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ET@cowboy
ET@cowboy Member Posts: 15
in Head and Neck Cancer #1

I am still real new to the site. However today I ring the bell. After six weeks and a day I am almost done.  I never thought the Rad would be worse than the three surgeries/ICU. Go figure. The past weekend the cumlitive affect took hold. For those that have gone this was before a question (s). How long did the burn on the neck last? Did swiming pools effect the burn? Did any new side effects show up after treatment?  how long does the raspy voice linger. After  surgeries my voice was fine. I still cant complain I am still able to eat. Feels like shards of glass going down but still no tube. Low saliva and no taste. Maybe food is over rated. I still havn't lost my faith or hope. 

Eric

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    WHOO HOO for YOU, Eric!!

    Congrats on ringing that bell!  It's nice knowing you don't have to go somewhere every single day of the week.

    My neck burn healed up pretty quickly once they quit picking on it every day.....the hurtie part in about a week, tho it was rough to the touch for several weeks after (but no pain).  I just kept slathering Aloe Vera on it, once that dried I used Calendula cream....and kept it up for a while.  My voice didn't change any, but others will chime in on that part of your questions. 

    Just keep in mind you keep cooking for another couple of weeks, so your throat could get sorer.  Taste seems to come back in it's own sweet time.....some folks here get it back rather quickly, I'm still waiting.....it's gotten better, but it still craps out quickly when I eat.  I'm still waiting for more saliva, too.....I'm 9 months out of treatment.  One thing about going through this.....a personn learns that food is truly for survival....taste is only icing on a cake....Smile 

    You're almost out of the tunnel....put on your sunglasses!!

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    neck burn 101

    Eric,

    Congratulations on completion, I will ring my bell for you too.

    The neck burn was my worst pain of treatments. I used Silver Sulfadiazine Cream. It is messy, but takes ALL the pain away. I  tried other creams, but none worked as well. If it is bad get the large container (400 gram) not the little one (50 gram).  My burn was bad during weeks 6, 7 & 8.

    Good luck,

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Congrats...

    Burn doesn't take that long it is is similar to mine, which was like a bad peeling sunburb...

    I wouldn't think swimming should bother it, and actually might be good for healing a little quicker... Helping to get rid of the deas skin later in the shower or drying of...

    Pleanty of after side effects...read up on the SuperThread... (first post on this forum).

    But to name a few to get you started....

    Turkey Neck  - swoolen lymph glands due to fluid build up..., comes on around 3 months out, lasting 6 - 9 months usually.

    L'Hermett's - elctric shock or tingling sensation you get when bending your head forward touching the chin to the chest..., also lasting about the same as above.

    Taste and saliva may take up to two+ years to nearly completely come back...

    High percentage chances of Thyroid failure, easily monitored with blood tests to include TSH, and Free T-4. Normally easily corrected with synthetic hormones...

    Possib;e complications with tooth decay (lack of saliva), and effects of radiation.

    Various other aches, pains, sore spots or things that you can't really explain...

    Deal with them if they come, enjoy if they don't... I'm sure others will chime on on the many gifts of radiation that I haven't mentioned.

    JG

     

  • peggylulu
    peggylulu Member Posts: 375
    #5
    Congradulations

    on ringing that bell ! I remember the relief that I felt that day almost 7 months ago , just knowing that I didn't have to get up and dressed and out the door the next day ! I lost my voice for a couple of weeks and after it came back it is raspy or hoarse some days more than others . There are others on here that had the same problem but I think all or most have had their "old" voice come back with time. Be sure to stay in touch with us and be sure and let us know the day you find out that you are NED ! ( No Evidence of Disease )

    Peggy

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    peggylulu said:

    Congradulations

    on ringing that bell ! I remember the relief that I felt that day almost 7 months ago , just knowing that I didn't have to get up and dressed and out the door the next day ! I lost my voice for a couple of weeks and after it came back it is raspy or hoarse some days more than others . There are others on here that had the same problem but I think all or most have had their "old" voice come back with time. Be sure to stay in touch with us and be sure and let us know the day you find out that you are NED ! ( No Evidence of Disease )

    Peggy

    Dessed...

    You actually got dressed..., LOL.

    JG

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Skiffin16 said:

    Dessed...

    You actually got dressed..., LOL.

    JG

    What???

    you went to radiation in your jammies?....LOLOLOLOL

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
    Ding a Ling!

    Congrats Eric!

    One month ago I rang the bell as well :) It's an awesome feeling for sure :) My neck held up pretty good until that last week, then it broke out. It was like a really bad sunburn. I just kept up with the cream and it was much better within a week or so. I don't know if pool water would aggravate it. Might want to run that by your docs. My voice cleared up within two weeks. 

