2 weeks out of treatment

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Billie67
Billie67 Member Posts: 898
edited July 2012 in Head and Neck Cancer #1
Well I'm only 2 weeks out of treatment for laryngeal CA. I have a PEG which I'm thankful for but would love to be done with! I have to use a continous feed pump because when I used the tube as intended it caused severe vomiting. My burn is starting to heal...boy I wish they'd be more honest about how that was going to feel. Instead they used words like, uncomfortable, or annoying....yea right!
My throat is so sore as is my tongue. I feel like it's raw. Anyone else have that? Each day I try to at least swallow a bit of pudding or yogurt but choke each time! Still no taste and lots of mucous, ick! The only liquid I can get down without choking is soda. Speech therapist said they actually advise patients to try soda so I guess I'm not crazy.
I know I'm probably being impatient but I want to be well again. I've got some weight to catch up on too so I know the PEG will be there for a while
:-(
I guess I just need someone to tell me when I can expect to start seeing some improvements!

Oh also, my skin is so extremely dry and flaky! Not sure if that is from my erbitux or RAD......anyone???
Thank you everyone!!!

Also, I have terrible breath! No signs of any dental problems. This happening to anyone else?

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    Matt's story
    Hi Billie67,

    I also belong to the Radiation Erbitux club. We are a minority here, but fellow bus riders treat us good.

    I went through two PEG tubes with the second one installed during week 5 of treatment; I thought for sure I wouldn’t have a way to eat for a few days. As it turned out, even though my throat became totally burned out (my rad onc said when she looked at my throat the “it was ablaze”) I never quit swallowing, so I was able too drink at least one meal a day, always. With swallowing a go, I had the PEG pulled at 2 weeks post.

    The burn was terrible around my neck, a complete open blister. I used Silver Sulfadiazine and found tremendous relief. I slathered that stuff on like a turtle neck. It messed up my shirt and pillow case but let me survive the burn very comfortably. I burned through weeks 6, 7 and 8.

    The main thing I experienced from the Erbitux was the acne covering my complete torso and face; I had enough acne for a dozen teenagers. My scalp got pretty dry and flaky.

    I only got the bad symptoms for the awful you need to hear from Tim6003 here on the site, he also took Erbitux and radiation and got terrible symptoms in spades. Things are looking better everyday. I actually ate a can of chili tonight, Ii could not believe it. On the taste scale it was a 2 (I never get above a 2) but I did not put it down, yell dog food or throw it out the window.

    I wish you complete recovery and a gentle healing process.

    Best,

    Matt
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
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    CivilMatt said:

    Matt's story
    Hi Billie67,

    I also belong to the Radiation Erbitux club. We are a minority here, but fellow bus riders treat us good.

    I went through two PEG tubes with the second one installed during week 5 of treatment; I thought for sure I wouldn’t have a way to eat for a few days. As it turned out, even though my throat became totally burned out (my rad onc said when she looked at my throat the “it was ablaze”) I never quit swallowing, so I was able too drink at least one meal a day, always. With swallowing a go, I had the PEG pulled at 2 weeks post.

    The burn was terrible around my neck, a complete open blister. I used Silver Sulfadiazine and found tremendous relief. I slathered that stuff on like a turtle neck. It messed up my shirt and pillow case but let me survive the burn very comfortably. I burned through weeks 6, 7 and 8.

    The main thing I experienced from the Erbitux was the acne covering my complete torso and face; I had enough acne for a dozen teenagers. My scalp got pretty dry and flaky.

    I only got the bad symptoms for the awful you need to hear from Tim6003 here on the site, he also took Erbitux and radiation and got terrible symptoms in spades. Things are looking better everyday. I actually ate a can of chili tonight, Ii could not believe it. On the taste scale it was a 2 (I never get above a 2) but I did not put it down, yell dog food or throw it out the window.

    I wish you complete recovery and a gentle healing process.

