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For an epiglottis that is not functioning, the SLP gets the patient to take a sip of the fluid, then hold his breath, and then swallow. My husband was asked to do that several times during his swallow test but he could not so it (his problem is a lot of scarring as a result of radiation). I remember reading that this is a technique Brian Hill uses and it has become like second nature to him. But I can't remember where he put that post. A search may turn it up.


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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Thanks Kim. I've been to hell and back, but I have it good now. I eat by mouth, but I still have my peg tube, not giving that up, being I had some sort of treatment for my 7 recurrences the past 4 years, and used the peg either solely or to supplement my diet. I was lucky, although I had radiation 5x, mostly left neck, 5 neck dissections, not effecting my swallowing too much, work around some problems. although the initial IMRT did like most everyone, but most of my problms were chemo related, although my vagus nerve was removed in October, along with my carotid. and was aspirating, had pneumonia in the hospital. Later I did a swallow study, and found if I turn my neck to my lett, look down, I don't aspirate. I was NPO after my initial chemo in 2009, darn almost two months only IV, no nutrition, and was hospitalized though 2010 for 6 months, lost 110lbs, and have come a long way since. I take one day at a time, and tackle each problem one at a time, easier said then done sometimes, each day is different, but I'm ok, but I'm no happy sap to cancer either, other things yes lol, but never cancer, and like it that way. I seek revenge, and living is the best revenge. I'm not ready to raise the white flag, and think of kicking cancers tail each day, keep up on how, see my doctors, all 8 of them lol, and hope for the best. That's how I get through, survive.

All the best.


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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My epiglottis has had issues for 5 years and I had aspiration pneumonia from about Thanksgiving that just cleared up about 3-4 weeks ago. I aspirate about anything that goes into the mouth these days along with sinus drainage and saliva.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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"OCF Canuck"
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If your dad is being fed via peg (NPO), chances are he is having some reflux of some sort - otherwise there would be nothing to cause aspirational pneumonia.

Even with first time rads people aspirational pneumonia is very possible (depending on where rads is aimed) Ideally I would seriously look into finding out what is causing it. If there is nothing going in from above, something must be coming up from below...

There are meds that can be prescribed for this to prevent reflux.
And it really may simply be about changing the speed of his feeds and how and when they are delivered.

hugs.



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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Patient Advocate (old timer, 2000 posts)
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In addition to the reflux, it could be the volume and timing of the feedings that can cause aspiration. Maybe see your medical team to assist with that. I also sleep on an incline, so that may help also, and don't lay down until 2 hours after a feeding, do the feeding sitting straight up, not while laying down. Hope this helps.


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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My husband hasn�t swallowed since his surgery nearly four years ago. I recommend an adjustable bed for your dad. Sleeping propped up is a great help in preventing pneumonia. Also, he needs to keep his mouth clean. Tim cleans his mouth twice a day, spending about 20 minutes brushing, scraping the tongue and rinsing with non-alcohol antibacterial mouth wash.

The not eating is very hard on me. I miss going out for special occasions and turning down invitations for events that include meals. So far he has not travelled by air, not wanting to have to deal with the TSA and lugging cans of Jevity. You are absolutely correct that it depends on the individual�s outlook. Tim�s odds were not good, so we are both grateful that he�s still around and functioning almost normally.

Susan, caregiver to husband.

Joined: Mar 2006
Posts: 90
Kim S. Offline OP
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Thanks all. My Dad was doing ice chips via the swallowing therapies directions and we thought doing quite well. She said it was only thing safe for him to try. It could have been caused by any of the things that you all mentioned.
I understand Susan completely what you are saying about the not eating. The isolation for my Dad is unbelievable. He feels that he is only existing not living. We try to help him we have our pastor come and talk to him as he will not talk to a therapist. He is on medication for the anxiety/depression but it only helps so much. I dread a holiday when the entire world will celebrate around a meal and we try to figure out how to handle it. I just wish the doctors would have prepared us for this.
The therapist think she can get him to be able to take a couple of bites eventually using the technique that Gloria mentioned but not sure about that now. Why bother if the risk of pneumonia is so high and what is the point. She said at least he could try to participate with the family but she implies getting him to be able to take a couple of bites of applesauce may take months of therapy if it works at all. They call that taking a couple of bites for "pleasure".
The ultimate decision of how to go forward is my Dad's but we do not know how to have the discussion as he gets so upset about the topic so quickly that the discussion just ends.......


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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Kim, I just sent you a PM.

How long has your dad been hospitalized, and does he remain so? IS he expected to return home in the near future?


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Mar 2006
Posts: 90
Kim S. Offline OP
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Posts: 90
Bart
He is home now and has had no fever for a week. Each set back takes a tole on him as it does for all head and neck cancer patients. He has never been a very sick person during his life. In fact I can not remember him ever having a fever until we began this journey....thank you .kim


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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Dear Kim, my husband is unable to swallow as a result of scarring. We used to celebrate every New Year's Eve with friends; when New Year's was approaching this past year, he was quite upset because even though he enjoys the company of his friends, he also felt he did not want to sit at the dinner table while everybody ate. Finally we told our friends that we would be there in the afternoon so that we could spend a few hours with them, then we left and went home just before dinner. It was a compromise but it helped lift his spirits.

I also spoke to our friends before the event about the need to socialize in another way, without involving eating and drinking. They understood and were willing to make the adjustment.

BTW, an ENT or a radiology interventionist might be able to carry out a procedure called CARD or TREAD which involves putting a stent in the esophagus. There is an RI who is willing to try that out with my husband but we have to wait since John is in a clinical trial. I have a couple of articles that describe these procedures, if you PM me your email address, I will send the links to you.


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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