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New to here #197702
12-16-2018 10:28 PM
12-16-2018 10:28 PM
Joined: Dec 2018
Posts: 4
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ngerecitano Offline OP
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ngerecitano  Offline OP
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Joined: Dec 2018
Posts: 4
Hi!

My name is Nick and I'm almost 2 weeks post treatment. It's been a roller coaster of emotions before, during, and after treatment. I impressed my doctors during treatment, being able to eat and drink normally and still taste food up until my last 2 doses of radiation. I took an extreme nosedive the weekend before those last 2 doses, becoming unable to talk, eat, or drink. I finished my treatment and 2 days later had to get a feeding tube put in. That was a week and a half ago and I'm still unable to speak for a full day and drinking even water is painful after a few sips. The mucousitis is really wearing on me and I have to empty a spit cup regularly throughout the day. It's been really disheartening to make it so far only to stumble at the finish line. I know it will get better, but it seems like it's taking so long to get there. I'm curious to hear if anyone else had a similar end to their treatments. Anyway, I hope you're all doing well and I look forward to connecting with some people who know and have been through this, same as me.

-Nick

Last edited by ngerecitano; 12-16-2018 10:34 PM.

-ngerecitano
Re: New to here [Re: ngerecitano] #197705
12-17-2018 12:57 PM
12-17-2018 12:57 PM
Joined: Aug 2018
Posts: 193
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ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
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Joined: Aug 2018
Posts: 193
welcome to a club no one wants to join! I"m a caregiver. I will say a couple words of advice: do what the doctors and people here tell you for they KNOW. My husband has fought against advice every step of the way in his healing and he is still bedridden months later. Find things to keep your mind busy, have things to look forward to. You can do this. It will get better.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: New to here [Re: ngerecitano] #197707
12-18-2018 08:12 PM
12-18-2018 08:12 PM
Joined: Sep 2018
Posts: 30
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VirgoMomof3Boys Online
Contributing Member (25+ posts)
VirgoMomof3Boys  Online
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Joined: Sep 2018
Posts: 30
Hello Nick! Wow that's quite a story. I'm sorry that you weren't able to finish strong like you were expecting. I'm doing my radiation treatments but I do know one thing that's stood out for me that really stopped me in my tracks which was my radiation oncologist told me if I 'ever' feel the need to go to a hospital, then to come back to the CCC affiliated hospital that I've received my care at. I've been chugging along but your story really shows that we're not out of the woods until well, a while and from your story I see what she meant.

Were they not controlling your pain adequately with your mucositis?

Last edited by VirgoMomof3Boys; 12-18-2018 08:15 PM.

Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: New to here [Re: ngerecitano] #197751
01-03-2019 09:30 PM
01-03-2019 09:30 PM
Joined: Oct 2013
Posts: 558
Hot Springs, Arkansas
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n74tg Offline
"Above & Beyond" Member (500+ posts)
n74tg  Offline
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Joined: Oct 2013
Posts: 558
Hot Springs, Arkansas
Hello Nick - I know you wanted to finish strong. Don't look on this setback at the end as a failure, you had a near perfect think going, LOTS of people would gladly trade places with you.

My 5 weeks of treatment went very well, only a little sunburn on side of neck. But the guy who had the treatment slot before me got burned up so bad he had to stop in the middle of treatment twice so he could heal up.

Then the mucositis arrived, it was brutal, so bad I would have to use lidocaine in the middle of a meal just to finish the meal. I survived on liquid protein shakes.

You will get there, just keep fighting day by day. Improvement probably won't be linear, some days you improve a lot, others you seemingly go backwards.

take care

Tony (just passed 5 years post treatment)


Tony, 62, non-smoker, aerobatics pilot, bridge player, swing dancer, building a house

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 rads end, taste gone, dry mouth, neck sunburn, some hair loss, mucositis & rope mucous
02/14 hair slow to return
03/14 mouth/throat tender/dry, taste little change.
05/14 taste the same, dry sinuses, irrigation helps.
07/14 sinuses some better
01/15 food taste about 60% returned, dry sinuses are worse in winter months.


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