    Best,

    Matt

    Billie
    Was just wondering if your laryngeal CA was of the vocal cords or where? Also wondering what stage you were DX with? (If you don't mind sharing). Guess I was just trying to compare my treatments with yours. You can check my profile to see my DX and treatment, but I seem to have skipped the hardest part, the Erbitux....but sure want the rads to have knocked out all the CA!!! Welcome to the boards, these are the best survivors you'll EVER meet!!
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Oh Billie...I feel for you....
    I'm just a few days more out of treatment than you are. Ask you Dr. about that silver sulphdiazine cream, everybody with really bad burns that used it, had good luck with it. I slathered on Aloe Vera during the day, and used Calendula cream for babies at night...For my tongue (which just quit hurting in the last few days), I used MuGard and my Magic Mouthwash...also, maybe rinsing your mouth out with whole milk...it gives the illusion of having spit for a little while afterwards. Don't try swallowing it yet, just rinse and spit.

    I asked about getting my PEG pulled a week ago, since I really never used it...my Onc said no.....to wait till I was done with chemo (I have two more treatments of that). My sisters got me a batch of body butters to use on my skin...they helped a lot.

    Improvments come by degrees....two weeks is just a drop in the bucket...I think you'll see some small turnarounds within the next week...just small things, but even then we rejoice!

    p
  • hawk711
    hawk711 Member Posts: 566
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    Oh Billie...I feel for you....
    I'm just a few days more out of treatment than you are. Ask you Dr. about that silver sulphdiazine cream, everybody with really bad burns that used it, had good luck with it. I slathered on Aloe Vera during the day, and used Calendula cream for babies at night...For my tongue (which just quit hurting in the last few days), I used MuGard and my Magic Mouthwash...also, maybe rinsing your mouth out with whole milk...it gives the illusion of having spit for a little while afterwards. Don't try swallowing it yet, just rinse and spit.

    I asked about getting my PEG pulled a week ago, since I really never used it...my Onc said no.....to wait till I was done with chemo (I have two more treatments of that). My sisters got me a batch of body butters to use on my skin...they helped a lot.

    Improvments come by degrees....two weeks is just a drop in the bucket...I think you'll see some small turnarounds within the next week...just small things, but even then we rejoice!

    p

    Hi Billie
    Looking at your post it took me back 2.5 years. I am that long out of treatment, but back when I was two weeks out, I couldn't eat anything, but yogurt and that took me 45 minutes to eat one cup. So, here's my story for your to ponder.
    I had a feeding tube for 1 year and glad I did. I used it everyday while I tried to get food down with no pain, and not much saliva. the pain last a few weeks, but the desire to eat, the taste buds and the saliva take some time, like months. I am being honest with you, your progress will be measured in months not weeks. Take it easy, it's gets BETTER.
    It really does, but this desease teaches you patience because the treatment, (although good) is a chore in itself to overcome.
    I feel blessed now that the treatment is so good, but at two weeks out, I was like WTF, I should be getting better now, FAST. Sorry to tell you that it just doesn't happen fast enough for us in recovery. So try to be very positive everyday and tell yourself, the cancer is gone and this slow eating, no saliva, bad taste stuff is the short term result of conquering this terrible desease.
    I wish you patience. As you'll hear on this site often, we are all different and you may be the one who gets better faster than others, but if not then you are simply "normal" like the rest of us patient survivors.
    Take it easy, relax and keep trying to eat. Eat soft stuff and in a time, who knows how long, it will get easier and food will taste good and you'll eat you favorite foods again.
    I hae steak, potatoes, salad and cookies last night so I know of what i speak.
    All the best and again be positive and practice patience...measure your improvement in months not weeks or days.
    Wishing you the best,
    Steve
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options

    Oh Billie...I feel for you....
    I'm just a few days more out of treatment than you are. Ask you Dr. about that silver sulphdiazine cream, everybody with really bad burns that used it, had good luck with it. I slathered on Aloe Vera during the day, and used Calendula cream for babies at night...For my tongue (which just quit hurting in the last few days), I used MuGard and my Magic Mouthwash...also, maybe rinsing your mouth out with whole milk...it gives the illusion of having spit for a little while afterwards. Don't try swallowing it yet, just rinse and spit.

