#49112 11-06-2007 12:56 PM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Hi All,
Glad to see so many of the same faces out here.
I am having trouble with my tounge and was wondering if anyone else has experienced this?
My tounge feels like a taste bud went south. That is the best way I can describe it.
Right in the middle toward the back. It is making food tase funny and starting to freak me out a litlle honestly.
Getting to see my ENT Doc is like getting an appointment with the pope, so I though I would ask if anybody out here has ever had anything like that.
Hope to hear from you all soon.
-rh
Take it easy.
Robert H.
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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#49113 11-14-2007 12:31 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Well I don't know if this helps, but in spite of having good salivary function I developed thrush almost 5 years post Tx, out of the clear blue sky, confirmed with a culture. It was all on the tongue and didn't resemble the thrush I had going through treatment.
Tell your ENT you think you have thrush - that should get you in there sooner.
Gary Allsebrook
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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)
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#49114 11-15-2007 07:33 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Robr,, I have no taste at all right now and had good taste after the surgery. Everything if it does have a taste, is like amouth full of salt. It burns pretty good and if i eat anythins sweet my tongue feels like it's on fire. I guess it's just something that occurs . Wish I could give you some advice but I'm at a loss too. Have a great day..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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#49115 11-15-2007 08:52 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hey Robert! Good to see you around again! I'm a bit confused, though. Does everything taste Tex-Mex or farther south??  I have found that through all of this, I can eat the exact same food two or three times in the same week (leftovers of course) and each time it tastes different. I wanted to get back to some Cran-Ras last week and after two glasses in two days it took a week to get things tasting reasonable again with a thrush outbreak mixed in. The change in seasons we are going through makes everything taste different for a couple of days and it hurts to swallow. It has happened enough so I just figure it is part of life every few months. Get it checked out but I have found the ENT mostly says Hmmmm, I haven't seen that before or I have heard that before and nothing much more than that. Take care and Happy Holidays. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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