| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Another is rinsing with meat tenderizer, Adolf's brand I read, mixed with liquid. Maybe use the papaya juice with it even. It may seem odd, but when I read it about using meat tenderizer for mucus, I recalled having back surgery 30 years ago for a herniated disc, and had a cymopapain injection ( basically meat tenderizer and papaya) to loosen the disc material off of the nerve, and it worked, so it may be good for the mucus too.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | The bottom line is these few weeks are the pits and you are doing everything you can to get through them. If your hours are screwed up, so be it. The light at the end of the tunnel gets brighter and brighter with each passing day!! Count on it and enjoy your sleep when you can. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Jul 2012 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 47 | Thanks Kathy, that is exactly what I need to hear!
Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.
Jessica, age 38
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | You're welcome...hang in there.
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | HI Curly My Alex has ongoing issues with "foam" which is exactly as he describes it. It has improved over the past 2 years but is particularly obvious when he is tired or has been talking alot. I understand the mechanisms of many drug actions, including how cough medicines work, so when we discussed the cough medicine as a possible solution, it made sense to me that it should be an expectorant. There are two sorts of cough medicines. One is a "suppressant" which dampens down the cough reflex and is mostly recommended when you need to stop a cough (usually because it is keeping you awake at night and hurts). The other medicine is an "expectorant" which makes it easier to cough the gunk up by making it less viscous and sticky. In Australia, Robotussin is a brand that contains a suppressant, which goes against what I think you are trying to achieve (unless you DO want to stop the cough). Formulations differ from country to country so check this with your pharmacist first. Explain to the pharmacist that you want to thin the mucous or make it easier to cough and he/she may recommend a better alternative. Having said all that, neither of these worked for Alex. To this day, he wakes with a dry mouth that develops into foam the second he starts talking or drinking. Alex's saviour has been the Water Pik and as ChristineB suggests, done at the lowest speed. Alex also found that slightly warmed water (tepid) was good. Pandora also warned Alex that he should close his eyes to what came out of his mouth. I would second that suggestion and add "close the bathroom door" to the advice . This method of "foam" control works for a couple of hours, and Alex uses his water pik before he goes out. Alex is peculiar in that he is the only one I know of who has "foam" as an ongoing issue (although now I read that there is one other), so yours is likely to go away in time as for most people. Also, I would like to reiterate what others have already said - it DOES get better. It is important you keep reminding yourself of this, so you know the frustration (and possibly self consciousness) you are currently experiencing will be but a memory in a few months time
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Karen: I am the one Christine mentioned who has this horrible foamy mucus in my mouth 24/7. I wake in the a.m. with a super dry mouth, and as soon as I brush my teeth, rinse my mouth, the foam starts. Mine has a horrible taste (putrid sweet and sometimes like buttermilk, yuk but mostly so sweet it's unbearable. This is when I haven't even eaten anything, so it's not the normal "taste distortion" that most have following radiation/chemo. I have been to many ENTs, had gastro edoscopies, and other tests, to no avail. Does Alex have any type "taste" with his? Sometimes during the day the foam will change to a solid drip down my throat. I've tried EVERYTHING imaginable for post-nasal drip; the "foamy stuff" is what is so bad - I feel like a rabid dog, and sometimes my mouth gets so full, it seeps out onto the sides of my lips. I'm going to send you a PM tomorrow with some other information and see if it sounds familiar to Alex. Tell him to hang in there - hopefully we'll find a solution or it'll stop. I just had my FIFTH anniversity since treatments in November. This foam started about 2 years ago. Nite nite. 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 2012 Posts: 56 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2012 Posts: 56 | My thick, disgusting mucous morphed into foamy mucous about 4 weeks post rad. It varies in amount but builds as the day goes on (I am about 10 weeks post rad now). I m hoping it will one day morph into saliva, as after the thick mucous, the dry mouth is the worst part of treatment so far for me.
The most helpful thing I have found so far is brushing my teeth and mouth (gums, roof of mouth, & tongue + teeth), carefully and gently, using my electric toothbrush. This removes the foam "coating" that builds up, until it build up again. The downside is that brushing the roof of the mouth and back of the tongue gags me, but I can live with that.
Swishing the mouth frequently with fluid seems to slow the buildup. Letting the fluid (water with baking soda, e.g.) sit in the mouth for several minutes, if tolerated, seems to be better for removing the mucous than just swishing for a moment.
DO check with your oncologist or oncological dentist before trying this as it may not be appropriate for your situation or stage of recovery. Good luck, and happy holidays.
Ed H, NE Ohio SCC BOT with lymph node involvement, HPV+, diagnosed 7/12 Radiation and Cisplatin
| | | | Joined: Feb 2003 Posts: 5 Member | Member Joined: Feb 2003 Posts: 5 | I am 11 years out and I lost most of it. The one thing that helps is lemon drops. Out of everything I tried lemon drops allow me to feel my own saliva. I suggest that for a good dripping mouth. he he he! | | |
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