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Joined: Feb 2012
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So im finished with radiation. Thank the lord. Unfortunately to most people that means I should magically wake up fine.
The most major and painful side effects i'm facing are the tip of my tongue feels raw and almost cracked and the back of my tongue feels as though it got burned. If these two symptoms would go away I'd be all set. I'm not eating normally by any means. I'm living off boost shakes with no feeding tube, thank god, and I'm having some difficulty swallowing but mostly it feels like my soft pallet is very sensitive.
Did anyone else expierence pain when trying to speak?
It wakes me up at night as well and I can't tell if this is the problem or not so please share you're thoughts.
At night I'll wake up in pain from the tip of my tongue. My entire mouth will be dry and the tip of my tongue will feel like its cracked. So I have to use chloroseptic spray on it first which hurts like hell for a few seconds then deadens the pain then I use the magic mouthwash. 4 hours later or sooner the same thing happens. Have I cracked my tongue while it was dry? Any advice to help heal my tongue so I can at least talk would be most welcome.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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My husband had really bad sore's on is tongue during treatment. The doctor gave him lidocaine to put on it and it healed up fine. He is now experiencing an extremely sore throat.


Callie, 24, cg to husband, Don, 43, smoker 20+ years, quit smoking 12/11! 3/09- spot on tongue, biopsy-. 3/10 biopsy-. 10/14/11 biopsy+. Surgery to remove front half of tongue and 32 lymph nodes (contained in one node).. 12/09/11. 6 weeks rad tx 2/1/12-3/20/12. Trach removed 4/12. Still using peg.
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Stay hydrated. Plenty of water. Radiation treatments will continue to change things in your mouth and throat. It's different with everyone but expect changes frequently and just stay in tune with those changes.
Steve


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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Radiation, I think, was the worst part of treatment. The complete lack of saliva is really bothersome for the first while. It is unfortunate but I have gotten used to the Sahara desert feeling in my mouth when I wake up know. I have tried almost every saliva replacement solution I can find but none work for overnight when things are this dry.

I'm on my second recurrence now ad am about 6 years out from my radiation now and it was a long and hard road to feeling more normal after radiation. I was radiated during my first round of treatment and I think was the harder recovery than the second set of treatment they did with chemo only.

Recovery is a marathon not a sprint. What others expectations are for your recovery don't matter.


Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
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The actual radiation process was the worst for me. Luckily, I didn't experience any extreme side effects. Food taste changes and sensitivity to spicy and hot foods was the lingering effect.


Left lateral tounge squamous cell carcinoma. 30% tounge removed and neck disection Dec 2009. Tumor was stage 3, nodule count out of 32 samples was zero (T-3/N-0). Radiation theraphy.
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Thank you for your info about some after effects some of you encountered with radiation...My mom's very elderly...but has been very healthy all her life..no meds needed...no "conditions" until HPV about 11 yrs ago...took 2 yrs of little mouth surgeries & she was cancer free for 9 years...She lost my dad last year--were married 64 years & 15 minutes!!! No joke...in 3 months time she started dropping weight...and the cancer had it's way with her. She's doing Eribitux..it took care of the swelling of the tissues in her mouth..but now, 4 new areas...hole in her palate from surgery--on the sinus floor & now 3 more spots & in chin. She's terrified of doing radiation so I think she will not go thru with this. Has the PEG tube which is a little miracle in itself.... Just needed toshare...and thank you all for your honesty and compassion and incredible strength. Jane


caregiver to 87 yr old mother,HPV +,Using Erbitux w/little success,Hole in palate, & 3 new areas..2 in cheek, now tumor in sinus. See Rad Dr soon & will cont. w/Erbitux. PEG tube in April. Macular Degeneration--chemo finished off her sight. Mom passed away Fri nite...8/24.
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Maybe using a cool mist humidifier in the room where you are, or in bedroom at nite?? And what about the new mouthwash, alcohol free & very gentle for dry mouth...Biotene? Jane


caregiver to 87 yr old mother,HPV +,Using Erbitux w/little success,Hole in palate, & 3 new areas..2 in cheek, now tumor in sinus. See Rad Dr soon & will cont. w/Erbitux. PEG tube in April. Macular Degeneration--chemo finished off her sight. Mom passed away Fri nite...8/24.
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Radiation. Thank goodness for it and damn it too. I think that Steve is right when he said "Radiation treatments will continue to change things in your mouth and throat". That has certainly been the case with me. I got some great advice here about rinsing my mouth with a mixture of warm water, baking soda and salt. I found it to be very soothing. Just keep your mouth as clean as you can. Humidifier is a great idea for overnight too.
I am three years out from radiation and, although you may not find this particularly encouraging, I still have sores in varying locations most of the time. When they "flare", I go back to softer foods, rinse my mouth often and talk less.
I had a devil of a time with radiation and talking was super painful etc...that went away with me. I have experienced some periodic, location specific swelling of my tongue as well, but that tends to pass fairly quickly.
You may find that your neck and into your shoulder and upper back gets sore and stiff, and I have also experienced vertigo. Am seeking physio for stiff and sore neck and the vertigo only happens once in awhile now.
Hang in there! It takes time and every journey is a little different, but life gets good again. All the Best.


Lori - SCC R-Tongue, T1 / R-soft palate, T2 N1M0
Age 46 at DX
RT June - July 2009

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