#60405 03-01-2007 01:18 PM | Joined: Feb 2007 Posts: 14 Member | OP Member Joined: Feb 2007 Posts: 14 | My Dr has told me to try and eat (I have the "tube"),but unless it's room temp water any food makes the back of my tongue sting and burn terrible. I'm a bit over 2 months from radiation, but should my tongue be healed up enough to eat? I know everyone is different, but is there anyone out that had the same problem?
58 yrs old. Stage 4 SCC base of tongue T4N2M0 no surgery chemo 7x radiation 35x completed treatments 12/20/06
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#60406 03-01-2007 01:37 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Yes. I still had a really sore and sensitive tongue at two months out, it was a little better at 3 months out and at 4 months out better still. Keep trying things. I still have a very sensitive mouth,actually, although this may be because I ahd an esophageal stricture for quite a while and didn't try to swaalow anything and so my mouth never got desentisitzed. I'm hoping as I push myself more, it will get less sensitive.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#60407 03-01-2007 04:24 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Bob,
I also had a really sensitive tongue at that point, and anything cold was painful. I had to keep using the "swish and spit" numbing stuff that my RO gave me until the pain subsided enough to handle food a little bit more normally. I never had a tube, so the burning sensation in my throat was a regular occurrence at mealtime for weeks, both during and after treatment.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#60408 03-01-2007 06:34 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi Bobd,
Also check for fungi infection, which will make your mouth really sensitive and hurt when you try and eat.
Make sure you are treating Dry Mouth with the Biotene products.
Yes, warm water is better than cold at this point is what I remember. Not hot not cold just room temperature. What ever you do keep swallowing!! Even if it is a sip of water every 15 minutes. Try anything you can. Try oatmeal a small amount with milk. Yogurt, cream of wheat, Ice Cream, Jell-o.
I could only take about a Tablespoon full at 2 months. I thought it was great! It all takes time so do not expect to much all at once. Every month is a change and an improvement. At 3 months you will start seeing more.
Take Care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#60409 03-04-2007 07:43 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Bob,
Just checking did you find the Biotene Products OK? Forgot to mention they are not prescription. I am sure you know that by now.
Hope things are a little better.
Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#60410 03-05-2007 12:33 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | If you are looking for Biotene products, Walgreens carries it.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#60411 03-05-2007 02:40 PM | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | bobd; Yes, I still drink water at room temperature and the few occasions we have went out I order my water (or tea) with no ice. 4 months out now and I have started to handle warmer (temperature wise) foods at this point, and every day is an improvement. Most things still have to be very bland (and soft) to tolerate. As far as Biotene products, Meijer (I noticed you're from Michigan) carries them. I've also seen the mouthwash at our Walmart and I asked them about the gum and they had it behind the counter (I think the gum has been a huge help combating Trismus, and I thought I would never chew a piece of gum again! My therapist said limit the usage to like 10 to 15 minutes or so at a time right now). I agree with everyone else, keep pushing yourself. It gets better. Best Regards,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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