Long term effects of radiation/ chemo

Roar
Roar Member Posts: 269 Member
in Head and Neck Cancer #1

have been out of treatment for almost three months. Just had my first pet scan and it was negative. I had a partial neck dissection and removal of one lymph node under my jaw left side. My primary was diagnosed as occult primary, so they radiated everything in my head and neck and I had three chemo treatments of cisplatin. i was doing fine, just started to get back to normal and out of nowhere my hearing is starting to go. Inner ear is filling with fluid. Went to ENT and said it was an infection and drained he ear. Hearing continues to get worse.

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Comments

  • Roar
    Roar Member Posts: 269 Member
    #2
    Mucous build up

    Does anyone know how long it takes for the thick mucous buildup in the throat take to go away? Will it go away? 

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #3
    Welcome

    Welcome to our board. My mucous has been an intermediate problem and has been constantly with me for a year now. I think others on ths board will have a better insight into the mucous challenges. Rick.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    welcome

    Roar,

     

    The mucus has subsided greatly for me.  Everything gets slowly better.  It is funny how we can have a throat full of mucus and a mouth as dry as a desert.

     

    I was stage IVa, SCC, BOT , HPV+, 1-lymph node (surgery, rads & Erbitux)

     

    Welcome onboard the H&N train.

     

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Welcome Roar....

    you've just joined the best HNC forum on the internet!  Another member's husband is going thru stuff with his ears right now, also....he too had fluid build up going on.  You're only 3 months out of treatment....which seems like a long time, but I'm finding that recovery keeps going for months and months and months.  At three months I was still very tired, still having trouble eating things...the regular stuff.  I think we have to give it a year, and then see where we are with hearing, neuropathy, taste, saliva and the rest of it.

    There are way smarter people here than me, tho....you'll be hearing from them I'm sure.

    Congrats on getting thru the tunnel and out the other side.....long journey for sure.

    p

  • SeaUSoon
    SeaUSoon Member Posts: 5
    #6
    Similar experience

    I had similar problems. Right ear had infection and loss of hearing at about 2 months post treatment.  Infection kept getting worse due to compromised immune system and finally went MRSA.  ENT was not aggressive enough with treatment and I ended up with total loss in right ear and 50% loss in left. Make sure you ENT is aggressive with strong antibiotics and antibiotic ear drops. 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Welcome ROARRRR

    I was Roarrrring... susel

    What you describe is not umcommon with many... Ear wax build up after rads, many here have had issues, that and the mucous you describe are both common and usually temporary.

    Like Matt said, it gets better, but the healing process is slooooooow, measured in months usually, and even on occasion years. More than likely you're going to have all kinds of mystery, aches, pains and things going on..., most will no doubt put anxiety in to your life... But for the major population here, you're going to make it and be kicking around for a long while.

    As Phrannie said, this is a great site, with many awesome people...

    If you get a chance, check the first thread on the H&N Forum, called the SuperThread..., tons of great info and links there..

    Oh, and for SUS, though it's always good to be pro-active, I can only think of 1-2 people on here that have had issues with MRSA, so that I don't believe is a very common thing for most here.

    Big welcome to you as well..

    Best,

    John

  • wrhbounds
    wrhbounds Member Posts: 39
    #8
    welcome

    I know how you feel. Treatment is over and let's get on with life. The mucous will get better SLOWLY. Its takes time or it did for me.  Keep a positive attitude and remember that you are in a marathon.

    Bill T2N3M0 SCC

    14 year survivor

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #9
    Journeys into the Occult...

    Primary that is!

    Hi Roar. Congrats on meeting NED! I hear he's a great guy! Unknown primary here too. Tx N2b Mo Stage IV. 7 rads (of 30) and 1 chemo (of 6) into treatment and about to start week two. Hope they get that ear cleared up!

    The folks here are great. There are plenty of war stories to share :) 

    "T"

  • Roar
    Roar Member Posts: 269 Member
    #10
    Skiffin16 said:

    Welcome ROARRRR

    I was Roarrrring... susel

    What you describe is not umcommon with many... Ear wax build up after rads, many here have had issues, that and the mucous you describe are both common and usually temporary.

    Like Matt said, it gets better, but the healing process is slooooooow, measured in months usually, and even on occasion years. More than likely you're going to have all kinds of mystery, aches, pains and things going on..., most will no doubt put anxiety in to your life... But for the major population here, you're going to make it and be kicking around for a long while.

    As Phrannie said, this is a great site, with many awesome people...

    If you get a chance, check the first thread on the H&N Forum, called the SuperThread..., tons of great info and links there..

    Oh, and for SUS, though it's always good to be pro-active, I can only think of 1-2 people on here that have had issues with MRSA, so that I don't believe is a very common thing for most here.

    Big welcome to you as well..

