Just got back from the Oncologist's....

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phrannie51
phrannie51 Member Posts: 4,716
edited July 2012 in Head and Neck Cancer #1
I have thrush on my tongue, cheeks, and throat.... and ulcers from one end of my bottom lip to the other...I've been doing the L-Glutamine and it's soothing for 10 minutes...They sent me to the pharm for more MM (they said their receipe has enough nystatin to do the thrush), and liquid Hydrocodone (which, after doing the MM, I quickly tossed 10 mls down my throat....OMG it put me to my knees....Hydrocodone is a TUBE MED!!! My eyes are still watering...LOL). Oh, and she told me to do Aloe Vera in my mouth...just hold it on the sores, and then swallow it....have a feeling Aloe going to sting, too.

I'm 100% tube eating and drinking...except now and then I fill my tube syringe with water and let that dribble into my mouth...dry mouth makes the pain of all this so much worse.

I know I'm sounding like a baby, but honest to god, this is the worst I've felt since everything started...and there's disappointment because I'm in the last 6 weeks of treatment...I'm hoping like hell that I don't finish treatment like I started treatment....with mishaps, "one in a million" happenings, etc...just a little paranoid.

p
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  • ditto1
    ditto1 Member Posts: 660
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    Troubles on the Bus.....
    So sorry your having all the mouth problems, its amazing what a day or two can do. And no you are not a Baby you are one of the Warriors and have been from day one. I have had the thrush it sucked. Now after RAD No.10 my thoart is hurting, I have the mouth sores and looks like I may be on gthe beginning of the liquid diet part of this journey. Im going to try to be Pegless in Seattle LOL or Kansas so hoping it does not get to much worse. Either way Im sure we will get thru this because as we both know joining the journey pretty much at the same time that it was never going to be easy and with the help of all those that have gone before us we at least has some idea of what could happen. So I know you will come out the other side of this as you have the other trials you faced during this time in your life. And as I said before you have been an inspiration to all of us and if anyone can survive this you can. But yes it Suckssssssssssssssssssssssssssssss
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
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    So sorry you are feeling so
    So sorry you are feeling so bad. Hopefully the meds will kick in and give you some relief. You have been such an inspiration to me thru my treatments and have provided me with so much info. By no means are you sounding like a "baby". Anyone going thru this knows how tough it is. Sending prayers your way.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    ditto1 said:

    Troubles on the Bus.....
    So sorry your having all the mouth problems, its amazing what a day or two can do. And no you are not a Baby you are one of the Warriors and have been from day one. I have had the thrush it sucked. Now after RAD No.10 my thoart is hurting, I have the mouth sores and looks like I may be on gthe beginning of the liquid diet part of this journey. Im going to try to be Pegless in Seattle LOL or Kansas so hoping it does not get to much worse. Either way Im sure we will get thru this because as we both know joining the journey pretty much at the same time that it was never going to be easy and with the help of all those that have gone before us we at least has some idea of what could happen. So I know you will come out the other side of this as you have the other trials you faced during this time in your life. And as I said before you have been an inspiration to all of us and if anyone can survive this you can. But yes it Suckssssssssssssssssssssssssssssss

    Mr. Ditto.....you always make me feel better....
    I laughed right out loud over "Pegless in Seattle"....two weeks ago I asked the Onc about taking the Peg out, cuz I had never needed it...I may be all liquid diet, but was managing to get it down my throat...He said no, "you might as well hang on to it till you're done with the rest of the chemos"....honest to gawd, I don't know what I'd be doing right now without the darn thing!! Everything stings so bad, even water...

    You'll hang tough with no Peg unless you absolutely need it. I know this from being on the bus with you for so long...everything we've had to face you have taken in.... looked at it from every aspect, cataloged it in your mind, rated it...and placed it on a shelf. The PEG is somewhere on those mind-shelves to be used if it's needed, or discarded after treatment. I think the Hydrocodone is kicking in, did that even make sense.

    Oh....How long did it take you to get rid of the Trush?

    p
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
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    So sorry you are feeling so
    So sorry you are feeling so bad. Hopefully the meds will kick in and give you some relief. You have been such an inspiration to me thru my treatments and have provided me with so much info. By no means are you sounding like a "baby". Anyone going thru this knows how tough it is. Sending prayers your way.

    No phrannie
    you're not a baby!! That's what these boards are for to commiserate and lift each other up....oh my it doesn't sound good, but it'll be better soon!!! Hang on girl!!! You're gonna make it!!!
  • ditto1
    ditto1 Member Posts: 660
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    Mr. Ditto.....you always make me feel better....
    I laughed right out loud over "Pegless in Seattle"....two weeks ago I asked the Onc about taking the Peg out, cuz I had never needed it...I may be all liquid diet, but was managing to get it down my throat...He said no, "you might as well hang on to it till you're done with the rest of the chemos"....honest to gawd, I don't know what I'd be doing right now without the darn thing!! Everything stings so bad, even water...

