Diagnosed 10/05/11

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Hey Everyone!

I have been a ghost on this board since the first day of treatment and you all have helped me so much. I have been meaning to post, but I had some complications with treatment and then I got to the point I didn't even feel like being on the computer- I'm sure you understand. I had a diagnosis of Squamous Cell Carcinoma of the Tonsil on 10/05/11, it was T2N2bM0 so I was staged at III. It was also HPV+. I had a very great prognosis with over 85% and even better after the HPV confirmation. I had two chemo therapies on weeks 1 and 4 with Cisplatin and 35 radiation treatments. I had a feeding tube placed on 12/20/11 (great Christmas present!) and then I was hospitalized with a DVT on 12/27/11 and have been on Lovenox ever since. My last radiation was 01/05/12 and I am still pretty dependent on the feeding tube. I have been able to eat macaroni and cheese, fries, pizza (with some pain), salad and drink some juices and soda with no issue. My taste buds did not suffer too much, my saliva however has diminished. I'm also still having a lot of mucous and phlegm issues and use a suction machine. I just wanted to introduce myself, give a little medical background and thank EVERYONE for being so encouraging. You truly helped me every time I panicked over a medical issue or felt down in the dumps.

With Love,
Amanda

PS. I'm a little over 4 months from my 30th birthday, married to a wonderful man and the mom of a two year old little girl and two awesome step-sons. They have been my motivation to kick this crap in the butt. Plus I have to turn 30! It's on my bucket list!

Comments

  • jtl
    jtl Member Posts: 456
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    Sounds like you will do fine
    Sounds like you will do fine and the fact that you are eating by mouth has got to be a big plus. Welcome to the forum but sorry you have to be here.
    Regards,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome Amanda....
    You sound like you are pretty well informed already....

    Here's a link to the SuperThread, I'm sure you probably already know of it;

    SuperThread

    I was Dx, pretty much the same as you, only a few years apart and a couple of months..Jan09.

    So far all scans have come back clean, and I'm hoping to stay that way.

    My very best to you, and family,
    JG
  • Mikemetz
    Mikemetz Member Posts: 465 Member
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    Welcome
    Attitude and support count for a LOT in the fight against cancer, and it sounds like you are doing well in both departments. I had a slightly different diagnosis, but essentially the same treatments and a feeding tube, too. You are way ahead of where I was so soon after radiation--so good for you!

    Keep up the good progress!
  • Marty36
    Marty36 Member Posts: 84
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    Sounds like you are doing great
    I do have a question, and maybe others can answer. I didn't have a feeding tube, so I've always been curious about this. You seem to be eating a lot (and salads/pizza were something I never really tried and I ate through my whole rads/chemo). Why do doctors have you continuing to use the feeding tube given your ability to eat pretty good?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Marty36 said:

    Sounds like you are doing great
    I do have a question, and maybe others can answer. I didn't have a feeding tube, so I've always been curious about this. You seem to be eating a lot (and salads/pizza were something I never really tried and I ate through my whole rads/chemo). Why do doctors have you continuing to use the feeding tube given your ability to eat pretty good?

    I Think...Therefore I Am...
    LOL, sorry, old phrase....

    I think you pretty much answered your own question without realizing it...

    I'm pretty sure they have the feeding tube in to make sure she has the ability to take in calories... She is fortunate enough that she can make do pretty much without using the tube... If she can take in enough, I'd presume it's better for her to use her throat and swallowing abilities.

    But for those times she can't she always has her tube for backup.

    I'm like you, I never had one prescribed to me and it wasn't a problem in my case.

    Best,
    John
  • Marty36
    Marty36 Member Posts: 84
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    Skiffin16 said:

    I Think...Therefore I Am...
    LOL, sorry, old phrase....

    I think you pretty much answered your own question without realizing it...

    I'm pretty sure they have the feeding tube in to make sure she has the ability to take in calories... She is fortunate enough that she can make do pretty much without using the tube... If she can take in enough, I'd presume it's better for her to use her throat and swallowing abilities.

    But for those times she can't she always has her tube for backup.

    I'm like you, I never had one prescribed to me and it wasn't a problem in my case.