    Best,

    John

    What is mrsa and Ned ? And

    What is mrsa and Ned ? And thank you everyone for the welcome? 

  • alligatorpointer
    alligatorpointer Member Posts: 131
    #11
    Roar said:

    What is mrsa and Ned ? And

    What is mrsa and Ned ? And thank you everyone for the welcome? 

    MRSA and NED

     

    MRSA (methicillin-resistant Staphylococcus aureus) are strains of bacteria (Staphylococcus aureus) that are resistant to powerful antibiotics

     

    NED =  No Evidence of Disease

  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #12
    Welcome

    Roar,

    I too am 3 months out with a clean PET scan, I have about 40 -60 % hearing loss due to cisplaitin chemo treatment. I didn't have infection or anything, the hearing was just gone. I am hoping to be fitted with hearing aids fairly soon. I had mucus problems, but mine is starting to get better, and if anything I am kind of starting to battle dry mouth and throat. Are you eating by mouth? I noticed improvememnt in the mucus when I started really pushing myself to eat by mouth...

    Jim

  • Roar
    Roar Member Posts: 269 Member
    #13
    Hard12Find said:

    Welcome

    Roar,

    I too am 3 months out with a clean PET scan, I have about 40 -60 % hearing loss due to cisplaitin chemo treatment. I didn't have infection or anything, the hearing was just gone. I am hoping to be fitted with hearing aids fairly soon. I had mucus problems, but mine is starting to get better, and if anything I am kind of starting to battle dry mouth and throat. Are you eating by mouth? I noticed improvememnt in the mucus when I started really pushing myself to eat by mouth...

    Jim

    Yes I am eating by mouth but

    Yes I am eating by mouth but my taste is about 60%- like I told my wife the other night, I no longer enjoy eating but rather eat because I have to. I lost 40 lbs during treatment. I was almost 200lbs and am now almost 170. The good news is m diabetes is no longer an issue. If I can get my hearing back I think I can manage the mucous issue. I also have this flap of skin under my chin that I never had- do you have the same issue. Will exercise take care of this?

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    Roar said:

    Yes I am eating by mouth but

    Yes I am eating by mouth but my taste is about 60%- like I told my wife the other night, I no longer enjoy eating but rather eat because I have to. I lost 40 lbs during treatment. I was almost 200lbs and am now almost 170. The good news is m diabetes is no longer an issue. If I can get my hearing back I think I can manage the mucous issue. I also have this flap of skin under my chin that I never had- do you have the same issue. Will exercise take care of this?

    Turkey Neck Club...

    More than likely what we refer to as The Turkey Neck Club....

    If it's the same as many a few months - year post Tx, the lymphatic fluid drainage pathways become damaged durng treatment, rads specifically. You can try massage, Marine E5 has a method and procedure that's on the super thread...and eventually most if not all will go away as the glands find or establish new drainage paths...

    Somewhere down the road you might find yourself bending your head slightly forward, chin touching the chest..., then Zowie... A sensation like an electric shock rnning down the back of your neck, down your spine, maybe even your arms and legs...., LOL... another gift.

    L'Hermette's Syndrom...

    It to will go away eventually...

    Best,

    John

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #15
    Skiffin16 said:

    Turkey Neck Club...

    More than likely what we refer to as The Turkey Neck Club....

    If it's the same as many a few months - year post Tx, the lymphatic fluid drainage pathways become damaged durng treatment, rads specifically. You can try massage, Marine E5 has a method and procedure that's on the super thread...and eventually most if not all will go away as the glands find or establish new drainage paths...

    Somewhere down the road you might find yourself bending your head slightly forward, chin touching the chest..., then Zowie... A sensation like an electric shock rnning down the back of your neck, down your spine, maybe even your arms and legs...., LOL... another gift.

    L'Hermette's Syndrom...

    It to will go away eventually...

    Best,

    John

    What about the stabbed with a hot knife club?

    I've had issues with my left shoulder/arm since the surgery on Feb. 7th.  It's been weak and limited in movement. Last week, I started getting an awful pain when I move a certain way (Me: Doc,  it hurts when I do this... Doc: "Then don't do that!"). It feels like I'm being stabbed with a hot knife in my shoulder. Docs think it's my nerves coming back as well as my body compensating for the left side weakness,

    Whatever it is, I'd like it to go away! 

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    fishmanpa said:

    What about the stabbed with a hot knife club?

    I've had issues with my left shoulder/arm since the surgery on Feb. 7th.  It's been weak and limited in movement. Last week, I started getting an awful pain when I move a certain way (Me: Doc,  it hurts when I do this... Doc: "Then don't do that!"). It feels like I'm being stabbed with a hot knife in my shoulder. Docs think it's my nerves coming back as well as my body compensating for the left side weakness,

    Whatever it is, I'd like it to go away! 

    "T"

    HurtzMore

    You're just going to have to live with it I guess, until something hurtz more...

