Saw the Oncologist today....and am scheduled for a PET scan

phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1
on November 27th....gawd that is a long time away! Onc checked me all over, said my salivary glands are very inflamed, but thinks the further way from chemo I get, they will get better (I'm telling you guys, these glands make me look like a squirrel packing nuts away in my cheeks and throat for winter).

Onc won't pull my tube till I gain 5 lbs....if I hit 90 before my next appointment to get my port flushed (a month from now), I can come in early and they'll make arrangements to get my tube pulled. I told him I wasn't going to be using the darn thing, but it's like he's bribing me to gain weight...(he really doesn't have to, I'm eating anything I can comfortably eat now). Learned yesterday, that acorn squash HURTS...weird, you'd think that would go down easy...but it stings so bad!

When he checked my mouth he says he thinks I have a case of thrush going, so got another prescription of Diflucan for that...hopefully this will kick in, and my mouth will quit stinging when I eat.

Busy week...saw the ENT Monday, Onc today....now I don't have to go see any Dr.s for a whole month!! I'll be so lonely LOLOLOL...

p

Comments

  • nick770
    nick770 Member Posts: 195
    #2
    Yea i agree Nov 27 is a ways
    Yea i agree Nov 27 is a ways out, but by then i imagine things will be calmer with your salivtory glands.

    Acorn squash hurts? That is very odd but going through the food tasting again process my self i can't say I'm surprised. Oh to be able to eat pre TX , wouldnt that be wonderful?

    Are you eating lots of protien to help with healing? Im not a nutrioanalist but i have heard protien really helps (it may help you gain some extra pounds too)

    Hang in there :)
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #3
    nick770 said:

    Yea i agree Nov 27 is a ways
    Yea i agree Nov 27 is a ways out, but by then i imagine things will be calmer with your salivtory glands.

    Acorn squash hurts? That is very odd but going through the food tasting again process my self i can't say I'm surprised. Oh to be able to eat pre TX , wouldnt that be wonderful?

    Are you eating lots of protien to help with healing? Im not a nutrioanalist but i have heard protien really helps (it may help you gain some extra pounds too)

    Hang in there :)

    Hi Phrannie....
    LOL on the squirrel commment.

    90lbs....??!! Good grief girl you need some MEAT, as in prime rib ....

    I still can't eat bananas .they sting??

    Looking foward to hearing good news on the Nov 27th PET!!

    best,

    Tim
  • blackswampboy
    blackswampboy Member Posts: 341
    #4
    getting rid of the tube
    just curious...if he won't pull it until you gain weight, and eating still causes pain...why don't you supplement eating with using the tube?
    I mean, using the tube you could double your daily calories, pick up the 5 lbs., and then get the tube pulled.

    I'd love to be eating again too and get rid of the tube...but right now the thought of trying to get 2500 calories via mouth is too painful to consider. it'd be a full-time job, trying to find enough things I could eat and then washing every itty-bitty little bite down with water... bah. at least with the tube I know exactly how many calories I'm getting, and don't have to keep track of nutrients.
    I don't love the thing, but whatever it takes to get my pounds back.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    acorn - nuts
    Hi Phrannie,

    Of course you look like a squirrel (ACORN squash). It’s getting late, that’s all I got.

    I put a few table spoons of canola oil in my smoothies to add a few hundred quick calories, but like Nick said get some protein ( I use protein powder in my smoothie also).

    My wife (Candy) has been eating bacon and (heirloom) tomato sandwiches every day for weeks and today for the first time the bacon smelled just like old times. So, I grabbed a piece and ate a couple of bites, it was virtually like normal, I kid you not, so I put it down and walked away. I could not believe how good it tasted and did not want to jinx anything. After a few minutes I calmed down and went looking for the rest of the slice of bacon. It was real; it tasted (and felt) almost like old timey normal.

    I have been eating tomatoes with salt, black pepper, cayenne pepper and olive oil for the last two weeks. The cayenne pepper real sets off my taste buds in a good way, almost like waking them up. I don’t want to get to bold, but I think they are (taste buds) starting to work.

    Here we are talking about food again, I am sorry.

