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DAD 3 MONTHS OUT OF TREATMENT-BAD JAW PAIN

nicki74
Posts: 55
Joined: Feb 2010

hello everyone, my father has been out of treatment for about 10 weeks, but is still in a lot of pain, under his tongue and shooting pain on his left side of his face, which goes behind his ear at time.. the pain gets so bad, about once a week it literally brings him to his knees in tears.. breaks my heart!... he did get about 8 biopsies done and they came back no cancer AMEN! i even think he ENT was shocked, but I thanked the big GUY upstairs! he was diagnosed in february with an advanced stage 4 tongue cancer.. he received 2 rounds of induction chemo, followed by 3 rounds of chemo along with 35 rounds of radiation, eeek.. so the doctors did explain to us that he had a very aggressive treament for a very bad cancer.. ugh just hate that word!.. he was treated at Rush in Chicago, which I am very happy with the team of doctors.. i just wish someone could tell us what to do.. he is still on the fentanyl patch, and now takes the norco.. he just wants to be back to work, on his bike and off the meds.. has anyone experienced this pain? can anyone give me some words for him.. he is getting depressed and moody, which i cannot blame him...

this website has been God sent! thank you

nicki

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Nicki,

Sorry to hear your dad's suffering. I'm one of the lucky ones - my pain subsided pretty quickly. Glad to hear the scan was clean for him. What did the doc say about his pain? Some folks suffer nerve and/or muscle damage from radiation, is that the case? I sometimes get a twinge in my jaw - my doc said it's normal, and I might want to try to stretch it from time to time. It's understandable he's depressed and moody - at ten weeks out, you expect to be on the mend, not still in great pain. Hope he gets some relief soon.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Nicki, Good to hear from you again.

On your Dad's pain, the irregular and shooting pains are most likely due to damage from Rads & Chemo and should subside though 10 weeks out, pain should be starting to dwindle. Some say it is nerve damage (neuropathy). Some people are using medical marijuana with very good results and acupuncture maybe worth a look.

Not long out of treatment I was in a lot of pain and as it turned out in a deep depression. They called a psychiatrist in and he took me off the Morphine, Vicodin, and all the other pills I was on. They gave me a mild pain killer called Lyrica (Pregabalin) which is ideal for neuropathy. That and some antidepressants/ mood stabilizers allowed me to sleep a solid 7-8+hours a night and that made a HUGE difference to everything.

The bottom line here Nicki is if you think the depression is affecting him, please seek advice and see if they can help him with it. I would recommend a referal to a Psychiatrist and don't take no for an answer if you think his depression is an issue, as this may help him a lot. Depression is very real and very common among us on the long slow climb out of this ordeal so don't but the 'tough guy' story.

Wishing you and your Dad the best.
Scam

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

I called the pains shooter! That is where the nerve ending were cut and now they are trying to find something to link too. This is so common. Some get it worse than others and with the aggressive treatment and extreme surgery this does not surprise me. To suggest what to do is hard for all us here on CSN and also very hard for the doctors to know what to do. Everyone reacts to treatments differently and recover so differently.

It took me 6 months before being able to go back to work. Several of our local support head and neck group have gone back at 3-4 months and a couple at 7-8 months.

When i did mine 14 years ago they did not use many pain meds, so he should feel thankful he has them.

All this does not change if your dad is depressed. I know I was and took antidepressants for years and now am off. I would suggest before find a phycologist that he visit with his general family doctor as this is who has help me with my depression.

Easy to say and hard to do but time will heal and patience while waiting for recovery. I would say it took me approx. 18 months after treatment to feel like a new normal man again.

nicki74
Posts: 55
Joined: Feb 2010

thank you so much for all your quick responses.. the ENT said that he is sure that the pain is because of the radiation, and how aggressive it was... the ONC stated: this is not normal... so of course after we left that i appt i had to call the ENT and ask him what the onc MEANT about not normal.. as i know you are all aware of and probably know this all too well..they just slam you at the appts with info! so my mom and i will leave, call eachother later and compare notes.. the ENT did state that no the pain was not normal, BUT it is understandable for the amount of treatment he went through.. his next appt is on the 29th of this month, and i am going to ask them about the neuropathy..i know they did mention that because the jaw was not tender they did not think it was neurcosis(sp).. i will have to ask them the difference between the two..

i thank you all so much for your responses!

God bless you all and always in my prayers..

nicki

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Nicki,

I am sorry your dad is having so a hard time. My dad is still having a lot of pain in his tongue area. He had the same cancer as your dad. He also has trouble with headaches when he wakes up in the morning.

How long did they wait after treatment before they did the biopsies? My dad is going to the ENT tomorrow and I have a feeling he is going to want to do them again.

Kathy

nicki74
Posts: 55
Joined: Feb 2010

our dad's cases are so similiar, and are back to back with these treatments! i believe my dad had biopsies done about 9 weeks out of treatment.. the ENT did the biopsies because he had "suspicious" areas.. there was an ulceration under the tongue and around.. after the ENT went in and cleaned my dad up, he said he was a lot more optimistic.. my dad has the trach, and there was so much icky stuff inside of his mouth from trach (food stuck), and from radiation, that it was hard to see what was really going on in there without doing biopsies.. he took about 8 samples.. looked in his throat and lungs also..

it is such a hard treatment on them, that it could take a couple of years for healing... please keep me posted on your dad!

in my prayers and thoughts always..
nicki

p.s. is your dad still on pain meds?

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Get him on some pain meds; I too have a lot of jaw pain and pain that hits the back of my ears and temple sometimes. It gets so bad I could cry, I don’t like taking pain killer but when you need one you need one and sounds like your dad needs to have some, until the healing can take affects.

nicki74
Posts: 55
Joined: Feb 2010

thank you again hondo.. he is still on fentanyl 50mcg, and i believe they just upped that to 75.. he takes the norco every six hrs, which i think they are trying to get back on now because the dosage for the fentanyl was increased.. he did very boldy take a piece of sausage off a piece of pizza tonight, and walked out the house holding his mouth.. i think he is just so fed up with it, but at the time is grateful that he has come this far.. he said pizza was too spicy, i said yes dad, baby steps.. haha.. he has been holding his jaw since january! i tell both him and my mom that i get on this site and talk with people who have gone through this, and it is unbelievable the amount of information i gain for this site..

thank you again, and you will always be in my prayers!

nicki

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