    Sorry, I know where you're coming from... Different aches, pains, bumps and bruises...

    It's the "New You", the one that feels like someone smackin the crap out of you, because you're kickin Jack's azz...

    JG

  • peggylulu
    peggylulu Member Posts: 375
    #17
    fishmanpa said:

    What about the stabbed with a hot knife club?

    I've had issues with my left shoulder/arm since the surgery on Feb. 7th.  It's been weak and limited in movement. Last week, I started getting an awful pain when I move a certain way (Me: Doc,  it hurts when I do this... Doc: "Then don't do that!"). It feels like I'm being stabbed with a hot knife in my shoulder. Docs think it's my nerves coming back as well as my body compensating for the left side weakness,

    Whatever it is, I'd like it to go away! 

    "T"

    "T"

    Whatever you do don't stop using your arm . Mine hurt just like you discribe so I quit using it much and  the pain got worse ! Seemed like I lost more use of my arm. I wound up calling my onc and the Nurse said it was hurting worse because I wasn't useing it . I wound up having to go to Pt , and that helped the pain but I still have some trouble useing it .

     

    Peggy

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #18
    peggylulu said:

    "T"

    Whatever you do don't stop using your arm . Mine hurt just like you discribe so I quit using it much and  the pain got worse ! Seemed like I lost more use of my arm. I wound up calling my onc and the Nurse said it was hurting worse because I wasn't useing it . I wound up having to go to Pt , and that helped the pain but I still have some trouble useing it .

     

    Peggy

    Use It or Lose It....

    Thanks Peggy,

    I'm all over it. I have an appointment the 4th of April for a PT evaluation. We'll see where we go from there. 

    I'm still doing the exercises they gave me but I'm not feeling/seeing much improvement. It's been painful all along and last week the burning knife pain that literally takes my breath away started. It will be challenging to do the PT during treatment but I have to. As you said... "don't stop". I have to regain 95+% use of that arm to play guitar correctly without fatiguing. 

    "T"

  • NJShore
    NJShore Member Posts: 429 Member
    #19
    Welcome Roar!

    Roar,

    Welcome to the neighborhood, my husband is also having fluid in the ear issues (10 weeks post treatments, 1/15/13 was his last tx). The ENT Surgeon said it was definitely the rads. That it is swelling. They are almost positive it will subside. However, my husband was just mr. miserable with his clogged ear. I have a 20% hearing loss, so with him not hearing, and a lack of enunciating his words.. we were headed to a bad communication issue. Fortunately the Doctor sympathized and inserted a tube into Dan's ear drum - Immediate relief, and fortunately his hearing returned.

    My hearing loss is due to needing tubes in my ears when I was little and my parents were afraid of the thought and thought they would hurt me.. so instead my ear drums broke regularly. When the fluid is behind that ear drum, it just sounds like your head is in a fish bowl, doesn't it?

    I wish you the best, and don't give up.. everything in recovery seems to show up for a couple of weeks, and the symptoms move on to something new..

    Wishing you the best..

    Kari

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #20
    Mucous

    Three years out (matter of fact this saturday is exactly 3 years)and clearing my throat has become one of my trademarks. Although it has gotten better, I can't play hide and seek with the grandkids to long or else I have to clear my throat and give myself away. At night forget it, I still have a radiant glow that makes me "IT" more than I deserve.

     

    All kidding aside, They told me whatever I didn't get back or change within a year I most likely will be stuck with. Well, like I said this Saturday will be 3 years and I am still enjoying recooping, especially my voice which before cancer was really bassy.

    Long story short, enjoy your recovery it is different for everyone and everything you had and enjoyed before is still fare game.

    Enjoy the day

          Jeff

  • Roar
    Roar Member Posts: 269 Member
    #21
    NJShore said:

    Welcome Roar!

    Roar,

    Welcome to the neighborhood, my husband is also having fluid in the ear issues (10 weeks post treatments, 1/15/13 was his last tx). The ENT Surgeon said it was definitely the rads. That it is swelling. They are almost positive it will subside. However, my husband was just mr. miserable with his clogged ear. I have a 20% hearing loss, so with him not hearing, and a lack of enunciating his words.. we were headed to a bad communication issue. Fortunately the Doctor sympathized and inserted a tube into Dan's ear drum - Immediate relief, and fortunately his hearing returned.

    My hearing loss is due to needing tubes in my ears when I was little and my parents were afraid of the thought and thought they would hurt me.. so instead my ear drums broke regularly. When the fluid is behind that ear drum, it just sounds like your head is in a fish bowl, doesn't it?

    I wish you the best, and don't give up.. everything in recovery seems to show up for a couple of weeks, and the symptoms move on to something new..

    Wishing you the best..

    Kari

    Your husband and I may be

    Your husband and I may be related- I to am sometimes known as mr. Miserable

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