    You get better soon,

    Matt
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #6
    Win the Pet Scan Race.
    I win the race to the Pet Scanner. My slot is next week. No more to be said about that until I get the results. (My treatment ended in Feb, so it's been a long time.) Nevertheless, I hope we both in turn have NED'S. Rick.
  • yensid683
    yensid683 Member Posts: 349
    #7
    ToBeGolden said:

    Win the Pet Scan Race.
    I win the race to the Pet Scanner. My slot is next week. No more to be said about that until I get the results. (My treatment ended in Feb, so it's been a long time.) Nevertheless, I hope we both in turn have NED'S. Rick.

    maybe, maybe not
    I have mine this coming Tuesday the 2nd! I'm hoping for a declaration of NED! So far the primary tumor site was scoped twice and the ENT said that he could see no visual evidence of it, and the lymph nodes that were involved are no longer palpable - haven't been for some time. I'm thinking good thoughts and hoping it comes up NED.

    I'm also happy to report that I've stopped using my PEG, taking over 3000 calories a day by mouth, I eat 6 smaller meals a day and it takes so much longer to eat than I remember, but I'm gaining weight and have high hopes that the revisit with the onc on the 10th will see me gaining a second belly button and losing my 'tail'

    Let's hope all 3 of us get great news!

    Peter
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #8
    blackswampboy said:

    getting rid of the tube
    just curious...if he won't pull it until you gain weight, and eating still causes pain...why don't you supplement eating with using the tube?
    I mean, using the tube you could double your daily calories, pick up the 5 lbs., and then get the tube pulled.

    I'd love to be eating again too and get rid of the tube...but right now the thought of trying to get 2500 calories via mouth is too painful to consider. it'd be a full-time job, trying to find enough things I could eat and then washing every itty-bitty little bite down with water... bah. at least with the tube I know exactly how many calories I'm getting, and don't have to keep track of nutrients.
    I don't love the thing, but whatever it takes to get my pounds back.

    got it, use it
    i so agree, if you have it use it for the added calories, eat all you can by mouth but add add and add more calories.

    the nutritionist in our local support group believe using any kind of high calorie foods (ice creme as an example) just to get weight can back on. if it causes some problems they can be dealt with after the weight gain.

    i will double the thought "whatever it takes to get pounds back on your body" but i over you triple your calories input with your tube and mouth

    if you can't eat alot at one time eat more and eat more often, plus eat even more before naps and bed time

    good luck

    john
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #9
    blackswampboy said:

    getting rid of the tube
    just curious...if he won't pull it until you gain weight, and eating still causes pain...why don't you supplement eating with using the tube?
    I mean, using the tube you could double your daily calories, pick up the 5 lbs., and then get the tube pulled.

    I'd love to be eating again too and get rid of the tube...but right now the thought of trying to get 2500 calories via mouth is too painful to consider. it'd be a full-time job, trying to find enough things I could eat and then washing every itty-bitty little bite down with water... bah. at least with the tube I know exactly how many calories I'm getting, and don't have to keep track of nutrients.
    I don't love the thing, but whatever it takes to get my pounds back.

    opps.... ditto
    opps on the double post


    but i might just ditto what myself has said


    self
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Here's To Good Scans....
    Hoping you get nothing short of an outstanding report P...

    Also, are you sure those glands aren't your induction into the "Turky Neck Club"...?

    Timing is about right...., next you'll be having L'Hermette Syndrome tingles... Those shocking, numbing sensations down your arms and legs when you bend your head forward and touch your chin to your chest.

    Both eventually go away for tyhe most part...you can try massage for the lymph glands also.

    Best,
    John
  • katenorwood
    katenorwood Member Posts: 1,912
    #11
    Lots of us come November !
    Hello Phrannie !
    Sounds like everything is moving positively forward...hurray ! I'm so glad you are eating, and thrush is a pain...but do-able to work through. You girl are such a ray of sunshine....keep it going, almost there ! Katie
  • VanessaSLO
    VanessaSLO Member Posts: 283
    #12
    katenorwood said:

    Lots of us come November !
    Hello Phrannie !
    Sounds like everything is moving positively forward...hurray ! I'm so glad you are eating, and thrush is a pain...but do-able to work through. You girl are such a ray of sunshine....keep it going, almost there ! Katie

    Let the November be the best month of this year!
    Oh, Phrannie, I can't believe that time is passing so fast... Already your first PET in Nov.

    My dad will have his first scope in Nov 14th (I think this will not be PET scan yet, because it will be two months post tx, not three).

