After Radiation and Chemo for a few years

dennis318
dennis318 Member Posts: 349 Member
in Head and Neck Cancer #1
I'm checking back in and wanted to know what everyones aftermath, that had radiation to there neck, or larnyx area...i suffered l/s paraylis, kept my voice box, but have a very tight breathing line..for some reason the muscles in my neck seem thicker, and sometimes seem to lock, the nerves in my throat are still resistant to spicy foods and burn, I thought I would heal up inside, there still pain. The Doctor tells me its radiation Effects. I don't think they know what it is...Sounds like a guessing and waiting game..Someone ease my mind alittle, I got myself doing checks, other than that..I wake to clearing my throat from the clogging of phlem, takes about an hour to unclogg and get full oxygen intake, I did develop sleep apnea....I found this out myself, and will ask the doctors...other than that i walk, and talk in a graveltone voice, I get so dam frustated at times i could spit, and find it hard to vent..take care everyone, I find cancer is a hard thing to live with and struggle every day..Dennis

Comments

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #2
    Dennis ..thank you for your post...
    ....first of all let me say I am sorry you have to struggle everyday after all this time...but I also want to say "thank you" for your post. It helps those of us who are newbies "see" some of the signs we also wonder about now, but possibly years out.

    I know your ? is more for those years out ....but if I may .....

    I am 4 months post rads and ...

    1. I just developed a hoarse throat May 1st and it has not gotten worse but has not gotten better and some days it is better than others a bit.
    2. My neck muscles too feel thicker and tighter ....which hopefully are the cause for number 3 ......
    3. I have headaches and what feels like sinus or tension headaches / pressure over my left eye the last two weeks. There was a few days I did not have the headache and though they do not seem to go away with 5 / 200mg of advil ...they do seem to go away when I take a Narco pain pill 10/325. So my hope is I am just still dealing with withdrawal (I was taking 6 Narco a day and wearing 2 pain pathces of fentynal) - been off the fentynal for over a month now.
    4. I have upper body joint pains but what's really strange is I have hip joint pain quite bad...which I never had before treatment
    5. I still feel quite blahhh. Quite blaahhh and tire easlily. (like I did before my c dx).
    6. My ear canals hurt ofen, especially the one on the left side which is where I had the cancerous lymph node. I was Base of Tongue Stage III with one lymph node affected.

    Like anyone who has had cancer the concern is always "is it back" ...but I got a clear scan on May 7th and a clear scope finger exam on May 10th....

    So I feel bad telling you your post encouraged me bc I don't want you to have to go through what you are going through ......that's why I am grateful for all the "old timers" who give advice, share their experiences on this forum.

    I'm sure more "long term survivors" willl chime in.

    Best,

    Tim

    So Dennis your post really was helpful to me tonight
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
    Looking ahead
    Hi Dennis,

    As bad as it has been for me and as dark as the day seems, I realize it could be worse. I am so sorry for your struggle and the pain you have endured. I have to believe you have brighter days ahead and soon.

    My voice has been horse for a month and I feel my neck everyday, wondering when the thickening begins. I am mostly tired with brief snippets of “old me” normality, but some how I keep moving forward. I still have 2 ½ weeks to my first post treatment PET scan and I have to believe they burned and poisoned that crap out of me.

    Coming from a newbie, keep the faith, I hope you have better days.

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Coming Up On 3 Years...
    In 2-3 weeks I'll be coming up on 3 years post rads to the tonsil area, both sides as for rads.

    The thickening you mention is probably fibrosis, which isn't un-common at all.

    Though the extend of your damage sounds more than most on here.

    I too have went through the harder tissue issues, hoarsness, mystery aches and pains, sore spots and various other issues off and on since treatment ended.

    Being easily paranoid after enduring the disease and treatment, I've followed up a lot with my ENT.

    He is always one that would rather me be pro-active instead of re-active.

    Always ensuring me that these things are common with the amount of radiation I have had. That unfortunately it goes on for several years in some people....

    Have you communicated with your MD's and let them know of you problems?

    Thoughts and prayers for future relief.

    Best,
    John
  • tommyodavey
    tommyodavey Member Posts: 726 Member
    #5
    Skiffin16 said:

    Coming Up On 3 Years...
    In 2-3 weeks I'll be coming up on 3 years post rads to the tonsil area, both sides as for rads.

    The thickening you mention is probably fibrosis, which isn't un-common at all.

    Though the extend of your damage sounds more than most on here.

    I too have went through the harder tissue issues, hoarsness, mystery aches and pains, sore spots and various other issues off and on since treatment ended.

    Being easily paranoid after enduring the disease and treatment, I've followed up a lot with my ENT.

    He is always one that would rather me be pro-active instead of re-active.

    Always ensuring me that these things are common with the amount of radiation I have had. That unfortunately it goes on for several years in some people....

    Have you communicated with your MD's and let them know of you problems?

    Thoughts and prayers for future relief.