    Since treatment ended I've developed a couple of things that are of concern. I have some major sensitivity to cold in my teeth. Dental issues are a common problem because of what the rads do to your mouth, jaw and teeth. The other thing is dizziness. This started during treatment and has worsened since it ended. I have to be careful standing up or moving too quickly as I get dizzy. Many times I have to sit down again until it passes. Docs say it's pretty common and part of it is due to the meds I take for BP and heart related issues.  

    Hang tough Eric. The next few weeks are not going to be fun in the least (frankly, they're going to suck!). It will seem as if it's never going to get better but it does, little by little. Make sure you stay hydrated and nourished. Stay ahead of the pain and you'll be fine. 

    Congrats again! 

    "T"

     

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #9
    Congradulations

    Things will improve, Rick.

  • peggylulu
    peggylulu Member Posts: 375
    #10
    phrannie51 said:

    What???

    you went to radiation in your jammies?....LOLOLOLOL

    Lol

    Y'all are crazzzy ! That's why I love this site !!!!!

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #11
    Voice and Fatigueby

    My voice went very raspy about a month out from treatment.  Still that way 5 months out, mostly I think due to dryness and generally being burned up with radiation.  Morning is a little better, by evening I have to hydrate a lot to keep my voice going.  No idea how long that will last.

    For the first two months I was very, very tired.  Had to nap a lot and thought I would never get my engery back.  5 months+ out my envergy is 75% + back.  Never thought I would see this happen.

    Taste is variable and not near where I want.  Slowly, very slowly coming back.  Greatful for what I have, at least most of the time.

    Depression can hit and hit hard or at least it did for me and a few others I know.  I am slowly getting over that.

    Long, long journey, but at least I am here to make the journey.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    phrannie51 said:

    What???

    you went to radiation in your jammies?....LOLOLOLOL

    T&WB

    Thong and wife beater...., flip flops of course...

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #13
    HobbsDoggy said:

    Voice and Fatigueby

    My voice went very raspy about a month out from treatment.  Still that way 5 months out, mostly I think due to dryness and generally being burned up with radiation.  Morning is a little better, by evening I have to hydrate a lot to keep my voice going.  No idea how long that will last.

    For the first two months I was very, very tired.  Had to nap a lot and thought I would never get my engery back.  5 months+ out my envergy is 75% + back.  Never thought I would see this happen.

    Taste is variable and not near where I want.  Slowly, very slowly coming back.  Greatful for what I have, at least most of the time.

    Depression can hit and hit hard or at least it did for me and a few others I know.  I am slowly getting over that.

    Long, long journey, but at least I am here to make the journey.

    For me .....

    I had HORRIBLE neck burn last 3 weeks of rads.  Had two delays due to those burns.  Silver Sulfadine (sp) - what Matt said, worked great for me. If I kept that cream on it and air tight, okay, but when I changed bandages and air hit it...oh my I would come to tears.

     A solid 1.5 months after my last rad was my worst.  Felt like Mac trucks kept hitting my body and then backing up again ....I swear the first 1.5 months after rad was a complete fuzz ...mucus was terrible, pain was hard.  I took 6-9 Narco a day and wore two fentynal pain patches.

    4 months out my voice went quite raspy..now 16 months out my voice comes and goes..some days quite raspy...faint, other days almost normal, but nevery has fully come back to before treatments.

    16 months out and I still have some pain in my lower throat, nothing serious pain, just like a newly sore throat has come on or something ...almost feels like I have a "scab" in my throat...scopes and scans always check out ...and my visiting onco doctor who had no experience with my case looked at my throat 2 months ago and said "gee, it looks so raw in there, it should still not look that way" ...but my reg onco doc who I saw a few weeks after and told him what the visiting onco said simply replied to me "she did not see the havoc the Erbitux wreaked on your throat and upper torso" ...he basically attributed my often raw / soar looking throat to my Erbitux treatments and how it made the inside of my mouth/ throat look like "hamburger meat" - his words.

    Taste was badck nearly 80% but has now been on vacation again the last 2 months. Seems to not be an uncommon thing.  No spicy for me and still can not taste sweets even when my taste was back.

    Elbow pain is quite bad (started months back) ..don't know for sure why the elbows, but maybe affects from Erbitux as well

    Now with all that above (I feel like I have been really negative, but it's just my experience) here is some positive stuff.  I now hunt in the high elevation forests where I live (Idaho at 5500 feet above sea level) carrying a 45 lb pack up and down steep ravines and rock cliffs chasing bear, elk, deer, mountain lion, turkey, grouse, you name it...I got a tag for it.

    I did cut last fall and will cut this summer / fall 8 cords of wood and split it (the old fashion way of splitting, with an axe) ....and I just celebrated my 2nd B-day after diagnosis with my wife and five children...

    So life is great, I am thankful to the good Lord for the family / friends He gave me (including my online family here) my church and my doctors and nurses He gave me....I'd say all in all I am a success story and I love each day I have.

    Keep us posted!!!  You sir will do great as well in the end, no matter what may gon on in between! :)

     

    Tim

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