Continued Throat soreness

Hello all I have been around this site since my diagnosis in Oct 2011.  Not much of a writer, but found so much info on this site sorry I have not chimed in before.  I was diagnosed with Stage 3 BOT with minor involvement of 1 node on the same side.  Was scheduled for  3 rounds of Chemo, but hearing loss after the second was so severe that they cancelled my last chemo. completed 7 weeks of IMRT on 6 Jan 2012.  During my initial PET/CT scan my prostate lit up like a Christmas tree so after completion of H&N treatments,  had a Biospy for pCA which came back positive with a Gleason 6 score.  Determined to be low grade cancer.  So then preceded to have 8 more weeks of IMRT to kill that beast.  Scans in Nov showed me to be clear on both ends according to my rad doc.  Also see an ENT every three months, scopes show everything to be OK soo far.  Here is my question.  I am over 1 year out from all H&N treatments.  But my upper soft pallet and throat still hurt continually.  By the end of the day I have a hard time even talking.  Have spoke to both my ENT and Rad doc and they are not concerned.  Am I just making a mountain out of a mole hill or is this just my new normal for awhile longer.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Are we having fun yet?

    I guess the good part of this, if there is a good part, is that you've gotten your entire lifetime supply of heartache out of the road all at once.  Just kidding.  Seriously, you've been through a real ordeal.  The best news is that you survived it, and that your follow ups are negative.  The scopes are important, because they a definitive about the issue of sort throat/palate.  You've still got radiation effect, NOT cancer as a source of the continuing discomfort.  It is therefore your new normal for now, but it wont be forever.  We continue to heal for a very long  time after damage from radiation--- years for many of us.  My throat is much like yours, and I'm now about 11 months out  from treatment.  Well, 11 months out from my second treatment,  anyway. 

    I'd just carry on doing the best that I could, knowing that time will take care of these symptoms.  If the first year  didn't, the second year likely will.  An example of what I'm talking about is the unpredictable return of salivary function.  Loss of saliva is due  to damage to the glands themselves.  It took me four years to recover this function the first time.  I have read on this board of others taking 10.

    Welcome to the group.  I'm sure others will chime in soon.

     

    Pat

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome Flyboy...

    Just a little military ribbing...

    Welcome to the forum....

    Like Pat, I have to agree, each of us are different, heal, respond, and recover differently. 

    Its a slow process... measured in weeks if not months. 

    Hang n there and I'm sure little by little you'll eventually see improvement. 

    Best ~ John

  • Pam M
    Pam M Member Posts: 2,196
    No Need for Apologies

    Glad you're speaking up now. 

    Odd how some things that cause us such concern are of no consequence in our doctors' opinions. 

    Sorry you're in coninuous pain.  For most of us, I think we get to a point where we're seldom in pain.  Hope you get there soon.

  • George_Baltimore
    George_Baltimore Member Posts: 303
    Pam M said:

    No Need for Apologies

    Glad you're speaking up now. 

    Odd how some things that cause us such concern are of no consequence in our doctors' opinions. 

    Sorry you're in coninuous pain.  For most of us, I think we get to a point where we're seldom in pain.  Hope you get there soon.

    Working on 9 years remission

    and my throat still has some discomfort.  I wouldn't worry about it.  What I would worry about is Skiffin.  He's an ex-jarhead.  Us "flyboys" have to stick together.  On second thought, I guess I shouldn't say "ex".  They say once a marine, always a marine.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member

    Working on 9 years remission

    and my throat still has some discomfort.  I wouldn't worry about it.  What I would worry about is Skiffin.  He's an ex-jarhead.  Us "flyboys" have to stick together.  On second thought, I guess I shouldn't say "ex".  They say once a marine, always a marine.

    Hi Vet...

    Boy we are almost identical.  I was stage III BOT w/ one lymph node same side of neck....Radiation and Erbitux ...even did not get the last dose of Erbitux I has such a reaction.  I too am 1 year out now (last rad was January 21, 2012) and my throat "just" stopped hurting this past month...but I will say it still has flare-ups.

