#37979 01-02-2005 12:47 PM | Joined: Dec 2004 Posts: 11 Member | OP Member Joined: Dec 2004 Posts: 11 | Hi everyone: My husband had surgery June 15.He had neck dissection for cancer of the epiglottis. The dr. took out some nodes also. Had 35 radiation treatments. Finished that 2 mos. ago. He has a peg tube cause he cannot swallow anything without choking. On Friday of this week we are going for another opinion. I was wondering if anyone has had any reconstructive surgery done to allow you to eat more normally. Seems like his surgeon has signed off on him so to speak. Does not really answer our questions satisfactorily. He says everything is from radiation and it should get better. but we feel everything is not being done for him. He is up most of the night coughing and gagging cause he has so much mucus stuck in his throat that it takes a long time to cough it up. If anyone has any suggestions for us we would greatly appreciate hearing from you. Especially if anyone has had any epiglottis reconstruction. Have heard that it is available somewhere out there. thanks for listening. | | |
#37980 01-02-2005 04:26 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Nov 2004 Posts: 104 | Hi Rosie,
I had exactly the same problem with the mucous after radiation (did not have a PEG). My Doctors told me the same thing as yours and I too thought that they were probably full of ---- (thick mucous). It turned out that they were right and I was wrong. The nauseatingly thick mucous did get better and the gagging and retching stopped. It didn't happen overnight, but it DID happen. I really had to learn what the word patience meant. I know it is really difficult but HANG IN THERE, it will get better.
Peace Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
#37981 01-02-2005 04:39 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Rosie, welcome to the site. The thick mucous is a common problem after radiation. I used to wake up every 30-45 minutes and hit the bathroom coughing and gagging. Could only sleep sitting up in bed and still woke up every hour. This went on for a month or so and then started to gradually get better. I now am 10 months out from rad and generally sleep up to 6 hours through. So hang in there, it will get better.
I was on the peg also and had it removed finally in July, 5 months post rad. I had trouble starting to eat solids and my wife made me all kinds of foods. Found the best for me was poached eggs on light toast with lots of soda to help wash it down. Still use lots of liquids to wash the food down due to the salivary gland damage and resultant dry mouth.
From the sounds of things, your husband may be experiencing the normal post treatment symptoms, so I would be a little careful looking for a surgical solution to problems which may go away by themselves. However, there is no harm in getting a second opinion. There may be other issues which can be addressed differently. Hope all turns out well.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#37982 01-04-2005 05:17 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Rosie, I agree with everyone else that what your husband is experiencing sounds pretty much the normal course of issues after radiation. Make sure he is getting lots of fluids. Also, find some cough syrup with Guaifeneisin such as Robitussin. Be sure and put it in the tube, not the throat or be prepared for a blood curdling scream . The alcohol in it will surely feel like drinking fire. Sleep with a humidifier at night, rinse and spit that stuff out as often as possible. It should be a darker color now but gradually turn clearer and clearer and then diminish. It is caused by the mucuous membrane that was damaged by the radiation as it heals. You might have him sleep with the head slightly elevated, too. He should try and drink or "tube" at least the followingL body wt/2 to get the minimum ounces of water per day. It wouldn't hurt to even use pediolyte for the extra electrolytes and better absorbtion, too. Keep us posted on his progress. These are some of the most difficult times right now. Surgery to the radiated tissue areas this close to radiation would not be the best option. Ed
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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#37983 01-04-2005 09:21 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Nov 2002 Posts: 274 | Rosie,
I have not seen anyone on here that had epiglottis cancer. So, like everyone says, this should pass. The one thing you don't mention is if any surgery was done on the epiglottis. If it was damaged, by surgery or radiation, you definitely want a second opinion from a specialist. The epiglottis keeps food out of the airway and he may be choking due to a problem there. At 2 months post radiation, assuming no surgery other than the neck dissection, he should be able to swallow something.
Glenn | | |
#37984 01-04-2005 12:35 PM | Joined: Dec 2004 Posts: 11 Member | OP Member Joined: Dec 2004 Posts: 11 | Glenn: Yes he had extensive surgery. The Dr. removed his epiglottis and some lymphnodes. We are going for a second opinion primarily because he cannot eat. We heard of a surgery where the reconstruct the epiglottis with muscle or tissue from your chest muscle. So we thought it wouldn't hurt. He is getting more and more depressed. Thanks for answering. Rose | | |
#37985 01-05-2005 07:47 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Rosie My husband also had a problem sleeping because of mucus , we used a Yankeur suction machine for a while. Actually we tried 3 different ones,as the first two the health service people brought were not strong enough. No second opinion can hurt Rosie and depression is a normal occurance, maybe the Doc can prescribe something to help that. Take care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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