bone among other things.
6 weeks ago, he was diagnosed with oropharyngeal cancer of the left side and just had it removed, along with all his left lymph nodes. This time, a free flap reconstruction was done as part of the surgery.
I am hopeful that someone with experience will be able to give us useful information.
1)Oral hygiene: he has asked me to make a mixture of salt water for him to use to rinse the mouth. I'm looking for the ratio, and also whether or not I should add hydrogen peroxide to this. Also, if anyone has useful tips to give on cleaning a mouth that only opens 1 inch, and has muscus so thick that it has to be swabbed out...
2)Lymph nodes: what risks/surprises are in store for us, now that the lymph nodes are gone?
3)Swallow therapy: he says that he will learn eventually on his own and doesn't want an apt with the therapist. Does anyone have experience and advice on this?
Thank you for your help. Hugs and best wishes!
Posted By: Joanna Re: Information needed - 07-04-2002 01:21 AM
Oh Betty, what you have both been through! My heart goes out to you both.

Regarding your first question, the recipe is 1 tsp. of baking soda and 1 tsp. of salt to one quart of warm water. I find this very soothing as I go through radiation. I mix it in a water bottle, and it cools, which I find just as good. Don't know why the instructions say "warm." I have been told to swish and spit with this many times per day, at least a dozen or more.

I am missing lymph nodes on the right side. There was a great deal of swelling, which I managed to reduce with what is called Lateral Massage. With two fingers, gently massage up and down, then back and forth, over the swollen areas. Do not sleep on the swollen side. I saw a pretty rapid reduction using this method. Other than the scar, there is now not much difference from the other side.

You can count on more informed people answering your other question.

Best of luck to you!

Joanna
Posted By: gnelson Re: Information needed - 07-04-2002 12:05 PM
Hi Betty, Your husband has been through a lot. My husband had to debreed my mouth with a solution of hydrogen peroxide and water with large size Q-tip. My home care nurse gave us sponge type swabs to use, and lemon flavored swabs this was for moisture because at that point my mouth was very dry. You should really contact your Doctor, nurse or home care person to see whats safest for your husbands case. You can get a fungus in your mouth when your not eating for a long time, my mouth started to taste like dirt, when I went in for my check-up I had a fungus! On top of everythin else I felt that was disgusting, Medication got rid of it very quickly. Good luck to you. gnelson
Posted By: Donna Re: Information needed - 07-06-2002 11:39 AM
Betty.......Have your husband try a water pic for cleaning his oral cavity. I used the water pic quite frequently toward the end of radiation and I found it both soothing and helpful in removing the "crud" from the back of my mouth and in the crevices. Also, have you tried the Biotene products yet? Biotene has both a mouthwash and a toothpaste that are worth trying out. You can find these products at the local pharmacy, and if they don't carry Biotene products ask the pharmacist to order them for you. Target just started carrying Biotene products too. Hope this helps! Sincerely Donna
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