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newby w/ undifferentiated sarcoma of the tongue

garrettk88
Posts: 2
Joined: Jul 2012

Hello, as the subject says... I'm new here. I'm a 24 year old white male with sarcoma of the tongue. They're not sure what kind. I've gone thru chemotherapy (5 - three week cycles) and radiation (35 treatments) with less than spectacular results and now it's come time for surgery. I'll be posting about my recovery via blog.

http://funnyphonics.blogspot.com

I would enjoy hearing from other oral cancer patients and survivors, especially those with tongue cancer who've undergone a near total or total glossectomy.

Thanks,
Garrett

To the admins/moderators, I know this is a duplicate of my post in sarcoma, I wasn't sure who the proper audience was.

Sam999
Posts: 305
Joined: Mar 2012

Hi Garrett,

I am so sad you have to go thru this at such a young.

Unfortunately i cannot help you much but i have read posts where follks have done something similar, i am sure someone will give their input. This is wonderful community to come for info.

I had tongue surgery to remove the tumor and than 30 rad sessions.

I wish you a good recovery.

Sam

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Not a mod or admin, but post where you feel you'll get the most response....

I think you probably made a good decision posting in both areas.

I can't help you with your particulars as I was STGIII Tonsils.

But there are a few on here that have had similar to you if I recall. They should chime in before long.

Thoughts & Prayers,
John

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Sorry you had to join our club. By far this site is the best, for some more information you can also go to oral cancer foundation .org that would be www.oralcancerfoundation.org

John (Skiffin) also has a super-thread which is great info he posts now and then ...

I was base of tongue stage III with one lymph node. No surgery, radiationa and Erbitux chemo only. I am now 6 monnths out and have been given good scans the last two scans...

The surgery will be good...you are young and strong .....eat as much as you can to build your strenght before the surgery! Use a drink called Boost or Ensure ...I'm sure your team of docs as spoken to you about this already...

You did not say what stage you were at?

Best,

Tim

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Here is a link to that SuperThread;

SuperThread

Tons of excellent info for newbies and old timers alike.

It was originally compiled by Sweetblood22 - Dawn.

She hasn't been on here lately, but she's an awesome woman and good friend as well.

JG

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Although my cancer was in the larynx, I wanted to welcome you to the club that no one wants to be a member. In spite of the stiff dues, we are a pretty friendly club. Rick.

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I'm sorry you've found yourself joining our club, but it's great you found it. There are so many wonderful people here...lots of knowledge, and experience. I don't have tongue cancer, I have NPC...but I know someone will be speaking up soon.

p

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Hi Garrett,

Welcome to the forum, where people know me better than my family.

I had SCC removed from my lower tongue and neck, which is far less than you have asked about. Surely, someone will grace this thread with some pertinent info. Hang in there.

Best,

Matt

garrettk88
Posts: 2
Joined: Jul 2012

Thanks for the warm welcome and all the info you guys just gave me. I'm going to check out that "super thread".

I'm not sure what stage I am. I do know that even though it's a large tumor, it is mostly localized to my tongue. It also may be in my right lymph node, or nearby. The last scans show that a lot of the tumor was destroyed, I just have a lot of residual tumor left behind because of the size of this thing. At least, that's what I'm told. I'm very happy to be getting this horrible thing out of me. Even if it is via 12 hour surgery.

I'll slowly be posting on my blog after the surgery happens. I'm sure I'll be on here as well. Thank you very much guys.

Garrett

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Garrett:

Welcome....you have come to a good place. I read your blog; you have a very good attitude which will serve you well during your upcoming surgery and recovery.

I for one am living proof that you can survive the surgery. I lost 75% of my tongue and had a replacement made from my left forearm. Don't let the 12 hour surgery scare you--you sleep throught it all anyway--harder on those in the waiting room than on you. AND the good news is that recovery from the surgery was far easier than from the radiation treatments.

You will swallow again, you will talk again, you will eat solid foods again. It will take time, so you will learn to be patient and look at progress from week to week rather than day to day.

the biggest tip I can give you is to stay hydrated....water, water and then more water. I truly think that continually sipping water and crused ice is what saved my swallowing function.

If you would like to chat live before your surgery, send me a private message and I will give you my number. If you want to chat via facebook, send a friend request to INGRID KARDYNALSKI.

wishing you the best !!

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