| | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | I realize the phlegm/saliva is horrible enough, but for me it's the sweet putrid taste that's worse. It makes me nauseous and I have no appetite. Does anyone have a solution for disguising the taste or dealing with it? Thanks in advance for any replies.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | I hate it for you Jim - at least I can cough (hack, yuk) mine up (continuously). I just wish I could somehow get rid of this putrid taste. I pray yours gets better.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Aug 2008 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2008 Posts: 30 | Hey, did your doctor have to order the home suction machine? It seems like that might be something good for my father. He has been dealing with huge amounts of phlegm following the dilation of his esophagus. He's miserable right now and we are trying to find ways to make him more comfortable.
Rett
Father 80 y/o with BOT Stage IV/ SCC, laser surgery to remove tumor 8/08, Hemi glossectomy, reconstructed tongue, right side neck dissection, RT began 10-8-08, chemo not recommended because of age, Peg tube, non smoker/drinker.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Julieann, the biotene mouthwash disguises the taste pretty well. I use it a few times a day. Brushing the tongue at times makes it worse. But that is a ne=cessity .
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | WE have done all of this talk about excessivve phlem > since I had the tubes installed, this stuf is really wicked and hard to keep free of. Not little chunks bt a mouthful at a time.
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
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Jim:
I just wonder if it ever gets better. (Been 2 years in Nov) I'm constantly hacking (yuk) up gobs, but what even makes it worse is the putrid sweet taste. Like I said before, not too many others seem to have the sweet taste. It's so sweet, my mouth is puckered inside when I wake in the mornings, and so sickening I have no appetite whatsoever. I try to eat what I can, but supplement with the Carnation VHC, which I believe you recommended to others. Here I am complaining and others cannot even swallow. I feel so guilty at times. I was pleased to read of your good results and hope you keep improving more and more every day.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Rett,
You need a script from your doctor for the suction machine. I would suggest you get the portable one. It is usually covered by insurance so needs to be ordered from whatever supplier that your insurer uses. I suspect his nurse will order for you. Cost runs about $25-40 a month for a rental.
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
| | | | | 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 can't tell if the taste is sweet or just plain nasty, LOL But it is terrible. When I see the green flys heading my way I close my mouth fast or I wouldlike I was on a motorcylce with my mouth opened for a few miles.
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
| | | | | Joined: Sep 2009 Posts: 53 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 53 | When you say Selzer do you mean sparkling soda water.
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Thats the one Jon.What we call fizzy drinks the americans call soda...confusing isnt it lol,what we cal soda water they call seltzer.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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