    Best,
    John

    Symptoms
    Sorry to hear the symptoms are still bothering you at this point in recovery. After reading everyone else's posts about their aches and pains I really don't have much to complain about.

    A muscle on right neck is almost twice the size of my left. It is from the neck dissection and the stretching of the nerve. My cancerous lymph node was right below a nerve and my surgeon said he really had to move it a lot to get to the cancer. I'm still paralyzed on my bottom right lip so my smile is all messed up. It may or may not get better. Finished my rads on April 3rd. The same nerve affects my right arm too. Still can barely lift it to my head.

    For the last week my throat is very painful when I eat. It was much better 3 weeks ago and why it's acting up now is beyond me. I'm going to refill my Lidocaine Viscous.

    So those are my little aches and pains. Not much really compared to everyone else here. But still bothersome. My next Dr. appt is in 5 weeks and we'll discuss it then.

    Hope you start to feel better soon. This stuff can't last forever, can it?

    Tom
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    I'm like Tim....
    except I haven't finished treatment yet...there's this excitement in my belly about getting so close to being finished (10 rads left and 4 chemo's)....it's good to keep in mind that radiation keeps on giving...and it's not necessarily going to be a bed of roses once it's over. There's still a LOT of healing to do, even years down the road.

    p
  • dennis318
    dennis318 Member Posts: 349 Member
    #7
    phrannie51 said:

    I'm like Tim....
    except I haven't finished treatment yet...there's this excitement in my belly about getting so close to being finished (10 rads left and 4 chemo's)....it's good to keep in mind that radiation keeps on giving...and it's not necessarily going to be a bed of roses once it's over. There's still a LOT of healing to do, even years down the road.

    p

    Thanks for Chimming back in
    The joint aches are the worst. I use to run or even walk, workout....the joint pain is terrible...I'm 54.this is not a sign of old age, Thanks for bringing that up too, a struggle with walking as well, This is a pointer, what ever you do, after losing your weight, try, to get some sort of exercise program, the weight slowly comes back and then is like a freight train, it doesn't come back on where it should and the exercising spreads it out more evenly, I am now tying to lose 10 lbs, because the weight shifted to my gut and rear...lol, sorry, this is frustrating..Thanks everyone, I wish you the best...its a up and down recovery..for me alot of downers, but you keep pushing on..Dennis in TN
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #8
    The gifts that keep on giving
    Many of us have come to call radiation therapy and chemotherapy "the gifts that keep on giving." They have been shown to be very effective at curing many HNCs, but they come with a price--a wide range of side effects. Some are mild and some are severe. Some of them start right away during the actual treatment periods, and some take years to appear. Some go away, and others will be with us for the rest of our lives. And, everyone's side effects will be different--so it's hard to give exact answers to questions like yours.

    My rads led to osteoradionecrosis (ORN), fibrosis in my neck, trismus, extracted teeth, some food sensitivities, and some loss of clarity in my speech. And, I drool some! The only advice I can give is to ask your docs when you have any symptoms that might be from rads and/or chemo, get answers--and find out what can be reversed/reduced with therapy or meds, and what you might be living with for a long time or forever. Only then can you adjust to the "new normal" of life as a cancer survivor. Even when (not if, says the optimist in me)your cancer is cured your life will never be 100% the same as before HNC. And, if you are like me--three years post rads+ chemo and now NED--there will be things every day to remind you that you are a cancer survivor. My reminders come at every meal when I have to consider everything I might eat, and pay attention to every bite and swallow I make. The key is to figure out ways to cope with that new reality--and not be angry that your life has changed forever by something you didn't cause or had any control of.

    Mike
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Mikemetz said:

    The gifts that keep on giving
    Many of us have come to call radiation therapy and chemotherapy "the gifts that keep on giving." They have been shown to be very effective at curing many HNCs, but they come with a price--a wide range of side effects. Some are mild and some are severe. Some of them start right away during the actual treatment periods, and some take years to appear. Some go away, and others will be with us for the rest of our lives. And, everyone's side effects will be different--so it's hard to give exact answers to questions like yours.

    My rads led to osteoradionecrosis (ORN), fibrosis in my neck, trismus, extracted teeth, some food sensitivities, and some loss of clarity in my speech. And, I drool some! The only advice I can give is to ask your docs when you have any symptoms that might be from rads and/or chemo, get answers--and find out what can be reversed/reduced with therapy or meds, and what you might be living with for a long time or forever. Only then can you adjust to the "new normal" of life as a cancer survivor. Even when (not if, says the optimist in me)your cancer is cured your life will never be 100% the same as before HNC. And, if you are like me--three years post rads+ chemo and now NED--there will be things every day to remind you that you are a cancer survivor. My reminders come at every meal when I have to consider everything I might eat, and pay attention to every bite and swallow I make. The key is to figure out ways to cope with that new reality--and not be angry that your life has changed forever by something you didn't cause or had any control of.

    Mike

    Well Said....
    Good words of advice, an words to live with....

    JG

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