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nick770
nick770 Member Posts: 195
in Head and Neck Cancer #1
Hi everyone, my name is Nick I was dx last month with stage 4 scc hpv+ and started my treatments last week. I have been reading the posts and it sounds like a great bunch of folks on here. I'm 40 and have a wife and 3 children one of my biggest concerns is my weight i'm underweight 130lbs 5ft 8 inches and i burn calories very very fast. I'm so glad to have found these discussion boards.

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  • ditto1
    ditto1 Member Posts: 660
    #2
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    Welcome Nick
    Sorry you had to find this group but you will be blessed to have. I just started treatment for Base of Tongue tumor. Im sure the main thing you will hear about from the vets on this form will be information about feeding tubes, known as a PEG. Skiffin will likely post the Superthread where you can get lots of general information and specifically about the Peg. I have just had one Chemo down 10 lbs. Generally I was anti PEG but being this early in my treatment Im seriously consindering the Peg. Either way welcome again lot of good folks, prays and we are open 24 7. Kick back and meet your new friends who will be responding to your question.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    Hey Nick
    Eat everything in sight. I had lost a bunch of weight, as before my treatment started I couldn't swallow well enough to get in the requisite calories. Once chemo started, and my tumor started regressing, that actually improved. So I ate like crazy during chemo. I actually ate a cheesecake every two days. Gained twenty pounds during chemo, before radiation started, and managed to keep my weight up during rads as well just by making sure I got enough calories in. I was able to do this without a PEG tube, but many do require a PEG to get the job done. Whatever it takes....

    Glad you found the forum. Have you located the superthread?

    Pat
  • nick770
    nick770 Member Posts: 195
    #4
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    super thread
    thanks for the warm welcomes.

    Yep i found the super thread and i did get the tube "installed" about 2 weeks ago. it still hurts some days and it feels full after 1 can of stuff.
  • Grandmax4
    Grandmax4 Member Posts: 723
    #5
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    nick770 said:

    super thread
    thanks for the warm welcomes.

    Yep i found the super thread and i did get the tube "installed" about 2 weeks ago. it still hurts some days and it feels full after 1 can of stuff.

    900 calories
    Nick, you're going to be fine, trust your surgeon and his team and trust God

    The is a mix ( I can only find it on Amazon ) called Scandishake that adds 900 calories per serving...it is so yummy, when blended with ice it taste just like a frosty or milkshake
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    nick770 said:

    super thread
    thanks for the warm welcomes.

    Yep i found the super thread and i did get the tube "installed" about 2 weeks ago. it still hurts some days and it feels full after 1 can of stuff.

    I was like you....I started at 93 lbs and knew I
    had no weight to spare. Glad to hear you got your PEG in place already. I got one before I even started treatment. So far I've maintained my weight after 5 weeks of amifostine and rads, plus two chemo treatments.

    You hit the jackpot finding this group of people......the knowledge and the support here can't be found anywhere else on the internet.

    p
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #7
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    phrannie51 said:

    I was like you....I started at 93 lbs and knew I
    had no weight to spare. Glad to hear you got your PEG in place already. I got one before I even started treatment. So far I've maintained my weight after 5 weeks of amifostine and rads, plus two chemo treatments.

    You hit the jackpot finding this group of people......the knowledge and the support here can't be found anywhere else on the internet.

    p

    A road less traveled!!
    Hey, Nick, this is definitley going to be the hardest thing you have ever had to do; but you can do it! Utilize your support system; try to take in as much calories as you can; most importantly stay hydrated! I sent you my contact info; feel free to txt or call!! God Bless!

    Charles
  • Ingrid K
    Ingrid K Member Posts: 813
    #8
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    Irishgypsie said:

    A road less traveled!!
    Hey, Nick, this is definitley going to be the hardest thing you have ever had to do; but you can do it! Utilize your support system; try to take in as much calories as you can; most importantly stay hydrated! I sent you my contact info; feel free to txt or call!! God Bless!

    Charles

    Welcome !
    Hello Nick,welcome to the group. Glad you already found the Superthread--very good info in there. (It is a labor of love by one of our posters "Sweetblood" a/k/a Dawn). also you can go back and read older posts to get good info. You can do this. As others have said, not easy but very doable and you are still very young. Stay strong, keep coming back here for info and to ask any questions you have. I am glad you already have a feeding tube installed, but you will definitely need to use more than 1 can. I had to have 6-7 cans a day and I weighed lots more than you. Try and slow down the tube feedings and you won't feel so full. Best of Luck to You !
  • patricke
    patricke Member Posts: 570
    #9
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    Hey Nick, welcome aboard,
    Hey Nick, welcome aboard, I'm sorry that you have to be here, but you've been drafted into a great crew, we're all fierce warriors fighting our beasts together. The journey begins, remember, some days will be better than others, and no matter what, also remember that You Can Do This (repeat that to yourself as needed, and it will be needed). We are here with and for you. By the by, I was diagnosed with stage 4 BOT awhile back, and went through recovery a long time ago; I have been able to get back into normal activities and routines. It takes time, and patience; Hang In There!

