| | Joined: Dec 2018 Posts: 5 Member | OP  Member
Joined: Dec 2018 Posts: 5 | 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
| | | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2018 Posts: 345 Likes: 8 | 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 58 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
| | | | | Joined: Sep 2018 Posts: 71 Likes: 1 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2018 Posts: 71 Likes: 1 | 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
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | 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, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
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