    I asked about getting my PEG pulled a week ago, since I really never used it...my Onc said no.....to wait till I was done with chemo (I have two more treatments of that). My sisters got me a batch of body butters to use on my skin...they helped a lot.

    Improvments come by degrees....two weeks is just a drop in the bucket...I think you'll see some small turnarounds within the next week...just small things, but even then we rejoice!

    p

    soothie the burn
    Billie67,

    Phrannie is correct; I believe the Silver Sulfadiazine cream is by prescription. The stuff felt like new skin, no pain.

    Matt
  • Billie67
    Billie67 Member Posts: 898
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    Billie
    Was just wondering if your laryngeal CA was of the vocal cords or where? Also wondering what stage you were DX with? (If you don't mind sharing). Guess I was just trying to compare my treatments with yours. You can check my profile to see my DX and treatment, but I seem to have skipped the hardest part, the Erbitux....but sure want the rads to have knocked out all the CA!!! Welcome to the boards, these are the best survivors you'll EVER meet!!

    Mrs. Sarge,
    Yes mine is

    Mrs. Sarge,
    Yes mine is vocal cord and stage4 :-(
    For me radiation took more out of me than the erbitux. Radiation seems almost inhumane! There were days I was throwing up so bad, no energy and still had that dreaded appt to go to...ugh!
    I am so touched by all of the support here!
  • Billie67
    Billie67 Member Posts: 898
    Options

    Oh Billie...I feel for you....
    I'm just a few days more out of treatment than you are. Ask you Dr. about that silver sulphdiazine cream, everybody with really bad burns that used it, had good luck with it. I slathered on Aloe Vera during the day, and used Calendula cream for babies at night...For my tongue (which just quit hurting in the last few days), I used MuGard and my Magic Mouthwash...also, maybe rinsing your mouth out with whole milk...it gives the illusion of having spit for a little while afterwards. Don't try swallowing it yet, just rinse and spit.

    I asked about getting my PEG pulled a week ago, since I really never used it...my Onc said no.....to wait till I was done with chemo (I have two more treatments of that). My sisters got me a batch of body butters to use on my skin...they helped a lot.

    Improvments come by degrees....two weeks is just a drop in the bucket...I think you'll see some small turnarounds within the next week...just small things, but even then we rejoice!

    p

    Thank you so much! I will
    Thank you so much! I will for sure ask my dr about the silver cream. Never knew about the milk thing, I will for sure try it!
    I know 2 weeks is early to see anything big improvement wise but I'm over this already! I'm sure I'm preaching to the choir though.
  • Billie67
    Billie67 Member Posts: 898
    Options
    CivilMatt said:

    Matt's story
    Hi Billie67,

    I also belong to the Radiation Erbitux club. We are a minority here, but fellow bus riders treat us good.

    I went through two PEG tubes with the second one installed during week 5 of treatment; I thought for sure I wouldn’t have a way to eat for a few days. As it turned out, even though my throat became totally burned out (my rad onc said when she looked at my throat the “it was ablaze”) I never quit swallowing, so I was able too drink at least one meal a day, always. With swallowing a go, I had the PEG pulled at 2 weeks post.

    The burn was terrible around my neck, a complete open blister. I used Silver Sulfadiazine and found tremendous relief. I slathered that stuff on like a turtle neck. It messed up my shirt and pillow case but let me survive the burn very comfortably. I burned through weeks 6, 7 and 8.

    The main thing I experienced from the Erbitux was the acne covering my complete torso and face; I had enough acne for a dozen teenagers. My scalp got pretty dry and flaky.