    Best,
    John

    ROFL
    You are right. After I pushed the button, it all made sense. I think of it as an either/or instead of both. I can see that its very useful as your transition from not eating to eating.

    I was lucky to eat the entire time. It didn't always make sense what I could eat and what was awful (cooked pasta with olive oil and parmesan cheeses was much better than pasta with a sauce) but I just kept experimenting. I hated eggs until I got sick, now I love them. Quiche became my best friend.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Hi Amanda,
    Nice to hear from you. Sounds like you're right on track to hit 90, rather than just 30.

    I surprised myself with how quickly I figured out how to eat fries after I finished treatment (HPV+ Base of Tongue - stage 4). Keep up the good work, and let the healing continue!

    Deb
  • IAmStrong
    IAmStrong Member Posts: 58
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    D Lewis said:

    Hi Amanda,
    Nice to hear from you. Sounds like you're right on track to hit 90, rather than just 30.

    I surprised myself with how quickly I figured out how to eat fries after I finished treatment (HPV+ Base of Tongue - stage 4). Keep up the good work, and let the healing continue!

    Deb

    Wow!
    I am majorly Impressed that you can eat! Sounds like you will do just fine. God Speed!

    God Speed!
  • amanicothomp
    amanicothomp Member Posts: 4
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    Marty36 said:

    Sounds like you are doing great
    I do have a question, and maybe others can answer. I didn't have a feeding tube, so I've always been curious about this. You seem to be eating a lot (and salads/pizza were something I never really tried and I ate through my whole rads/chemo). Why do doctors have you continuing to use the feeding tube given your ability to eat pretty good?

    Not able to eat enough
    Hi Marty!

    I am only able to eat a little at a time which is why I still have my feeding tube. I have been pushing myself a little at a time. Unfortunately, eating real food still seems overwhelming to me. Also I still have ulcerations in my throat and it makes it hard to eat a lot. I ate about 2/3 of a small slice of pizza and a handful of salad. That only replaced one can. Eating is still hard for me, I just keep hoping that if I push myself it will become easier. Tonight I tried baby food and it burned my mouth, lol. Once you get used to not eating it's amazing how hard it seems when you try again.

    -Amanda
  • amanicothomp
    amanicothomp Member Posts: 4
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    Thank you!
    Thank you to everyone who responded to me! I appreciate the support. I am determined to not let this cancer define who I am!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Not able to eat enough
    Hi Marty!

    I am only able to eat a little at a time which is why I still have my feeding tube. I have been pushing myself a little at a time. Unfortunately, eating real food still seems overwhelming to me. Also I still have ulcerations in my throat and it makes it hard to eat a lot. I ate about 2/3 of a small slice of pizza and a handful of salad. That only replaced one can. Eating is still hard for me, I just keep hoping that if I push myself it will become easier. Tonight I tried baby food and it burned my mouth, lol. Once you get used to not eating it's amazing how hard it seems when you try again.

    -Amanda

    Ensure or Similar...
    I wouldn't really force the eating real food issue (at least me)... Ensure was much easier and offered the most bang for the buck as for calories in my case.

    Having the feeding tube in place does allow more options for you though.

    But either way you do it, getting in the calories and fluids are essential to healing and recoveery.

    Best,
    John
  • hawk711
    hawk711 Member Posts: 566
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    Thank you!
    Thank you to everyone who responded to me! I appreciate the support. I am determined to not let this cancer define who I am!

    Amanda
    You have a wonderful attitude, keep it up!! Wanted to let you know that the phlem and mucous will end shortly. Mine did about 6 weeks after treatment, so keep that in mind.
    Also, I had a feeding tube for 13 months and only used it when I needed to at the end, but it allowed me to go back to work early and still get plenty of nourishment. I know you hate it, but it can give you great flexibibity if you look at it that way...I traveled and took cans with me instead of trying to eat at restarants. You are a young woman, pretty too by the way, and I think age is in your favor. I am twice your age and I am now 22 months post treatment and eating anything I want now. Some foods need more liquid, but they all taste good now.....Stay focused and you'll be fine.
    All the best,
    Steve