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#36422 02-25-2003 01:02 PM
Joined: Dec 2002
Posts: 235
Platinum Member (200+ posts)
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Platinum Member (200+ posts)

Joined: Dec 2002
Posts: 235
Hi Jon, My husband (John) went through a lot of what you are going through now. He has stage III squamous cell carcinoma at the base of the tongue. Diagnosed (officially) as of 8/13/02. He went through and finished radiation treatments as of 11/29/02 - but during the months of October and November, his mouth, throat, tongue and neck were as raw as you can imagine. It was very difficult for him to swallow anything - even most liquids were painful. On top of all this, he had (and still has) many mouth sores. He managed to drink mostly chocolate milk and melted down ice cream, and some chicken noodle soup with the very thin noodles in it. (Mrs. Weiss's brand). But even the simplest of things - like drinking plain ole' water would oftentimes cause him to grimace in pain. So it sounds like what you are going through seems fairly routine. But I think in your case, you may want to look into getting the PEG tube to see that you are getting enough calories and nutrients, which I think you are not getting enough of as it is now. This is definitely something to discuss with your doctor. I can tell you from observing my husband that going through the radiation treatments was pure hell for him, and even afterwards - there is still many things to contend with, such as thick mucous and phlegm, dry mouth, persistant mouth sores, etc. I wish you all the best, and please talk over your concerns with your doctor(s) and caregivers as well. Let us know how things are going for you - but these things take A LOT of time before there is any "relief" it seems - so you gotta be patient and strong - but they will indeed get better as time goes by. Good luck!


DonnaJean
#36423 02-25-2003 03:32 PM
Joined: Nov 2002
Posts: 541
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Nov 2002
Posts: 541
John, sorry to hear your suffering.70 rounds of radiation is indeed a lot. Did your doctor mention the total dose? I think the doctor gives you a break on seeing the immense pain you are suffering. He should know what is the best for you and explain to you the possible side effects you have to cope with and the pros and cons of breaking the treatment for a few days. I am over a year after treatment and the mouth sores are still there but eating is not much of a problem now. The picture you describe is pretty normal to those receiving intensive radiation. Get your doctor to clear up any queries you have in mind.

Karen ,stage 4 tonsil cancer diagnosed in 9/01.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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