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#191670 01-31-2016 11:01 AM
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I just end week number three of a six week radiation only treatment for base of Tongue cancer. It has become almost - no lets say it has become impossible to swallow anything solid. I have not had solid food now for about 5 days. I am living on either McDonalds milkshakes or DQ milkshakes with Protein added.

I have not lost more than about 6 lbs so far but expect the weight loss will begin to happen faster over the next two weeks unless I can get more of these shakes down.

The pain in my mouth is not that great, just the swelling from the throat makes it difficult. I don't know if this is because I have been having acupuncture through this process two to three times a week since the beginning of my treatments. I went on Saturday to have a acupuncture session, she seemed to have stopped the discomfort at the roof of my mouth, and gave me two pressure points in my ears to squeeze 4 times a day for relief.

So what is the worst part of this at the end of week three , the thick saliva. It is gross and difficult to deal with. I can not swallow the large mucinex pills anymore, now I am using Wal-Tussin from Wall Greens. It has seemed to work except not as well this morning.

I have heard different stories on how long it takes for the throat to heal and extra thick Saliva to stop. I would not mind hearing how others have dealt this this and how long after treatment it will begin to subside.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Nov 2015
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My husband is 8 weeks out now, has just now started trying to eat, gets choked, can't swallow large pills at all uses Robtussin DM. His tongue is still very swallowed. Lots of fatigue. Thick saliva has slowed greatly. Mucostis came back this week horribly. Now jaws and teeth hurt. Blurry vision and hearing problems. We are at MD Anderson now for our first check up.

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Eight weeks out ? Did he have chemo and Radiation or Radiation only and for how long. I was hoping for two to three weeks out. I was told when this all started the first two weeks you don't notice much of a change, you pay for it on the back end, feels like you are still having treatments for two more weeks.


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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Leonard,

Overall I would say you're doing well, and kept the weight loss to a minimum of 6 pounds. Doctors do get concerned with 5% unintentional weight loss from your pretreatment weight during a 6 month period, which is the biggest cause of treatment stoppage, and poorer outcome, and if continued, and may require intervention such as a peg or nasal tube, and others. Many factors influence the weight loss due to pain, swallowing difficulty, dry mouth, infections, cancer itself, physiological, etc, including cancer cachexia, which is difficult reverse, gain back, even with increased nutrition due to metabolic changes, is mostly skeletal muscle, and each need to be treated accordingly. I lost significant weight several times, over 120 my first round with chemo, 40 just with radiation, 10 here and there during other treatments, and took several years to gain back 50lbs.

Radiation effects start becoming more difficult from the 3rd week, and more difficult as time goes on, even up to 3 weeks post treatment being the worst.

As far as thick mucus, that's a result of the radiation to the major salivary glands, more so in the parotid, which basically kill thin mucus, so you're left more with the thick. Usually thick mucus starts subsisting two to three weeks at the end of your treatment when the other glands start producing more and or glands start recovering depending if spared, the radiation dose, and areas. Overall, it can take up to 2-3 years to recover, if not longer, plus radiation has acute toxicities, lasting up to 3 months, and long term, longer than three months that can occur months, years later.

To help thick mucus you can sleep on an incline, use a humidifier, keep hydrated, brush/rinse out mouth, a steam shower, usual salt water baking soda rinse, rinsing with seltzer, pineapple or papaya juice, even used diluted meat tenderizer.

I don't see mentioning working with a registered dietician, a Speech and Swallow Therapist, SLP, which I recommend. When I did radiation I had my mouth sprayed out daily in radiology, which helped mucocitus,and thrush, which are sometimes difficult to differentiate and occur concurrently, along with other conditions, including bacterial or viral infections, which need to be treated appropriately, and had extra hydration in radiology, in addition to being prescribed NeutraSal for Mucocitus & Dry Mouth, Nyststin for thrush, Magic mouthwash for pain in order to swallow, opioids.

OCF has a nice page to help you through the treatment process, and recovery, and recommend reading that, and if you have time, through the various blogs.

http://www.oralcancerfoundation.org/treatment/

Good luck, and if you have any questions, ask.


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






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Hi Paul,

Thank You for the reply. I am working with a Speech and Swallow Therapist at FoxChase Cancer Center. I see her again next week although I went to her last week when I found speaking to be a little more difficult. Again, i don't know if it is the acupuncture helping with this, but the speech problem seems to have subsided a bit for now. I am rinsing frequently with Baking Soda and salt, doing the stretching exercises and yes taking long showers with plenty of steam. I have the humidifier and a bed with the feature that keeps my head raised. Also sleeping allot more now. Not real thrilled the discomfort is expected to get worse from this week forward, but I guess it is to be expected. I only have had to take pain medication once so far. Monday begins week 4 of 6.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jul 2012
Posts: 3,267
Likes: 1
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I'm glad you're at a top cancer center, that helps a lot, and seem to be doing everything you can be doing. If the salt burns, you can cut it out, with your healthcare teams approval. Everyone is different with side effects, as are treatments, which chemo can compound, but see you're not doing any.

Good luck with week 4.


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






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Thank you again, also thought it might be helpful to share what I am doing and how I am feeling week by week to help others. Again, realizing everyone is different. I just know I am going hate Vanilla after this is all done.

Why do I say hate vanilla, not big on liking very sweet items, chocolate is too sweet for me. I have been sticking with Vanilla.


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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When my husband finished with his 35 sessions of radiation, his epiglottis was swollen even att the 12th week mark. We were told that if he had forced down a box of Ensure, he would have drowned. In fact, what happened was that whatever he tried to get down (in teaspoonfuls) would come back up after a couple of days. The RO prescribed gabapantin which helped a bit with the swelling. The most important thing, I would say, is patience and wait for the swelling to subside.

For the thick mucous, you can use a waterpik with warm water, a bit of magic mouthwash, the tongue scraper supplied, and put it on the lowest setting. It gets rid of the thick mucous quite effectively and makes your mouth feel fresh. It's a technique I picked up from this forum way back.

Hang in there, you will get through it. It can be frustrating at times but the discomfort does end.


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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I forgot about the pills. Not all pills come in liquid form. You might consider using a mortar and pestle to pound the pills into powder and put it in some applesauce. It is a nice way of getting it down. Of course, always check with the doctor to see if the med comes in liquid form. Doctors tend to forget your needs, so you MUST remind them of it.

I made my own applesauce once a week. I kept it in the fridge and it kept well. I sometimes mixed apples with pears, just to vary the taste.

There are also pill splitters available at your pharmacy or even on Amazon. I got mine at GNC health foods.

Hope this helps.


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.
Joined: Jan 2016
Posts: 55
OES Offline OP
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Twelve weeks after radiation the swelling was still there ?


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