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#159284 12-21-2012 11:00 PM
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Shelby Offline OP
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I've been having constant painful ear aches everyday and night for the past two weeks and I know it's probably from the cancer but has anyone ever experienced this? If so was there anything that made them better? I don't like taking my pain meds if I don't have to and I've been taking Tylenol but that doesn't help so I've been taking pain pills when the pain is at a 10. Also, I'm having my partial glossectomy in a few days and was wondering when you had surgery, did they go away or is this more serious than I think? I've been researching and can't find out why we get them so I don't know if it should be a big concern and call my dr.
Thanks guys smile


Shelby, 28 yrs old, stage 3 tongue cancer, non- smoker, not HPV, 12/27/12 partial glossectomy and neck dissection, 1 lymph node positive, Chemo and Rad 5 days a week, 32 treatments, feeding tube in, finish treatment 3/22/13 smile back to normal basically
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It could be the tumor or swelling pushing on the nerves causing you to hurt. Dont be afraid to take your pain meds, thats what they are for. If its not strong enough, call your doc and ask for something stronger. Being in pain is not productive to the patient so dont suffer needlessly.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Hi Shelby,

I experienced this. My ENT said it was normal as everything is connected. Could be 'referred pain' My back tooth on the other side from the tumor hurt like crazy as well - I thought that the cap had cracked. (It hadn't)

What sort of worked for me was a blow dryer set on med/high blowing in my ear. I know that it's an old remedy, but it was better than pain meds. I don't like narcotics either, but they helped a great deal - especially later. Christine is correct on this!

If you are concerned, you should call your doctor. They should be more than willing to examine you again and tell you if there is a problem that needs attention sooner than a week from now.

I was moved to the top of the surgery list when I voiced my concerns.

I was terrified that the tumor was growing down my throat and into my ear. When I came out of surgery I was relieved to know that they did not have to split my jaw and go down the back of my throat to get all of the cancer.

And yes - the pain goes away eventually after the surgery. I still get a twinge now and again, but nothing like before the 'exorcism'.

It's funny what makes you happy once you go through this journey.


Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
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My husband had earaches, both before the treatment (the cancer was causing it), then after his first radiation session and his first chemo the next day. It was so bad they had to give him an oxycodone. The RO explained that it was probably the result of some swelling after the Rx. Then over the weekend, the earache went away. John was not taking the codeine he was given because he felt it was not doing much for the sore throat. The RO suggested he try as it would 'take the edge off' so that he could cope better.


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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Shelby

I had similar terrible earaches for a year, constantly misdiagnosed, before a CT scan showed cancer. The good news is that the surgery should take care of that earache since it is often caused by the tumor growing and pressing on a nerve. The nerve interprets that as an earache.
At 19, you have been bombarded with advertisements and warnings about pain pills during your formative years (unlike mine- when it was better living thru chemistry), but it's really different for cancer patients. Please don't wait until 10 level, you should be starting at 5 or 6 level. When the pain pills are for real physical pain from cancer, it's not the same as the "pain of living" that abusers and addicts try to treat. You will not see tragic stories here at OCF of people becoming addicts, because we all want to get off them as soon as we can, BUT you need to start getting effective pain control asap to help you in your battle.
EAT UP A STORM IF YOU CAN THIS CHRISTMAS, before the surgery,
Everything and anything, don't worry about calories etc, you will lose weight during TX. When you go in after Christmas for your surgery, in the ICU, take every morphine shot they offer. The less pain you feel, the faster you will recover.
Once I was diagnosed and they found out the cancer was causing the earache, they immediately prescribed percocet every 4 hours.
Be sure to mention to the surgeon that you have been having earaches but as far as I know, earpain is a very common side effect of this cancer. As noted in some posts, the medical term is "referred pain", which in plain english means it's not really your ear at all, but the tumor.
So sorry to see someone so young posting here.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I agree that it could be the tumor growth or even a new tumor. It happened to me. it was from a neck lymph node presding on a netve that was eminating shooting pain up to my ear, and used a Fentynal patch to control it, but there are other medications down the ladder, like codeine, that can be used first. My pain eventually went away from the radiation shrinkage. Pain also interferes with the body's healing process, inflamation healing, which you don't want after surgery, and effects your QOL too. I suggest calling your doctor also, and maybe even see somone in pain management, if your facility has one, to get it under control, and speech and swallow therapist who can give you exercises. Good luck with the surgery.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Shelby Offline OP
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Thanks guys! This really helped me a lot! I had some left over pain meds from my biopsy and ACL surgery I had in the past so I've been using those now and feeling a lot better. I'll have to try the hair dryer trick too! Just in school they're always like if you take too many pain meds you'll become a druggy and addicted and they're bad for you! But I guess thats more of a scare tactic haha! Thanks for the info about the "referred pain" and the tumor possibly pushing on a nerve. That makes a lot of sense. I'll be sure to tell my Dr. though when I go in for surgery. Hope y'all have a wonderful Christmas! I know I'll be stuffing my face! smile

