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#42609 06-16-2003 03:00 PM
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Lisa B Offline OP
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Just checking in. My Dad, Bill, was diagnosed w/ Stage 3 Oral in the tonsils and tongue in Feb.
He has completed 2+ months of chemo and radiation and was completely defeated and notably exhausted. Lost 45+ lbs and went with PEG tube. Hospitalized twice with fribullation (sp?), malnutrition and dehydration.
Now, in recovery, we are delighted to note that the mucous has let up enough that he can speak through it and most recently he has eaten a very soft boiled egg and jello! He has taken his medication via mouth in just the past few days. Question to all...he describes "taste" as foul...not "tasteless". Is there a horrible flavor associated w/ all foods and if so, for how long? Also, how long will the mucous last?
We are in the midst of transferring him and Mom home to Maine from Florida where they have been "stranded" since treatment began. Thanks to all for any insight you might offer.

#42610 06-16-2003 04:00 PM
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I was told during my pre-radiation consultation that it could go one or both ways on the taste issue. I was lucky enough not to taste food. The other option would have been a real problem for me since I did not have a PEG. So, although I did not experience it, I believe it is a "normal" post radiation condition.

Glenn

#42611 06-16-2003 06:19 PM
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First time around I had radiation to the tongue, neck, and about 4 weeks into treatment just about everything tasted like sawdust. Later, couldn't eat anything because of the pain and wound up, like your father, in the hospital for feeding and re-hydration.

The taste should come back to a certain extent later with time. Probably some things won't taste the same for a long time. If you look back in the forums, a lot of people loose the abilities to taste sweets and chocolate, others spices, just depends on the individual.

Thing is to explore different foods and possibly cuisines that you father might like with his changed set of taste buds. Seems I don't like a lot of things I used to love, but now like a lot of things I wouldn't touch before. Go figure.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#42612 06-16-2003 08:22 PM
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Hi Lisa,
I had chemo and IMRT radiation and it made everything taste either metallic, like sawdust or s**t. I am happy to report that my taste buds starting coming back about 3-4 weeks after cessation of treatment and most tastes are normal again (88 days today). Like your Dad, I ended up being rehydrated a couple of times and I'm still grossly underweight and trying like heck to bump up my calorie intake. I lost close to 60 lbs. In my experience, I found that most natural foods tasted ok and processed foods tasted the worst. The mucous problem just up and went away after about 4-6 weeks and is no where near as unpleasant. I am not as fatigued as I was and I am not dizzy that often now when I stand up. Be patient - it takes a long time.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#42613 06-17-2003 04:36 AM
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Hi Lisa, I was diagnosed on 1/15/03 with SCC at the base of tongue which had spread to the lymph nodes on one side of my neck. I finished my treatments on April 11 which included 6 weeks of radiation and 2 rounds of chemo. During my treatment, especially after my second round of chemo, things begin to taste really bad, a lot of things seemed to taste "burnt" to me. Like many others I eventually had to go to a PEG tube to keep my nutrition up. I lost 30 pounds during treatment and also had a couple of trips to the emergency room because of dehydration. I eventually lost all of my taste. I'm now 10 weeks out and I can report that my taste is ever so slightly starting to come back. I started 4 weeks ago trying to get back to regular eating. It's been a challenge for me as eating seems to irritate my throat quite a bit. A small victory for me happened last week when I went to a mexican food restaurant with my family and downed a cheese enchilada with some refried beans. So my message is be patient, things will get better! My radiation oncologist told me it would be 6 months before I would get most of my taste back.

RAZ


RAZ
SCC base of tongue w/ nodes on right side

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