#57528 12-14-2005 03:51 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Need some reassurance please! John's last IMRT was July 8th, this year. For a while he was doing really well. Over the past 5 weeks, his mouth has gotten worse-really thick mucous- glued shut in the am- has to gargle, rinse, etc. all day, takes 2 bites of food and heads for the water pic, weight going down-not up. He is having ear aches and head aches[in the 13 yrs. we've been married, he has rarely had a headache.] He started on the Robitussin a few days ago to see if it would help with the "gunk", which he says feels like F26 [construction adheasive] in his mouth. Any other things to try? He's really feeling down about this. and I am really worried about the head and ear pain. 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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#57529 12-14-2005 04:20 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Amy,
Ear pain and headaches can be signs of any number of things, so if they persist it's best to have his doctor investigate. However, one thing that has caused ear pain (and some related headaches) for me is ear wax. I've heard that hard wax can build up following radiation, and I've had repeated instances where it was enough to cause real pressure. It was embedded sufficiently deep in the ear canal that the people in the local ear clinic said it had to be professionally removed (usually with some sort of probe and the world's smallest vacuum cleaner).
I hope the reason for John's pain can be easily found and remedied.
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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#57530 12-15-2005 01:21 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Amy, Well I'm sure you've heard what my ENT has repeatedly told me when I complain about gunky mucous, etc., which is that it takes 8 months to a year to heal and until then I'm likely to have all sorts of unpleasant symptoms.
Is John taking salagen or the other drug that's supposed to stimulate saliva? I've found since I started taking Salagen (and especially now that I'm on a little higher dose than the minimum) that I'm having more thick mucous again. I also have sort of a chronic "getting a cold" feeling. I sneeze a lot at the beginning of the day and have to blow my nose several times, and more often throughout the day, although I never get really stuffed up. I also seem to have slightly more mild sinus-type headaches. (But yet I still wake up with a painfully dry mouth in the morning!)
Anyway, I agree with Cathy that the headache thing is something that should definitely be checked and I hope it all turns out to be a bump in the road that gets better over time.
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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#57531 12-15-2005 02:21 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | When Barry suddenly started getting really bad mouth mucous and gunk (this just after the end of his treatment) after not having serious problems along that line, it turned out he had a pneumonia and a bacteremia (blood infection). As soon as he went onto the IV antibiotics, the excessive mucous started to go away and was gone by the end of the oral antibiotic course he took afterwards.
I showed Barry your post and he advised that John ask his doctor to do blood work which would indicate if he has some kind of latent infection going on -- not necessarily what Barry had, could be his sinuses or ears -- so this can get treated.
Barry has no mouth gunk now and hasn't for over a month, since the infections were completely cleared up (it took several weeks to be sure the "walking pneumonia" was gone) --
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#57532 12-15-2005 05:37 AM | Joined: Apr 2005 Posts: 25 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2005 Posts: 25 | For the last several weeks of radiation and for about eight weeks post treatment I had similar complaints of thick junky mucus that was difficult to bring up. Someone here suggested club soda, was a life saver, works like little scrubbing bubbles. Swish and spit, as many times as necessary. The screw top bottles will stay fresh and carbonated about 18 hours. Good luck. Edd | | |
#57533 12-16-2005 05:19 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | Edd - Those scrubbing bubbles helped me too. They still do from time to time. That construction adhesive grade mucous is really nasty, but it does slowly improve. It took nearly a year for mine to settle down. Root beer is my favorite brew for treating it. Mine comes back on occasion, but the A&W rinses it away nicely. Good luck with it, Tom
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#57534 12-17-2005 12:32 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Thanks all, we just got back in town from my duaghter's RN graduation. Will print off all of the above for John. 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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#57535 12-17-2005 02:38 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Amy, While the suggestions above may alleviate the mucous/saliva problem, I would not ignore the ear pain and headaches. I would call the dr, make an appointment and ask about these if they persist to make certain everything is still ok especially if they last longer than two weeks. Remember early detection is the key. Here's hoping that it nothing but a another one of those annoying side effects that keep on giving.
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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