Thank you for all your generosity and help!


Shelby, 28 yrs old, stage 3 tongue cancer, non- smoker, not HPV, 12/27/12 partial glossectomy and neck dissection, 1 lymph node positive, Chemo and Rad 5 days a week, 32 treatments, feeding tube in, finish treatment 3/22/13 smile back to normal basically
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Shelby,

I had bad neck/ear pain before this last round of treatment. My GP prescribed Gabaplatin (sp.) AKA Nurotin (sp.)this is not a narcotic, it sothes he nerve linings or something but at low doses I never felt anything other than the pain going away. It was fast too. I took my first pill and had relief in 1/2 hour.

Later the doctor said I could up the dose but when I did that it made me dizzy and I couldn't focus my eyes well so I went back to the low dose.

After a few treatments of IMRT the pain started to go away entirely although it was soon replaced by the normal radiation related pain sources you will see discussed here often.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Neurontin is actually an a medication used for seizures. Ive used this as well. It worked wonders for me in helping to stop the intense stabbing pains I would have in my face. It also comes in liquid form which I used.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jan 2009
Posts: 1,844
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It's important to understand that the majority of your cranial nerves (the 12 paired nerves that make up the nerve network of your head and neck area) terminate in the Trigeminal Nucleus in the brain and is why "referred pain" is common for Oral Cancer patients and one of the reasons that tooth pain is so intense and often seems to radiate through the entire area. FYI, Trigeminal Neuropathy is one of the most painful conditions known to man with very little treatment options, and happens to be the epitome of Head and Neck referred/neuropathic pain.

Now understand that neuropathic pain is generally different than referred pain, which is pain felt in a location different from the origination point. Neuropathy occurs when there is actual nerve damage, or an interruption in the nerve impulses, which wouldn't generally be caused by the tumor pushing on the nerve, only if it invaded the nerve i.e. Perinueral Involvement or PNI. Although generally speaking PNI results in numbness and loss of feeling which is why facial numbness is a symptom of OC. The majority of Neuropathy experienced by H&N cancer patients is caused by resection (surgery) or damage from radiation.

Generally with nerve related pain (which Neurontin/Gabapentin would be prescribed for), will feel like a burning sensation or crushing feeling . If you are experiencing referred pain from the tumor "pushing" on a nerve, it's just going to be discomfort to intense "pain", which you would want to use a narcotic for. Pain should always be controlled at a 3 or under, as pain is the enemy of healing as it puts the body in distress, so it's important not to think about addiction issues, just pain management.

As someone as "experienced" as myself with pain meds can kick them, anyone can in my humble opinion (not that I believe I can in any way be considered humble).

Anyway talk to your Dr and or Pharmacist and try to articulate what type of pain you are experiencing so they may help diagnose which med should work best for you.

Keep your chin up and keep looking for answers.

Eric

Last edited by EricS; 12-23-2012 12:11 PM. Reason: always spelling

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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