    Thinking of you! Enjoy and try to relax now...
  • I am Blessed
    I am Blessed Member Posts: 5
    #13
    Phrannie one of my friends
    Phrannie one of my friends is a dietician and when I was trying to get off my peg tube she had me drinking carnation instant breakfast three times a day with the amount of milk it calls for doubled. It worked well when I wasn't taking in enough calories with just food and taste better than boost or ensure. Hope it works for you.
  • Barbara B
    Barbara B Member Posts: 40
    #14
    I am Blessed said:

    Phrannie one of my friends
    Phrannie one of my friends is a dietician and when I was trying to get off my peg tube she had me drinking carnation instant breakfast three times a day with the amount of milk it calls for doubled. It worked well when I wasn't taking in enough calories with just food and taste better than boost or ensure. Hope it works for you.

    Calories
    My husband's dietician had him adding carnation instant breakfast to cans of ensure to keep his weight up. He also adds ice cream to his coffee in the morning for a few extra calories.

    Keep eating!
  • pattyanny
    pattyanny Member Posts: 544
    #15
    Good for you Phrannie! I
    Good for you Phrannie! I agree you should put on the lbs by eating AND using the tube while you still have it! You can do it! Time flys when you're having fun- huh? Lol! That thrush is awful,but hopefully short-lived! Wishing you well and eat, eat, eat!
    My PET/CT is scheduled for tomorrow morning...ugh! Here we go again!
    What would we do without our constant Dr. "dates"! Lol!
    Love & Prayers,
    Patty
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #16
    pattyanny said:

    Good for you Phrannie! I
    Good for you Phrannie! I agree you should put on the lbs by eating AND using the tube while you still have it! You can do it! Time flys when you're having fun- huh? Lol! That thrush is awful,but hopefully short-lived! Wishing you well and eat, eat, eat!
    My PET/CT is scheduled for tomorrow morning...ugh! Here we go again!
    What would we do without our constant Dr. "dates"! Lol!
    Love & Prayers,
    Patty

    Good news
    Phrannie I am so glad you are coming out the other side of this. I would do whatever I could to gain the wait. Using the tube a bit to gain it quicker may be a great option. Girl you are tiny.
  • hwt
    hwt Member Posts: 2,328 Member
    #17
    VivianLee5689 said:

    Good news
    Phrannie I am so glad you are coming out the other side of this. I would do whatever I could to gain the wait. Using the tube a bit to gain it quicker may be a great option. Girl you are tiny.

    P51
    My ONC wanted to keep my tube in 12 weeks after tx until I had my 1st CT scan. Why, I don't know because I sure weighed more than 90 lbs. I had it yanked anyway, no regrets but I will say at 4+ months out I continue to lose weight and you can't afford to do that. I lose about one or two pounds a week. Still some burning on my tongue and sometimes just too darn much trouble to eat since I don't get hungry. My first PET is Oct 5th. Everytime the anxiety starts I remind myself I have done everything I can and it will be what it will be. That calming effect lasts a couple of seconds.
  • ditto1
    ditto1 Member Posts: 660
    #18
    Before you go
    back to the Doc weigh yourself, if short a pound or two, slip some weights in your pocket to get up to 90lbs and that way no debate they will pull the PEG. LOL... As far as Nov 27th being so far away, seems like just yesterday you and I were asking when can we get this party started, and a blink of an eye later here we are. I guess thats the way life works, before I retired someone would say this has been a long day at work, and I would think true but where did the 37 years go since I started working. Get to the point Ditto... well time flys so before you know it Nov 27th will come and go and everyone can clear room in their kitchens to do the P51 happy dance to celebrate your NED. I too came down with Thrush this week, been taking the same med you are, I hate Thrush and Constipation almost as bad as Cancer.
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #19
    You are doing great but that
    You are doing great but that does seem like a long time until the pet scan. Eat, eat, eat to gain those 5 pounds. It will be so worth it. Hopefully time goes fast because my pet scan is Oct 23rd and that seems long enough. You will be dancing around your kitchen before you know it.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #20
    I honestly am getting a lot of calories by eating....
    It's just that I've only been able to eat much in the last week or so. For breakfast I had a small piece of blueberry oven french toast with a huge chunk of butter and some syrup on it....for lunch I ate a whole can of Progesso Chicken Pot Pie soup, with two pieces of French bread slathered in butter for dunking into the broth, and a glass of milk....I'm stuffed to the gills. The Diflucan must be kicking in, since nothing I had for lunch stung at all...:)(makes me so happy to get overfull on real food)....

    p

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