    PATRICK
  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
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    Grandmax4 said:

    900 calories
    Nick, you're going to be fine, trust your surgeon and his team and trust God

    The is a mix ( I can only find it on Amazon ) called Scandishake that adds 900 calories per serving...it is so yummy, when blended with ice it taste just like a frosty or milkshake

    I just ordered some of this....
    thanks Grandma!! :)

    p
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #11
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    patricke said:

    Hey Nick, welcome aboard,
    Hey Nick, welcome aboard, I'm sorry that you have to be here, but you've been drafted into a great crew, we're all fierce warriors fighting our beasts together. The journey begins, remember, some days will be better than others, and no matter what, also remember that You Can Do This (repeat that to yourself as needed, and it will be needed). We are here with and for you. By the by, I was diagnosed with stage 4 BOT awhile back, and went through recovery a long time ago; I have been able to get back into normal activities and routines. It takes time, and patience; Hang In There!

    PATRICK

    A Hearty Welcome
    Hi Nick,

    Too bad you are able to join the club but as you've already noticed everyone is quite helpful and have a good positive attitude.

    Yea, the weight thing may pose a small problem but Phrannie has been doing really well and hasn't lost a pound yet. Just like all the rest, get as much high calorie food and drink in you beforehand. You may not gain a pound but it should be fun eating whatever you want.

    Have you noticed that a lot of the people here are survivors? Myself included. When I joined I was in the middle of treatment and now I'm done. Just do what's in front of you and the time will fly by and next thing you know you'll be posting as another survivor.

    Keep the positive attitude, it really helps with recovery.

    Tom
  • Grandmax4
    Grandmax4 Member Posts: 723
    #12
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    phrannie51 said:

    I just ordered some of this....
    thanks Grandma!! :)

    p

    I hope
    you like it , and that it helps keep your weight even.
    Finally, put up a picture, with the three reasons I strive to live ( along with the Hubs and my son & daughter, of course)
  • Grandmax4
    Grandmax4 Member Posts: 723
    #13
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    phrannie51 said:

    I just ordered some of this....
    thanks Grandma!! :)

    p

    My mistake
    each scandishake provides 600 calories per 8oz glass of milk, sorry for the incorrect information in my post to Nick
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
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    Welcome
    I also got a PEG installed before tx (not given a choice), and used exclusive from the end of week #1-#8, and a little beyond. Good safety net to have in place. Soap and water is advised to keep the area clean (Dial is good).

    Nick, don't take this wrong, but I say this to most all newbies: You're gonna survive this thing, so get used to it! Yeah, this is 2012, and we all survive the initial tx, and beyond. The going will get as the going gets, Nick. Everybody's different. Some of us had real bad times, and others made it thru better than others. The Drs will keep it all acceptable to you- that is very much part of their jobs, and they know it. Just keep them in the Loop as to how you're handling it, and it'll all be okay.

    Believe

    kcass
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
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    Welcome Nick,
    Looks like you have already been any good advice I can offer at the moment.

    At 130#, I think you've made an excellent choice on getting the PEG.

    Best,
    John
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #16
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    Skiffin16 said:

    Welcome Nick,
    Looks like you have already been any good advice I can offer at the moment.

    At 130#, I think you've made an excellent choice on getting the PEG.

    Best,
    John

    Welcome Nick
    Nothing to add ...all the advice from all the above posts covers everything...sorry you had to join our club ....but you did find a great bunch of folks.

    Keep us posted ...Laralyn and Phrannie are almost at the end of their treatments and their posts are spot on as to what to expect for the norm...

    USE that peg tube and watch your weight.

    Best,

    Tim
  • nick770
    nick770 Member Posts: 195
    #17
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    Tim6003 said:

    Welcome Nick
    Nothing to add ...all the advice from all the above posts covers everything...sorry you had to join our club ....but you did find a great bunch of folks.

    Keep us posted ...Laralyn and Phrannie are almost at the end of their treatments and their posts are spot on as to what to expect for the norm...

    USE that peg tube and watch your weight.

    Best,

    Tim

    thanks everyone for the warm
    thanks everyone for the warm welcome, I have spent some time googling and reading posts and i'd have to say this is by far the best group of real people I have come across. You guys are true heroes to me , I've been keeping an eye on Phrannie's posts too

    thanks on the tube tips, a friend of mine let us borrow their slow juicer and it has been really good for me my wife has been making me these healthy juices i don't imagine they taste good but they pour down the tube easy and make me feel pretty good.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #18
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    nick770 said:

    thanks everyone for the warm
    thanks everyone for the warm welcome, I have spent some time googling and reading posts and i'd have to say this is by far the best group of real people I have come across. You guys are true heroes to me , I've been keeping an eye on Phrannie's posts too

    thanks on the tube tips, a friend of mine let us borrow their slow juicer and it has been really good for me my wife has been making me these healthy juices i don't imagine they taste good but they pour down the tube easy and make me feel pretty good.

    Juicer...
    Make sure you check the SuperThread, and Sweetblood22 (Dawn) has a lot of posts on juicers and recipes I believe.

    JG
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #19
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    Welcome
    Hi Nick,

    It sounds like things are happening fast for you; you’ll be finished before you know it. Like others said, eat and enjoy. I didn’t lose my taste until around week 3, so eat while you can. The PEG tube will carry the weight when necessary. I don’t want you to worry about the weight, just get plenty of calories and you will be fine. I was overweight but managed to stay stable during treatments and don’t forget the anti-nausea medication, if needed. It seems that every problem I had the doctors or this forum had an answer.

    Best of luck,

    Matt

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