    I only got the bad symptoms for the awful you need to hear from Tim6003 here on the site, he also took Erbitux and radiation and got terrible symptoms in spades. Things are looking better everyday. I actually ate a can of chili tonight, Ii could not believe it. On the taste scale it was a 2 (I never get above a 2) but I did not put it down, yell dog food or throw it out the window.

    I wish you complete recovery and a gentle healing process.

    Best,

    Matt

    Matt,
    Thank you, we sound

    Matt,
    Thank you, we sound like our trt was very similar. I got the erbitux acne too but only at first then I took doxycycline and it really helped.
    Chili!!! Oh one of my favorites! Can't wait for that! How long are you out from trt?
  • Billie67
    Billie67 Member Posts: 898
    Options
    hawk711 said:

    Hi Billie
    Looking at your post it took me back 2.5 years. I am that long out of treatment, but back when I was two weeks out, I couldn't eat anything, but yogurt and that took me 45 minutes to eat one cup. So, here's my story for your to ponder.
    I had a feeding tube for 1 year and glad I did. I used it everyday while I tried to get food down with no pain, and not much saliva. the pain last a few weeks, but the desire to eat, the taste buds and the saliva take some time, like months. I am being honest with you, your progress will be measured in months not weeks. Take it easy, it's gets BETTER.
    It really does, but this desease teaches you patience because the treatment, (although good) is a chore in itself to overcome.
    I feel blessed now that the treatment is so good, but at two weeks out, I was like WTF, I should be getting better now, FAST. Sorry to tell you that it just doesn't happen fast enough for us in recovery. So try to be very positive everyday and tell yourself, the cancer is gone and this slow eating, no saliva, bad taste stuff is the short term result of conquering this terrible desease.
    I wish you patience. As you'll hear on this site often, we are all different and you may be the one who gets better faster than others, but if not then you are simply "normal" like the rest of us patient survivors.
    Take it easy, relax and keep trying to eat. Eat soft stuff and in a time, who knows how long, it will get easier and food will taste good and you'll eat you favorite foods again.
    I hae steak, potatoes, salad and cookies last night so I know of what i speak.
    All the best and again be positive and practice patience...measure your improvement in months not weeks or days.
    Wishing you the best,
    Steve

    Thanks so much for all the
    Thanks so much for all the info. My onc said to think on a weekly basis not a daily basis so I don't get depressed. But I guess I need to think monthly instead.
    I will continue to try eating, I'm hungry! Even with the tube feedings I can't wait to eat!!
    Tell you what, I can't wait to eat steak and potatoes! Good for you!
  • Spazactaz
    Spazactaz Member Posts: 15
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    My tongue is insannnnnnnnely
    My tongue is insannnnnnnnely fried and painful.. definitely the worst side-effect. The foods that seem like they would go down super easily... pudding and yogurt, both killed it. The only things I could eat for a long time that didn't torture me were some soups, pastas, and scrambled eggs. About 4 weeks post, I could tolerate pudding, but still not yogurt (I'm 5 weeks now)! :(
  • Sue22
    Sue22 Member Posts: 99
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    Sending positive waves your
    Sending positive waves your way. Sue
  • Billie67
    Billie67 Member Posts: 898
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    Spazactaz said:

    My tongue is insannnnnnnnely
    My tongue is insannnnnnnnely fried and painful.. definitely the worst side-effect. The foods that seem like they would go down super easily... pudding and yogurt, both killed it. The only things I could eat for a long time that didn't torture me were some soups, pastas, and scrambled eggs. About 4 weeks post, I could tolerate pudding, but still not yogurt (I'm 5 weeks now)! :(

    Oh I so understand that! It
    Oh I so understand that! It feels like a burning sensation when food touches it. I'm the opposite, yogurt is better than pudding. I just finished today taking diflucan for thrush so maybe that will help a little. It did help clear up the white patches. Now my tongue is bright red.
    Good luck to you and your healing process.
  • Billie67
    Billie67 Member Posts: 898
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    Sue22 said:

    Sending positive waves your
    Sending positive waves your way. Sue

    Thank you Sue22

    Thank you Sue22