#47057 07-30-2006 08:05 AM | Joined: Jul 2006 Posts: 47 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2006 Posts: 47 | I'm new here and I'm so glad to have found this forum! My husband was diagnosed in June with right tonsil primary after having a mass of lymph nodes removed from his neck. He is struggling with sour, dry mouth. He has had 6 of 33 planned radiation treatments. He is also getting Cisplatin and Erbitux; Cisplatin every 3 weeks and Erbitux weekly. He's had two Erbitux treatments and one Cisplatin. Erbitux is giving him an acne-like rash. He's had a little nausea. But what's driving him the most batty right now (knowing that it's early) is a sour taste in his mouth along with dry mouth. He's sucking on life savers but we're curious to know if anyone else has dealt other ways. Even though he has lost some taste, this sour taste remains. We know it will get worse in some ways before it gets better. I'm happy to be among friends here for the journey! Joyce
CG to Tom dx SCC 5/06; right neck lymph nodes removed, dx right tonsil and tonsillectomy 6/06; rad and chemo started 7/06; treatment COMPLETED 9/06 33x rad; Erbitux (8x); Cisplatin (2);
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#47058 07-30-2006 04:00 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 | JOyce, does he rinse with anything? [baking soda and water comes to mind] Are you checking for thrush? Amy p.s. I coat JOhn's rash 2x a day with Neosporin or a lidocane based anti itch cream.
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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#47059 07-30-2006 06:20 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 | I had a bad taste in my mouth all through radiation and after for several weeks. But constant rinsing with salt water and baking soda solution helped a lot during treatment. Thrush could also be a cause and you should be sure that is treated promptly if that's the case.
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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#47060 07-31-2006 02:45 AM | Joined: Jul 2006 Posts: 47 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2006 Posts: 47 | He rinses with a solution of baking soda and salt, mixed according to a recipe given to us by the MO. Also, he has recently tried an OTC product called Oasis mouth rinse. It helps with moisture but he still has the sour taste. I'll have him open widde and check for spots. Thanks for the advice Amy, I'm curious to hear how John is doing with the Erbitux. Tom has had two infusions and has the rash in full bloom. He's self-conscious about it, but agrees that as far as side effects go, it's not so bad. Also, I read about John's reaction to Ativan. My dad had a similar reaction when he was treated for pancreatic cancer. The hospice folks said that when patients don't tolerate Ativan, it effectively rules out a whole "family" of pain killers (with similar ingredients, I guess) and after that, he went straight to morphine. Joyce
CG to Tom dx SCC 5/06; right neck lymph nodes removed, dx right tonsil and tonsillectomy 6/06; rad and chemo started 7/06; treatment COMPLETED 9/06 33x rad; Erbitux (8x); Cisplatin (2);
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#47061 07-31-2006 05:00 AM | Joined: Mar 2002 Posts: 4,916 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 57 | Has he tried any of the products from Biotene? It's OTC and may help with this. It will certainly help with keep the natural balance of flora in his mouth. Toothpaste, mouthwash, oral moisturizers... they hve it all, and the products work well for me and many others.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#47062 07-31-2006 04:21 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 | Joyce, we are working 2 different pages here. I just wrote you back in the other one. Amy
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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