#48832 09-14-2007 06:17 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Helen,
Apple juice was one the FIRST things I could drink even when everything else burned my tongue. Shows just how different everyone is, unless they make it differently down under. I did take Zinc Sulphate after radiation recommended by dietician to help heal and improve taste.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#48833 09-14-2007 06:41 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jul 2005 Posts: 207 | Hi,
Not sure of the extent of his radiation, but it was 7 weeks after my treatment before I could eat. Taste comes back slowly. Sweets came first. I esp. like brown sugar on oatmeal. NO CARBONATED BEVERAGES for a while as they will burn.
Give it some time. I think it will slowly get back to normal.
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#48834 09-14-2007 02:45 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi,
My experience is more or less like Helen with my taste getting better gradually but not 100% as how I felt before treatment. Now that I have reached my 6th anniversary, the mouth sore is still with me and I can never eat anything spicy or take any carbonated beverages. Not a big deal as I still have a lot of food for my choice.
Karen
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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#48835 09-14-2007 03:46 PM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Steve,
I had forgotten about brown sugar on oatmeal. I must have eaten a ton of it while in Tx and several times daily in the first few weeks post Tx. It was great and is still a fond memory.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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#48836 09-15-2007 04:38 PM | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | I am 3 months out from treatment, taste started back at 2 weeks post tx, improving at two week intervals. I now have 85% of my taste back, if not more. I literally willed my taste back, smelling my food, then imagining that I actually tasted it even if I really couldn't. Call it 'taste training'.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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#48837 09-15-2007 07:26 PM | Joined: Sep 2007 Posts: 11 Member | | OP Member
Joined: Sep 2007 Posts: 11 | Thanks to all of you who responded on taste loss. VERY best wishes to you, Steve J. Hang in there! Joe is forcing himself to eat, even if he can't taste it. Started working out a little and that seem to improve his spirit. We were lucky to have several cases of Boost left from his feeding tube days. That has been a litteral lifesaver. He didn't have the feeding tube for the cancer, but the day after his tumor surgery was hit with a neuro-muscular disease that, within 5 days, paralyzed him totally and put him in ICU, on vent and feed tube for 3 months, THEN, he could address the cancer issue. He's had a long haul, but looks like dalight soon, thank God! | | |
#48838 09-16-2007 04:52 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Glad to hear youall are seeing some daylight! Way to go Joe! It would be neat if youwould expand your signature to let us know what has gone on with him so we could be better informed. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#48839 09-16-2007 06:23 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | Welcome to the new normal.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#48840 09-17-2007 02:17 PM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Hi, Just thought I'd give you all a good site with info on this topic. http://www.meei.harvard.edu/patient/taste.php Hope this is usefull to some of you. Cheers, Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
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#48841 09-20-2007 12:08 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have no taste on the right side , but on the left side where they did the surgery , I have good taste. I also have the burning tongue from anything sweet. Everything else is fine. Have great day all. Jim
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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