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Post Treatment Issues

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Subject: RE: Post treatment issues
Date: 02/20/2008

First congratualtions on hitting the first major milestone at 2 years. When you get to the 5 year mark, you will another cause to celebrate because the probability of recurrent disease markedly drops off.

Dry mouth/throat: Common; a nuisance; no cure but tolerable (as if we have any other choice). I would be hopeful that tast comes back but slowly-years. For the first 6- years I was highly intolerant of any spicy foods but now love them. The oral sensitivity/discomfort abates but really, really slowly. Stick to a diet that is healthy but not irritating to the mouth. Even if not hungry, you have to force in nutrition every day; this will improve and smell/tast will comeback.

I recall my ENT provider prescribed Sialagen tabs to stimulate saliva; I tried it but was never impressed for me; their are a number of artifical saliva agents out there to try but I found just sipping fluids was all I needed. At night it's tough as you will have a dry mouth no matter what. Keeping a bottle or cup of water on your nightstand may help along with kleenex for the mucous production from intense mucositis.

Mucous production; primary from the posterior nasal area above your soft palate; constant; does decrease over the years but never completely abates. Definently exacerbated by certain foods. I supplement my diet with powdered protein from a local health food store and buy soy milk at Sams. Unfortunately, a common off shoot is increased thick mucous production and interference with the airway at the level of the vocal cords as I have vocal cord paralysis and difficulty swallowing. I have often wished I had invested in a bedside suction maching to help with the initial horrendous production of mucous.

Pain; common; may be transient, episodic or continuous. First have your ENT or Oral sugeon exam you and get xrays as needed. It's okay to use analgesic or pain meds when needed. I responded earlier today to a patient experiencing probable radiation induced neuropathic pain often presenting in the ear as a referred pain from the oral pharynx and lateral tongue as a sign of impending permanent nerve death albeit slow. If you have an ENT physician who actually has real world experience with post radiation treated patients then you are fortunate as many have none or limited experience. If you live near a major teaching hospital with an ENT residency, they usually have faculty who are experienced in this area. If you can afford it, a trip to MD Anderson to their ENT physicians involved in head andneck squamous carcinomas may be  worth considering if you feel your issues are not being addressed locally.

Future eating issues: Assuming they did not do surgery on your tongue, any future swallowing issues will be a result of radiation induced permanent nerve damage. Mine did not functionally begin to show up until I was 5-6 years out although I later realized I was experiencing episodic bouts of neuropathic pain in the ear/tongue that would last about 2 weeks and made speaking difficult from pain in those first 5 years Since then the nerve damage to my tongue, swallowing muscles and vocal cord paralysis has progresively worsened month after month. It is relentlesss and there is no known effective treatment or preventitive intervention that I have found. The type and extent of radiation has a lot to do with this. It is my understanding the type Ireceived isno longer being done. You develop a munmber of tricks as time evolves to continue to speak (somewhat understandably), swallow and breath. If your an athelete, there are a number of other issues you learn to deal with.

Can you share moreabout your problem? How old are you, did you ever smoke, did or do you consumme alcohol, travel or live in the far east, have numerous strep throat infections as a child or were exposed to potential environmental threats?

Feel free to write with questions and I will try and provide advice based upon my personal experience.

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