    I live in mid-Idaho..very dry in summer, very cold in winter and I heat my home with wood ....so very dry in the house at night....your most likely experiencing the new norm and rad affects for sure...but a humidifier may greatly help if you don't have one....if you don't, buy a very good (and quiet one if you don't like noise) ...really helps.

    Continue to gargle with warm water and honey if you can tolerate it ...lift your head back high and gargle deep...

    There's other things to do...I believe most of my pain was from drying, cracking and of course affects of rad...but there are things you can do to try and limit that and promote healing.

    by the way ...thank you Sir for your service to our Country. My father gave 24 years to the US Navy. :)

    Best,

    Tim

  • AirForce Vet
    AirForce Vet Member Posts: 25
    Skiffin16 said:

    Welcome Flyboy...

    Just a little military ribbing...

    Welcome to the forum....

    Like Pat, I have to agree, each of us are different, heal, respond, and recover differently. 

    Its a slow process... measured in weeks if not months. 

    Hang n there and I'm sure little by little you'll eventually see improvement. 

    Best ~ John

    Back at ya Jarhead

    Thanks foe the kind words!!!!  We vets have to stick together.  Also I will have a full fledged Marine in my family says my son in in Boot Camp in California right now.  Have read your posts foer over a year. Can honestly say you always kep my spirits up Marine

  • AirForce Vet
    AirForce Vet Member Posts: 25

    Are we having fun yet?

    I guess the good part of this, if there is a good part, is that you've gotten your entire lifetime supply of heartache out of the road all at once.  Just kidding.  Seriously, you've been through a real ordeal.  The best news is that you survived it, and that your follow ups are negative.  The scopes are important, because they a definitive about the issue of sort throat/palate.  You've still got radiation effect, NOT cancer as a source of the continuing discomfort.  It is therefore your new normal for now, but it wont be forever.  We continue to heal for a very long  time after damage from radiation--- years for many of us.  My throat is much like yours, and I'm now about 11 months out  from treatment.  Well, 11 months out from my second treatment,  anyway. 

    I'd just carry on doing the best that I could, knowing that time will take care of these symptoms.  If the first year  didn't, the second year likely will.  An example of what I'm talking about is the unpredictable return of salivary function.  Loss of saliva is due  to damage to the glands themselves.  It took me four years to recover this function the first time.  I have read on this board of others taking 10.

    Welcome to the group.  I'm sure others will chime in soon.

     

    Pat

     

    Survivor

    Thanks for the great insights!  I will just keep caring on with this journey and time heal the wounds.

  • AirForce Vet
    AirForce Vet Member Posts: 25

    Working on 9 years remission

    and my throat still has some discomfort.  I wouldn't worry about it.  What I would worry about is Skiffin.  He's an ex-jarhead.  Us "flyboys" have to stick together.  On second thought, I guess I shouldn't say "ex".  They say once a marine, always a marine.

    Hello fellow Flyboy

    Thanks for the thumbs up and welcome.  I promise I will post more often.  We flyboys have to take care of this marine on the site.  Lol

  • AirForce Vet
    AirForce Vet Member Posts: 25
    Tim6003 said:

    Hi Vet...

    Boy we are almost identical.  I was stage III BOT w/ one lymph node same side of neck....Radiation and Erbitux ...even did not get the last dose of Erbitux I has such a reaction.  I too am 1 year out now (last rad was January 21, 2012) and my throat "just" stopped hurting this past month...but I will say it still has flare-ups.

    I live in mid-Idaho..very dry in summer, very cold in winter and I heat my home with wood ....so very dry in the house at night....your most likely experiencing the new norm and rad affects for sure...but a humidifier may greatly help if you don't have one....if you don't, buy a very good (and quiet one if you don't like noise) ...really helps.

    Continue to gargle with warm water and honey if you can tolerate it ...lift your head back high and gargle deep...