    You'll hang tough with no Peg unless you absolutely need it. I know this from being on the bus with you for so long...everything we've had to face you have taken in.... looked at it from every aspect, cataloged it in your mind, rated it...and placed it on a shelf. The PEG is somewhere on those mind-shelves to be used if it's needed, or discarded after treatment. I think the Hydrocodone is kicking in, did that even make sense.

    Oh....How long did it take you to get rid of the Trush?

    p

    Only a few days
    if I remember right, I had the Nystitin (spell check) seems it was only about a week, mine was from the Cisplatin and by the 2nd treatment they had the changes in place that my side effects were not quite as bad. Thought I would tell you I am enjoying my first cup of Magic Mineral Broth, Diane made be a batch and froze it about 2 weeks ago. Now that my mouth is similiar to yours sore thoart/sores etc. decided to give it a try. Very good stuff, I told Diane it taste like BBQ to me, but its good and nice to eat something that resembles food not just Boost. Keeping ya in our Prayers and yes you made total sense or at least to me.
  • NoDuck
    NoDuck Member Posts: 134
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    You're A Tough As They Come
    Hang in there, Phrannie! It's been a rough few days for several of us.

    Hubby is also one of those that if something's going to go wrong or be unusual or unique or puzzling or uncommon, it happens to him. Hit with all ya got. That's all we can do.

    Prayers your way.

    Deb
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    feel better
    Hi phrannie,

    I am sorry to hear about you getting Thrush and all the symptoms which accompany it. I hope all the meds give you relief while this runs its course. Good thing you didn’t pop your PEG early. I took the liquid hydrocodone down the throat with my MM once, to knock out the pain and get to sleep.

    I never did use the syringe down the mouth, I missed that in the instructions or did you make that up yourself.

    As for sounding like a baby, some of the worst pains I’ve every experienced are directly related to this bus ride and you told me once I wasn’t being a baby when I shared, so I am telling you the same. My heart bleeds for you and all of us when I read the painful threads.

    Be better, get better, you are almost finished.

    Best,

    Matt
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    BassAckwards...
    You decided to approach this entire ordeal backwards, LOL....

    You had it easy upfront, minimal complications.... Now when most are at a point of starting to turn around for the better...you decide to go up and move the wrong way...LOL.

    I know it's not funny...just know that it'll pass and you'll live a cancer free life for the sacrifice now.

    BTW, I loved the liquid oxy and hydro..., pain free for a short time.

    Best,
    John
  • sun101
    sun101 Member Posts: 8 Member
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    Not A Baby
    You are tough think for what you are going through. You are going to be just fine. Every day is one day closer to being done with this. I'm just getting started. At leasgt I know i'm not in this alone. Everyones post helps me so much. Honesty sometimes hurts but gets me perpared for what is to come. I will be praying for you. Sorry For everything you are going through but it will all pay off in the end.
  • nick770
    nick770 Member Posts: 195
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    Sorry you are going through
    Sorry you are going through this, hang in there and I'm glad you got to see the oncolo dotor to get some resolution
  • Laralyn
    Laralyn Member Posts: 532
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    I agree--not a baby!
    You've taken three punches in the gut! No one can blame you for being worn out and tired of this bus ride. It sucks, and I hope it gets better for you soon.

    I'm so glad you kept the PEG! I understand the desire to get rid of it. I can hardly wait to get rid of it too.

    The thrush really SUCKS, at least it does for me. It changes my whole mouth and seems to make whatever I'm feeling feel that much worse. Hopefully the Nystatin in the MM will fix it for you but if it doesn't, don't hesitate to ask for something stronger. Thrush should be the least of your worries right now--you have enough going on.

    Hang in there and stay tough. You're closer to the end of the bus ride than you ever have been, and you're handling it like a champ!
  • hwt
    hwt Member Posts: 2,328 Member
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    Laralyn said:

    I agree--not a baby!
    You've taken three punches in the gut! No one can blame you for being worn out and tired of this bus ride. It sucks, and I hope it gets better for you soon.

    I'm so glad you kept the PEG! I understand the desire to get rid of it. I can hardly wait to get rid of it too.

    The thrush really SUCKS, at least it does for me. It changes my whole mouth and seems to make whatever I'm feeling feel that much worse. Hopefully the Nystatin in the MM will fix it for you but if it doesn't, don't hesitate to ask for something stronger. Thrush should be the least of your worries right now--you have enough going on.

    Hang in there and stay tough. You're closer to the end of the bus ride than you ever have been, and you're handling it like a champ!

