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#17537 05-27-2005 05:49 AM
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Barb Offline OP
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Hello and salutations. I have finally found this forum again after noting it a few weeks ago and then losing it again.

I am a widow with three grown children and a teenage grandson. I am newly diagnosed with cancer of the vocal cords. I have had my surgery but my radiation is being delayed as I need another biopsy of the paranasal cavity on June 7th.

Its nice to be here. I look forward to meeting all of you.
Blessings from me to you. smile


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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Welcome Barb....glad you found us, sorry you needed to. I will send you a private email message. God Bless, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Hey Barb. I was dx'd on Jan. 3 this year with a tumor on my supraglottis after my neck nodes popped out. Guess I was and still am in a similar boat. I'm all done with radiation, chemo and two surgeries and now I have Iressa kicking my butt.

Let me know if I can be of any help

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Hi Barb
Welcome, now you have found us please stick around, we are here to support you, answer questions, and just to listen if you need to vent.I'm awaiting treatment to my vocal cards as they damaged one of them during my op, still sh## happens....
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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Hi Barb,

Welcome, wish we could have met somewhere else over more pleasant conditions, but we live with what we get. I was diagnosed with pre-cancerous leukoplakia on the vocal chords 9 months ago. I am scoped every 3 months by my ENT and so far one of the spots has reduced in size and the other remains the same. It's kinda like sitting on a keg of dynomite. but it's not cancer til they say it is. I'll be praying for a good result from your next biopsy and for God bless you and give you the strength you need to deal with your treatments. Prayer works wonders.

Hugs,
Margie

---------
Caretaker of Mother 1st stage tongue cancer last year with all lymphnodes removed on one side of neck. Scary leukoplakia diagnosis for myself.

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Hello Barb,

Welcome to the club nobody wants to join!!! Glad you found us though. You won't find a more informative website on oral cancer than here.

Did they stage your cancer? Also did they tell you what type of radiation you will receive?
The more knowledge you have the better. You can research some older postings using the search engine at the top of the page.
Write down ahead of time any questions you have for your doctors, we tend to forget some during the appointment. Better if you can take someone with you. Hoping your biospy comes back clean.
Your now part of one big international cyber family. It's a pretty tight group of people all going through roughly the same thing, oral cancer. Post any questions you have, someone with similer treatments will respond. Who better to ask than one who has traveled the path ahead of you?

All my Best, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
Joined: May 2005
Posts: 497
Barb Offline OP
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Thank you everyone. I have been joining one cancer support board after another but most are inactive or only partially so. Its ggod to be here. I feel blessed.

I have no idea about anything. I know my ENT removed all but 2% of the tumor. I know the Oncologist said I was very lucky to have it caught this early and that as far as he could see it had not spread.

My ENT and he say there is no possibility of it being in the paranasal cavity and that the pathologist most likely contaminated the sample from my throat but to be on the safe side I need another biopsy on the 7th. of June.

I know I get 33 treatments. He said I would get a sore throat but he for saw no other complications. Now how can he tell that ahead of time? If I knew for certain that were true I would have 1000 pounds of worry lifted off me as we type.

UGH. I hate this and I wish none of you were here either. frown

Blessings,
Barbara~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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Barb, tell you the truth I think I saw one of your recent postings over at another cancer message board I peruse. About the only place I post messages though is here, and that is only rarely since I've only been here since diagnosis and don't feel like a "survivor" yet enough to offer too much advice.

Like you, I wish I had been better informed about the side effects of all the treatments by my medical professionals, but seriously, I gained a whole lot of information about what to expect from the people on this forum that have gone through it before. I spent a whole lot of time reading all the back posts. Then again, every patient and phyisician have different treatment plans.

In my case, my tumor was made to disappear first with chemo and radiation and then four weeks later they did a neck dissection to see if there were any signs of live cancer cells remaining.

Radiation was much harder to endure than chemo, but endure it I did. Right now, I'm dealing with the rather nasty side effects of Iressa.

I know what you mean when you have explanations on side effects that sound rather mild and simplistic, but honestly I don't think they ever know how a body is going to respond to treatment until it goes through it.

Speaking only for myself, the "worry" burden is always there in the back of my mind. I thought recently this week when I saw some clip from the lame television show "Fear Factor" that at least those people smothering themselves with snakes, eating bugs and gross stuff willingly elected themselves for having to do scary stuff. It's a much different story when you are living your own "fear factor" and it's not voluntarily induced.

I really marvel that the age of the internet and search engines are here. It's how I found this place, and of course, any medication I get I research it.

In many ways, after I found this patient forum, I could fill in the blanks of what the medical team wasn't telling me of what possible experiences lay ahead. It was also largely comforting that people HAD gone thru it before and the treatments were not unheard of. I was also better able to deal with some of the more unsavory side effects before they appeared because I understood it was a possibility for them to happen. Most days were consumed by simply not trying to "freak out" completely.

Heck, I'll still admit that even now that treatment is behind me I still have days where trying to NOT "freak out" is my goal.

Jen

Joined: May 2005
Posts: 497
Barb Offline OP
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Posts: 497
Thanks Jen. I wonder if I will ever feel normal again? Maybe so and maybe not. I do so much research too and sometimes I get to much information and thats when I get in a fix. This is a beautiful place. Love lives here and thats why I am here.

Each day that we live we are survivors Jen. At any given time we could reach the end of the road. Its not that part that scares me its the side effects of the treatments. I have so many allergies to medications. I dread it.

Hugs and blessings,
Barbara~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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Barb.

I am so sorry to hear about your dx.

What I have learned here, in just a few days, is that this board is a safe harbor for your pain, frustration and fear...which slowly convert to hope, inspiration and strength.

After only a few days I can feel the change.

Also, Brainstorker: I thought I read that Iressa was being dropped for some reason. Are you still on it?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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