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#187697 01-17-2015 10:24 AM
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I realize this journey is not a straight path, and that everyone's circumstances are different, but just looking for some real-world POV about what to expect in the next few months.

Hubby (56) diagnosed in Nov, tonsillectomy and neck dissection. He's 60% of the way thru 39x radiation, and has 3rd and final chemo (cisplatin) next week.

His throat and mouth are incredibly painful, and there is a lot of goop, blood etc. It's pretty bad, but will it get WORSE thru the radiation, or has he pretty much reached "status quo"?

He's experiencing some loss of hearing in one ear, but also says the ear feels as if it's full of fluid. What has y'all's experience been with loss/recovery of hearing?

He's still able to sip/swallow water - will this ability remain, or will his swallowing become impaired?

Also, once radiation ends, how long do you continue to get worse before you start to get better?

Lots of questions, I know. Appreciate your perspective! THANK YOU!!!


Wife to patient with poorly differentiated, non-keratinized, squamous cell carcinoma in one tonsil. Stage 4. T2N2 with metastisation to three lymph nodes of the left neck.
Dx Nov '14
Tonsillectomy and neck dissection Nov '14
Chemo (cisplatin) & radiation started 12/10/14
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Tell the medical oncologist about the hearing issues before his next chemo. Cisplatin can cause permanent hearing loss.

At that point during the treatment my husband felt the same. Reading other posts tells me some people feel worse and some better. He is now post radiation and is still feeling terrible. We were told to expect to feel worse for a least a few weeks before the pain begins to lessen. He is swallowing a small amount of water.


CG of husband,50, history of smoking
BOT HPV+ and one node
diagnosed 11/14
8 chemo and 36 radiation treatments
2016 40 HBO dives, removal of two teeth
one year scan clear
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MrsChickenPam, Sorry you have to join this group but all the same, welcome to you. I'm sorry that your hubby is suffering from the side effects, unfortunately, these will get worse, even after radiation is over. You really MUST let his MO know about the problems he is having with his hearing. It is probably due to the Cisplatin. The doctor may decide to change his chemo or not give him the last cycle if the hearing problems are bad. The loss of hearing can be permanent.

Depending on how long he can continue to sip and swallow water, he may retain his ability to swallow even to the end of treatment. If he reaches a point when he cannot swallow, let it be for now but have him continue doing his swallowing exercises so that the muscles do not become atrophied.

If your have further questions, feel free to post them. There are lots of forum members who can give you some suggestions.


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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Hate to say this but when I was put on Cisplatin I was told up front the potential for some loss of hearing but once I would realize it the damage would be done. My hearing issues, mostly High pitch/frequency issues, stuck with me, hearing aids have helped some with it. Definitely discuss it with doctors.
Best wishes and Prayers!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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He did mention it to his doctor, but they're forging ahead. Last chemo (#3) is tomorrow. I honestly haven't noticed that he has lost any hearing. The TV isn't any louder, and he seems to hear everything I say just fine, so if there is loss, it seems to be minimal. I'd rather have him alive/healthy with some hearing loss than delay/change the treatment path.

Thank you all for your encouragement and information!


Wife to patient with poorly differentiated, non-keratinized, squamous cell carcinoma in one tonsil. Stage 4. T2N2 with metastisation to three lymph nodes of the left neck.
Dx Nov '14
Tonsillectomy and neck dissection Nov '14
Chemo (cisplatin) & radiation started 12/10/14
Joined: Nov 2015
Posts: 18
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Mrschickenparm,
How's your husband doing? How are you doing?


Wife of a stubborn survivor
Scared of the unknown
Scaredwife #192222 04-12-2016 11:03 AM
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Thank you so much for asking!

He's doing pretty well. Just over a year post-treatment. All scans clear. Getting healthier every day, but it takes a LOT of work.

LOTS of issues from radiation damage - some life-altering.

Swallow - he basically has a dead zone in his throat where the muscles no longer work and the nerves are dead. Food goes down by gravity. He occasionally chokes - I broke one of his ribs doing a heimlich on him once. He has had some swallow tests and all Drs have advised that he is aspirating and to just stop eating and use PEG tube only. He is refusing as food is such a joy to him and one that we thought would be taken away. He's careful, and part of his training regimen is to increase his lung health. I would make the same decision in his shoes.

Hearing - the hearing loss was fluid buildup due to radiation damaged tissues. Had tubes put in and hears very well now.

Dry mouth - he has ZERO saliva and probably never will. Consequently, he wakes several times a night to drink water. So, his sleeping is VERY interrupted. Recently had a sleep study and will get results from the neurologist in a few weeks.

Taste - sweet is gone, but everything else is there. Some foods go down easier than others (veggies good, meat not so much). His tissues are very tender and can't really handle anything acidic, so wine is out, sadly.

Overall health - his blood counts continue to be low, but cholesterol, blood pressure, sugar, etc. are all MUCH BETTER than before he got sick due to losing 90 pounds. He was VERY WEAK after treatments, could hardly walk 50 yards. Can now run a 1/2 mile and his goal is to be able to bench press more than our 17yr old daughter LOL.


Wife to patient with poorly differentiated, non-keratinized, squamous cell carcinoma in one tonsil. Stage 4. T2N2 with metastisation to three lymph nodes of the left neck.
Dx Nov '14
Tonsillectomy and neck dissection Nov '14
Chemo (cisplatin) & radiation started 12/10/14

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