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Joined: Jan 2016
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Thought I would share an update. Today was two full weeks post radiation. I am Not had solid food in over a month. Until the mucous in my mouth goes away I do not even want to try. I am having great success with large amounts of water taking big gulps, the shakes and instant breakfast no problem going down. Pain is not a big deal just discomfort. Weight loss has stableized it seems, have not lost too much recently. Tightness in my jaw near where the tumor was/is I continue to stretch interesting how uncomfortable when I yawn, it pulls on my throat, Jaw mouth. I continue to stretch but it goes back to the tightness. I have not seen much about this topic if it is remains this way forever or you just get used to it. Of course the mucous is the biggest problem today. Entering three weeks post radiation, I hope I am one of the lucky ones that this ends for soon.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jan 2006
Posts: 756
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Leonard, fortunately I did not have the problem with the mucous so I don't have any first hand knowledge of what to do, however, some OCF members recommended seltzer water. I found a post from June 2012 by Charm2017 talking about this. Charm was a very knowledgeable and helpful OCF member who passed away a few years ago, but his posts contain a lot of valuable information. Hope this helps. Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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As discussed, the thick mucus or rope mucus mainly goes away 2-4 weeks after radiation treatment ceases, when the saliva glands, mainly Parotid, starts producing more thin saliva, which radiation mostly effects, and the two other major salivary glands, and hundreds of minor salivary glands in the mouth and throat compensate for the loss, and a reason why we have more thick mucus until then. IMRT is designed to be salivary gland sparing, and the radiation dosage, less than 30Gy, Volume, less than 50%, is usually planned so they may recover, and in some trials, are not radiated or only one side of the head and neck instead of bilaterally depending on varying factors.

Treatments, including chemo, have acute, less than 3 months, and long term toxicities, longer than 3 months, and It may take up to 2 years to fully recover from some, like salivary glands, although now at 6 years with various treatments I still have some that are on going, dry mouth, others new or being newly addressed, but can say it does get better, and most things will be a blur as more time goes bye, and felt differences at 3 months, 6 months, 1 year intervals maybe that coincided with my doctor visits/scans.

As far as thick mucous, I have tried a number of things, through several of my treatments and after treatments. Milk does not cause thick mucous. Its enzymes replicates saliva, coats the mouth, gives a feeling of such. I couldn't drink milk, ice cream, even yogurt, for years, since the lactic acid burned my mouth, plus having altered sweet taste.

Sleeping on an Incline
A humidifier as mentioned
A warm shower
Hot soup
Drinking often
Rinsing with or drinking pineapple, papaya juice, now I drink beer occasionally!
Rinsing with brewed tea
NeuraSal, a prescription rinse which helps with mucocitus and dry mouth
Having the radiation center spray my mouth out with saline solution
Brushing often, tongue, gums too, gently with bristles softened with warm water
I've only used a suction machine in the hospital
Oral sponge brushes to get in the mouth, get out thick mucus, brush teeth with


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: Jan 2016
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As always thank you for the updates, I hope they help others as well. There are some new ideas here to try to get my mouth clear. This morning I had another challenge I decided to eat a prune to help and had some fiber added to my morning shake. The prune was the first solid item I had eaten in over a month. My stomach was making some very odd noises and bubbling. Actually for the first time in a week, I am not feeling so wonderful. If Paul and others are correct this mucous will magically disappear in one to two more weeks. That will be wonderful.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Oct 2012
Posts: 1,275
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Leonard, the tightness in your jaw could be a sign of trismus. There are varying degrees of trismus. Do you have a dental department in your hospital? The doctors there can advise you about trismus (if indeed that's what is happening). There is a contraption called Therabite that can help stretch those muscles.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Thank You Gloria, never heard that term before, reading up on it now. The the exercise the speech therapist has me doing since before treatments began including the jaw stretching and three finger stretch as mention on the page with information about this condition. Just never heard it called that, Learn something new every day, almost.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Nov 2013
Posts: 104
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Unfortunately, you cant rush the healing process. I thought as one of the younger patients (38yo at the time) I would breeze through my treatment. It was a solid 6-8 weeks post treatment I think before I could start working half days at a desk job.

It takes a loooong time for your saliva to thin out a bit, the radiation continues to do damage for a number of weeks after the actual treatment stops. Then finally you start to heal.

I would say 2 years post treatment I can eat some small amount of dry foods before needing a drink. I can sit at my desk without a drink no problem for hours on end. Flying is a bit different. I need a bottle of water. Also at night I wake 1-3 times depending on relative humidity and need a drink.

I would say the jump/timeframes in differences between functionality of the salivary glands are around 3 months out, 6 months out, a year out then 2 years out.






Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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Thank You Brian, here is hoping you are wrong on the time table for the mucous to go away. I expect there will be some other challenges with the dry mouth, I just need you to be wrong in my situation on the mucous. This is week three so I guess we will see how it goes by the end of this week. It is beautiful out this week on the east coast. Looking forward to getting some fresh air this week outside.

I know everyone is different, I am back at my desk working more about half a day but i have the luxury of working from home. I admit there are somedays I can't stay at my desk and night times are uncomfortable.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jul 2012
Posts: 3,267
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I wouldn't like for you to set yourself up for any disappointment, but there are no right or wrong answers as far as each persons recovery time nor are there any guarantees, and reason I said, it "mainly" goes away, as far as the ropey mucus. I'm 5 years out from my first radiation, although 6 years from my first chemo, which was worse, and still have thick mucus, but it's not the ropey mucus it was right after radiation, even chemo, that needed rolls of paper towels, suctioning, medication, trial and error as far as what worked for me. Besides the time frames, there are many other factors that influence ones recovery, at least ones I know about, that may need to be looked into, some with your medical team, to help maximize.

Try to take one day at a time, each accomplishment as a giant step, at least I try to do, sometimes lol, even though at times it seems like I take a step backwards, but it does get better, and been through this many times before to know.

Good luck with everything, and keep up the good work, and posting. It probably helps more people than each of us know.


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: Jan 2016
Posts: 55
OES Offline OP
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Posts: 55
I think I am going to be disappointed and frustrated if this does not clear soon, I need to get back to work full time and have several projects that I need to travel outside the country for. I want to get back to eating foods again. I have tried putting certain foods into my mouth, what a bad experience that was, I guess I tried too early, everything is so dry and sticks to your teeth. I will keep trying until I can get past this and some sort of normal.

For my treatments, I never had Chemo I had radiation as my only treatment.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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