What to do????

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CaKat
CaKat Member Posts: 28
in Head and Neck Cancer #1
I am new...learned lots already reading...

My first H&N surgery was 1997. Now I've had 25+ surgeries. Had radiation (only) in 2010.
The cancer came roaring back. Had what I call extreme surgery in Oct. was in the hops 12 days. Now feeding tube and trach. Had more surgery to take bone from the roof of my mouth in early Dec. (successful for a change). I have a mouthpiece the separates my mouth and sinus cavity...makes my choke and cough...still being constructed.
Tumor back middle of base of tongue. (till now cancer has been all on the left side.)
I've been given 2 choices...chemo (for the first time)i.e Carboplatin,Cetuximab,Fluorouracil
or surgery to remove the rest of my tongue and voicebox. YIPE Input? Ideas?

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  • jtl
    jtl Member Posts: 456
    #2
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    CaKat
    For me that would be an easy choice and remember this is not a medical opinion just me. I would try the Eurbitux (Cetuximab) and see if it shrinks the tumor before more surgery. Is is pretty mild in terms of side effects. It is newer than the Cisplatin drugs so it does not have the long history but it targets the squamous cells, technically it is a antibody and not a chemo drug. I'm sure you will get more opinions.
    Best of Luck
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
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    I have an article for you
    It is from a proprietary website and i can't copy and paste it, nor can you open it. But if you'll PMt me an email address, I can email it to you directly, I think. I'm sorry to hear of your problems. I have pretty strong opinions on your situation, but I'd like to share the latest stuff on combination chemo plus erbutux first.

    My best wishes to you.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    Chemo
    I had the Cisplatin, Taxotere and 5FU for my initial treatment, in addition to concurrent carboplatin and rads....it's tough but doable.

    Best of luck on your treatment and decisions....hoping for only the best of results,


    Welcome to the forum,
    John
  • Pam M
    Pam M Member Posts: 2,196
    #5
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    Welcome
    Just wanting to say "Hello". No idea what to suggest for you. My primary tumor was on the right side of base of tongue - per docs, surgery on the base of tongue was not an option up front for me. I was very down, because from what I'd read online (grain of salt time - I'm not an experienced medical researcher, so could very well have been off base in my thinking), surgery up front followed by chemo rads was my best shot at survival, since I'd been staged at stage four. We went with chemo, chemo and radiation - the treatment wiped out my primary, so I didn't have to have the "mop up" surgery on my tongue.

    Where was your '97 tumor? Over 25 surgeries is a LOT. Was there a reason docs did not want chemo for you in 2010, when you had radiation? Do docs expect chemo alone to wipe out your current tumor? Are they saying your odds of success are just as good with chemo alone or with surgery alone? No chemo/surgery combo? No additional radiation possible?

    Now I'm just prattling - sorry. Hope you do well - I know how hard the decision process can be.
  • jtl
    jtl Member Posts: 456
    #6
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    longtermsurvivor said:

    I have an article for you
    It is from a proprietary website and i can't copy and paste it, nor can you open it. But if you'll PMt me an email address, I can email it to you directly, I think. I'm sorry to hear of your problems. I have pretty strong opinions on your situation, but I'd like to share the latest stuff on combination chemo plus erbutux first.

    My best wishes to you.

    Pat

    Article
    Pat,
    Thanks for the link to the article. Now I remember it from a previous post, most likely yours. The results are definately a plus for combo therapy.
    John
  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
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    My choice
    would be the treatment first. You can always do the surgery if that fails. It is kind of like dental problems, retain teeth while you can then remove as last result.

    Just my opinion.

    Debbie
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #8
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    jim and i said:

    My choice
    would be the treatment first. You can always do the surgery if that fails. It is kind of like dental problems, retain teeth while you can then remove as last result.

    Just my opinion.

    Debbie

    Not so fast
    In my case, I was advised that I could have the surgery first or not have it at all. I would definitely clear that up with doc. I was advised that going through rads and chemo first would weaken the tissue (or muscle or whatever) to the extent that the kind of surgery they wanted to do would be much more difficult if not impossible. Do check with doc on that.

    As for the original question, it is true that we must all choose our own path, but I chose to be aggressive, have the surgery, and then the rads and chemo. I am six years out from diagnosis and all clear. That, of course, will not be the same result for everyone, and there are a few things I regret about the choice, but still, I opt for aggressive care and so far have done well with this approach.

    Take care,

    Joe

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