    There's other things to do...I believe most of my pain was from drying, cracking and of course affects of rad...but there are things you can do to try and limit that and promote healing.

    by the way ...thank you Sir for your service to our Country. My father gave 24 years to the US Navy. :)

    Best,

    Tim

    Tim

    Thank you for the kind words!  Spent 28 years in my beloved Air Force.  It is amazing how close are cases are.  Looks Like the only difference was I had Cisplatin.  Please thank your father for his service to his country.  Seems like we have too many people nowadays trying to tear it down instead of understating that we live in the greatest country in the world.  And i know having been in over 30 different countries. 

  • AirForce Vet
    AirForce Vet Member Posts: 25
    Pam M said:

    No Need for Apologies

    Glad you're speaking up now. 

    Odd how some things that cause us such concern are of no consequence in our doctors' opinions. 

    Sorry you're in coninuous pain.  For most of us, I think we get to a point where we're seldom in pain.  Hope you get there soon.

    To Pam

    Thanks Pam its just funny how every little pain now raises the alarm button.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Back at ya Jarhead

    Thanks foe the kind words!!!!  We vets have to stick together.  Also I will have a full fledged Marine in my family says my son in in Boot Camp in California right now.  Have read your posts foer over a year. Can honestly say you always kep my spirits up Marine

    HollyWood Marine....

    LOL, that's what we Parris Island grunts called the San Diego Recruits...

    They were issued sun glasses..., they have the hills, we had the sand fleas..., it all washes out.

    Service is tough no matter what branch when you first come in fresh out of high school.. But I think it's an excellent choice, especially if you are not college bound. Even more so if you need a little time to find your roots....a place to stay, food to eat, clothes to wear, and free medical...and you even get paid for it.

    Every day a Holiday, Every meal a Feast...

    I actually wouldn't mind seeing the draft put back in place, everyone should have to serve a few years...problem with youth and society in general these days....

    OK, I'll get off the soap box, LOL...

    KUDOS to both you and y our son for your service and support.

    Thanks for the kind words...

    I plan on hanging around here for a while longer....

    Unfortunate about the frustrations that the site is going through right now with the somewhat (putting it mildly SNAFU) upgrade.

    Best ~ John

     

  • AirForce Vet
    AirForce Vet Member Posts: 25
    Skiffin16 said:

    HollyWood Marine....

    LOL, that's what we Parris Island grunts called the San Diego Recruits...

    They were issued sun glasses..., they have the hills, we had the sand fleas..., it all washes out.

    Service is tough no matter what branch when you first come in fresh out of high school.. But I think it's an excellent choice, especially if you are not college bound. Even more so if you need a little time to find your roots....a place to stay, food to eat, clothes to wear, and free medical...and you even get paid for it.

    Every day a Holiday, Every meal a Feast...

    I actually wouldn't mind seeing the draft put back in place, everyone should have to serve a few years...problem with youth and society in general these days....

    OK, I'll get off the soap box, LOL...

    KUDOS to both you and y our son for your service and support.

    Thanks for the kind words...

    I plan on hanging around here for a while longer....

    Unfortunate about the frustrations that the site is going through right now with the somewhat (putting it mildly SNAFU) upgrade.

    Best ~ John

     

    My Son Aaron

    He was in JrROTC his entire 4 years in high school.  GraduatEd as ther Command Sergeant Major, and also had a 2 year Army ROTC Ride to Texas A&M, but he did not want any part of the Army.  He was offered by the Air Force to be a sensor operator on their drones, i nought that would be the $&))$&$.  But did not like the thought of being coupled up in a trailer for 12 hours at a time looking at video screens.  So he joined the Marines and is in the Engineering MOS.  Still do not have his exact shred out. He graduates  Mar 8th.  I agree with with you that it would not hurt every young man and women to servhe their Country for two Years.  Time to get off my soap box.  He plans to attend college while in the marines and use his GI Bill afterwards if he decides not to make it a career. Take care John

     

    Joe