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Joined: Jun 2009
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Just checking to see if any of you recognize any of these symptoms that could have been caused from radiation/chemo. I have had problems for about 2 years that I haven�t read anything similar from you guys. Please let me know if you have heard of, or experienced like symptoms. My local doctors and some from Vanderbilt University and University of Alabama all come up with the same thing: after-radiation side-effects. Four years ago, January, I finished my treatments for tonsil cancer. I went through the �normal� process of much mucus, feeding tube, no appetite, etc. Mucus then tasted either metallic or salty. Then things tapered off and less mucus. I never had dry mouth at that point.

Then about a year later, suddenly started having super dry mouth when waking, but as soon as I rinsed mouth/teeth and gargled, dry mouth went away, but I started having the most putrid sweet (snotty, sorry) taste, along with white frothy mucus. This was continual all day, and sometimes the frothiness changed to pasty, but taste was the same. Every ENT I went to and had numerous endoscopies and checks said it was radiation. Had an MRI with contrast recently that showed a mass in my hypopharyngeal site, so RO had ENT do a biopsy. Still awaiting some results, (NO CANCER ) but culture showed 4+ Gram Positive Cocci, and 2+ gram Positive Rods. My urinalysis showed I had 100,000 CFU/ML E. COLI, and a culture of mucus in mouth showed yeast. So, I�m trying to get these taken care of by an Infectious disease doctor since ENT and RO say they know very little about those findings.

I went to a Vanderbilt University ENT last Friday, she did the scope thing up my nose and down my throat (forgot what it was called), and found nothing that she said would account for the frothy sweet taste, and that she thinks it�s from radiation. In your opinion(s) do you think, like me, there is something going on other than the radiation after-effects, and if so, how would you handle it? I have been to several local ENTs, and I think they correspond with each other and I�m looked at as a �basket case.� My RO prescribed Paxil . So far, I have taken antibiotics for the E.COLI, and did another urine test Friday. I haven�t been able to find a doctor who deals with or treats Cocci, so haven�t had medication for that. My suspicions for the taste is that mucus/infection(?) is coming from nasal area, or perhaps the hypopharyngeal site. Do any of you have a suggestion as to how I should pursue this and not just try to live with it believing it�s a late reaction from radiation. My feeling is it�s not. Thank you for taking the time to read this and letting me know what your opinion is. I have gotten so much information from this Forum, I thought, okay, Julieann, put this question out to them and see what happens.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Im sorry Julieann but I have not run into anything similar on this forum. I wish I could help.

I find it odd that you never went thru the dry mouth phase like everyone else did about a month after finishing treatments. It was thick gagging mucous one day then dry mouth the next. The dry mouth hung around for a few months gradually getting a little better as time went by.

I really hope someone will be able to help you find and answer to your problems!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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sounds like thrush. I had it. my mouth tasted just all over yucky. It'sa fungus infection antibiotics doesn't help. You take an anti fungle pill and suck on a tablet.I was diagnosed by an oral sergoen. hope it helps if that is what it is. good luck.


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
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Thanks Patrick:
That's what I thought, and most of the ENTs think, but I have been on Diflucan 100 mg and the tablets you're talking about, Clotrimazole 10 mg troche for "forever." I, too think it's a fungal or bacterial infection and probably associated with the positive gram cocci in my hypopharyngeal area. But, try to tell a doctor! I'm having a hard time getting medication for that. It was found during a biopsy. I'm hoping someone will read this that has bacterial or fungus infections (other than thrush) a lot after they've finished their treatments (4 years for me). I know our immune systems are weakened and we are succeptible to getting all sort of illnesses. The putrid sweet taste is what the doctors do admit that they know nothing about. Thanks, again for reading my long post and answering.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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