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.

Welcome Barb....glad you found us, sorry you needed to. I will send you a private email message. God Bless, Carol

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

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

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.

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

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.

Blessings,
Barbara~

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

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~

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?

Ah yes, I'm still on it. Iressa was dropped for the study of lung cancer patients, but according to my doctors they are still studying it for head and neck cancers.

When it was presented to me to be part of the study, Iressa was described to be sort of a backup plan and as a drug that would prevent cancer cells from replicating and spreading. This was at the beginning of my treatment, so they gave me the drug all through radiation and chemotherapy.

I've had the luck of experiencing most of the awful side effects. Towards the end of radiation, I had nasty running blisters to the point that I needed special dressing on the back of my neck, and it probably explains why most of my hair fell out on the back side where the blisters were. The nurses kept asking me if I had "shingles"

They finally took me off Iressa for a couple of months to heal up and after the neck dissection they put me on the stuff again. I think I probably actually cried when they handed me the bottle. This time my face broke out so bad that I ended up looking like a crack whore and hated going out in public. I also had some nasty bouts with diarreaha that shook me to my core.

Anyway, I'm still on the drug and still in the study. My neck appointment is on July 1, and I am going to ask them how long they intend to keep me on this drug.

The only positive thing I can say at this point is that so far I am "cancer free" but I am not sure that I can say it is from the benefits of Iressa. Perhaps it is, but I just can't feel that confident in something that has made me so miserable. Then again, everytime I've had one of the extreme side effects from the drug, the doctors get excited because that means it's "working" or perhaps in the study the people with the worse side effects are the ones that benefit the most. It is probably why, no matter how bad I react to it, they don't want to take me off.

Jen

Barb, I've had probably the worse seven months of my life, but I am starting to feel "normal" again. Granted I don't have the stamina I use to have because I have been through QUITE an ordeal, but I am able to get on with my life pretty good. I just really wish they would pull the PEG tube out. I'm not using it and am finally eating pretty normally, but they won't pull it until I gain more weight back. Part of the problem with the weight gain is the Iressa. My body seems to want to dump calories almost as soon as they go in.

Of course, I do live in fear of cancer coming back to bite me in the ass, but really, I'm concentrating more on getting my life back.

Jen

My body seems to want to hold on to every calorie I put in it. I don't feel like I have any edema but I gain a bit everyday. Maybe its inactivity or nerves just making me hang on to them. I see my Onco every Monday so maybe I will ask him and see what he thinks.
I am glad you are on the road to recovery Jen. Try not to worry. Am I "the worry wart of the state" really saying that?

Bless you dear and all of you,
Barbara~