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#161861 02-20-2013 08:36 AM
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John is in his sixth week post treatment. He has been making an effort to swallow. Initially, the thick mucous in his throat made it almost impossible to swallow even water -- he likened it to drowning. Now that there is a bit less mucous (depending on the day and the time of day) he finds that his throat is very sensitive and it makes him cough if he tries even a teaspoon of tea. We have tried tea, ice chips, papaya juice, pineapple juice and we just can't seem to get past the sensitivity. He has even become sensitive to the flat club soda which he has been using since Day 1 of treatment (we will try the low sodium variety today). Is there anything else that we can try? Would manukha honey help?

He is seeing his RO next week, maybe I should ask to have his swallowing assessed?




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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Milk worked better for me than anything else. NO fruit juices, no tomato or vegetable based juices -- all have too much acid.
Plus milk is thicker than water and is actually easier to swallow.
keep trying things until you find something that will be his "go to" item for a few weeks.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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Manuka honey or high quality organic honey may help in healing, but for me the sugar content still burned, even milk, which has lactic acid, which can cause sensitivity, but many find it helpful. I also used organic aloe Vera juice as a swish and swallow, as well as organic virgin coconut oil as a swish and swallow, both which have healing properties. Have the doctor check for any infection like thrush, which can go to esphogus, mucositis, which can effect swallowing, pain.

Avoid acidic food, as Ingrid mentions, spicy, salted, sharp textured or anything irritating. Basically it's a bland diet. ChistineB has a post for easy eating foods.

As you mention, the swallowing can be assessed with a modified barium swallow test, usually done by a radiologist, doctor, and speech and swallow therapist.


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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A swallowing study would be a very good idea! A patient can face major hurdles trying to relearn how to swallow correctly. Some can aspirate (fluid going into the lungs) which is what the patient must avoid doing, its very dangerous. Check with your treatment center, ask for a barium swallow study from a nutritionist or speech pathologist.

Here is the link for foods which are easier to eat.

Easy to Eat Foods



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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gmcraft Offline OP
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Thanks for the suggestions, Ingrid, PaulB and Christine.

Today the Home Care nurse suggested that the sensitivity may be the result of the effect of radiation on the lining of the esophagus. She recommended using thickening powder with whatever that John can drink. We will give it a try.

I worry about aspiration too, so will for sure press for a swallowing assessment when we see the doctor next week.


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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gmcraft Offline OP
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Update after seeing RO:

Today starts the eighth week post treatment. Yesterday we saw John's RO yesterday and having had a look down John's throat, the doctor told us that it was still quite swollen. This, of course, means the esophagus is made narrower; hence, John's difficulty in swallowing even more than one teaspoon of water at a time.

We discussed the need of a swallowing assessment and the doctor felt that at this point, an assessment would only show that John can't swallow because the swelling hasn't yet subsided. The RO's suggestion is to wait until the next visit, in six weeks. He believes that as the swelling goes down, the swallowing will get easier unless scarring occurs, in which case, he will make whatever decision he will have to make at our next visit.

The doctor recommended continuing to practice swallow but not to overdo it as there is the possibility of the "silent aspirant" -- which is, due to the rawness in the throat post treatment, the patient may have temporarily lost the ability to tell if whatever he is swallowing is going down the wrong way, and that can be very dangerous.

I thought I would share this as I am sure many people, like us, are unsure about when we should become concerned about the swallowing and how far to push the swallowing practice.



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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gmcraft Offline OP
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Just to clarify. Many people are able to drink and have soft food maybe two or three weeks post treatment. It only goes to show that different individuals may have different outcomes. To those who have to wait a bit longer, don't be discouraged. There may be a perfectly valid reason for your difficulties. In fact, John's doctor was amazed that he has made so much progress.


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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Gloria, sorry to hear your husband is having some problems with his swallowing. Im glad you thoroughly explained what his doctor advised. It sounds like a swallow study is not always an accurate assessment. In cases like what your husband is going thru it needs to be handled with extreme caution.

Boy how everyone is different! Some can eat and drink all the way thru and barely have any problems at all while others have trouble from day 1.

Best wishes to your husband with his continued recovery! You are a great caregiver who is really on top of things! Hope you take some time out of your hectic day just for you too.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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gmcraft Offline OP
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When John saw his oncologist last week, the doctor prescribed Gabapentin to help with the sensitivity in his throat and what the pharmacist told me was neuropathic pain. The medication took a week to start taking effect. Today, for the first time in four months, John was able to swallow six teaspoons of Boost without coughing his lungs out. I am soooo relieved. I firmly believe that the swallowing will just get better with the passing of every day.


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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Hopefully... tell him to yawn when he can too it stretches his mouth and throat muscles... fun wow!!! ;o)


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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