    Poor thing
    Hate to hear what you are going through. I told Laralyn, I noticed an improvement in the thrush after 2 days on meds. I can sympathize with you on the lip sores. Had those from the 1st week of tx and they were horrific. In fact, worst memory of the entire tx. Wish I could offer solution for you, I just loaded them up with Auqaphor and cried. Between the hydrocodone and fentynal patches I slept thru as much of it as I could. Seriously, for a couple of weeks I only got up to go to tx and use the feeding tube. Wouldn't have done that much if it hadn't been for my husband forcing me to. If any consolation, my lips started to improve right after tx stopped and by week two sores were gone. I know you were down below 90 lbs. so make good use of that PEG.
    My heart goes out to you.
  • Billie67
    Billie67 Member Posts: 898
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    hwt said:

    Poor thing
    Hate to hear what you are going through. I told Laralyn, I noticed an improvement in the thrush after 2 days on meds. I can sympathize with you on the lip sores. Had those from the 1st week of tx and they were horrific. In fact, worst memory of the entire tx. Wish I could offer solution for you, I just loaded them up with Auqaphor and cried. Between the hydrocodone and fentynal patches I slept thru as much of it as I could. Seriously, for a couple of weeks I only got up to go to tx and use the feeding tube. Wouldn't have done that much if it hadn't been for my husband forcing me to. If any consolation, my lips started to improve right after tx stopped and by week two sores were gone. I know you were down below 90 lbs. so make good use of that PEG.
    My heart goes out to you.

    You are not a baby by any
    You are not a baby by any means! That is some painful stuff, just got over a nasty case of thrush myself. 2 rounds of diflucan and finally it's gone! Eating will come again. My RN at oncologist said to eat papaya as it's got soothing properties. It did seem to help and didn't hurt anymore than my mouth already hurt and it slides right down your throat nicely. Good luck to you and I wish for speedy healing!
  • katenorwood
    katenorwood Member Posts: 1,912
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    Meds to ease the pain
    Phrannie,
    Oh girl thrush plainly sucks ! And as the others have said NO you are not a baby with these issues. Don't be afraid of using those liquid pain meds...lol you did make sense after the med kicked in. I still occassionally need to use these as my throat still swells due to cancer issues and lymphedema. I'm sending as much strenghth as I can in your direction....and a gigantic hug your way ! Katie
  • ooo
    ooo Member Posts: 105
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    "Never never never never
    "Never never never never give up. PEG your way out of it." - Winston Churchill & Dre
  • Ingrid K
    Ingrid K Member Posts: 813
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    Mr. Ditto.....you always make me feel better....
    I laughed right out loud over "Pegless in Seattle"....two weeks ago I asked the Onc about taking the Peg out, cuz I had never needed it...I may be all liquid diet, but was managing to get it down my throat...He said no, "you might as well hang on to it till you're done with the rest of the chemos"....honest to gawd, I don't know what I'd be doing right now without the darn thing!! Everything stings so bad, even water...

    You'll hang tough with no Peg unless you absolutely need it. I know this from being on the bus with you for so long...everything we've had to face you have taken in.... looked at it from every aspect, cataloged it in your mind, rated it...and placed it on a shelf. The PEG is somewhere on those mind-shelves to be used if it's needed, or discarded after treatment. I think the Hydrocodone is kicking in, did that even make sense.

    Oh....How long did it take you to get rid of the Trush?

    p

    nasty thrush... go away already
    Oh Phrannie,

    I do hope that the Hydrocodone is kicking in for you. That will let you get some rest as it does help with the pain. glad you went ahead and got the PEG when you did; it was a definite life-saver for me and why I recommend it to everyone.

    and you are certainly not a whiner....hell, you're one of the strongest women I know !
    So, take the meds and feel better.
    I hope by the time you see this tomorrow you will be doing much much better.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    HUGS
    Hugs to you Phrannie. You can do this. You KNOW you can. You are one tough gal.

    Deb
  • NitaNita
    NitaNita Member Posts: 56
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    D Lewis said:

    HUGS
    Hugs to you Phrannie. You can do this. You KNOW you can. You are one tough gal.

    Deb

    Sorry..
    I am sorry you are feeling bad! Hang in there you are very tough...Praying for you!
  • NitaNita
    NitaNita Member Posts: 56
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    D Lewis said:

    HUGS
    Hugs to you Phrannie. You can do this. You KNOW you can. You are one tough gal.

    Deb

    Sorry..
    I am sorry you are feeling bad! Hang in there you are very tough...Praying for you!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    phrannie
    how much of the ulceration do the feel is thrush? A whole lot of thrush is resistant to nystatin, so it is a mistake to assume nystatin will effecrively treat this component of things. diflucan doesnt cost much, and is way more effective for this. Now, if your oral ulcers are chemo related, thats a different thing, but I wouldnt trust the nystatin.

    heres to better times