I would like to introduce myself...my name is Kristie & excited I found a site where I can talk to people regarding my cancer experiences to someone who genuinly understands. I am from the USA and all you guys are over there. Bummer. So, how does this site work?

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi there.
Find the introduce yourself board,and do just that.Tell us about yourself,your cancer experience,then fire away with any questions.

liz

Hi Kristie
Welcome aboard!
We're not all from over there, some of us are from down here!
Hope you find the forum meets your needs. We're a friendly bunch.
Cheers from Down Under
Deborah

Hi

I was diagnosed in January '05 with Stage II SCC N0M0. The left side of my tongue from tip to first molar was excised on 2/4/05 and replaced with a flap from my right arm (I joke that my doctor slipped me a little tongue). I was phenomenally lucky that I didn't need radiation or chemo (not that the surgery was exactly my idea of a good time), and I didn't need to learn how to talk again. I had a NG tube for a while after surgery and wore a trach for about a month.

As far as eating is concerned, soft and wet seems to be the way to go, with gravy becoming its own food group. I was single-handedly responsible for a rise in Boost sales--sorry about that one--in the Ann Arbor/Ypsilanti area before I had my surgery. I also added Centrum liquid vitamins to things like hot cereal. The other suggestion would be drink lots of water.

Have you discussed any of these problems with your doctors, or found a support group in your area? I belonged to one for a while, but it was mainly for throat cancer survivors, and they have a lot more problems than I do.

Talk to you later.

Julia (and Flappy the Tongueflap) :P

Hi Kristie

Welcome to the site. I have been a member since the end of last year and have found it very helpful. Like you suggest it is good to talk with people who have been through the same (or similar) things and understand what it is like. There are always people around to answer questions, make suggestions, offer support, cheer us up with jokes etc.

Look forward to getting to know you.

Gwyn

Moved Reply:

Hi,
My husband was diagnosed with stage IV base of tongue cancer in Nov. (after being misdiagnosed for over a year) He started treatment in December and is currently half way through his therapy. He underwent 2 doses of 5FU, Cisplatin and Taxotere, then began radiation. He gets radiation every day for 7 weeks and Taxol, Carboplatin and Erbitux every Wednesday. I have found lots of useful info on this forum and am very glad to hear how well you all are doing. My husband is dealing with terrible mouth sores, and an ugly rash due to the Erbitux. He is taking Duragesic patches for pain, has a stomach tube for food and Lidocaine mouth wash to numb his mouth. It is good to see that when this is all over, he can get his life back. I worry about recurrence and permanent damage due to radiation. I guess I will always worry about that, that is what you get when someone you love has cancer.
Thank you,
Laurie

Moved Reply:

Hi Laurie
Welcome aboard. Why don't you post in the 'Introduce Yourself' section so that your post won't get lost and everyone will know that there is a newbie on the board.
You hang in there. It's a tough road we ride as carers and heartbreaking to (feel as though we) stand by helplessly while our loved ones suffer so much. You will soon be through the worst of it and won't believe how quickly the treatment has passed because while you're going through it it seems never ending.
Life will be different even at the other end of the tunnel but as you will read and hear from other members, life does go on and generally for a long time. You will just have an altered reality.
I look forward to reading your future posts and know that you will find the friendship love and support on this forum immeasurable.
Cheers from Down Under
Deborah

Hi Krystal, Well get typing and tell us your story.
Everyonr haas different experiences and it helps us all to know were not alone with the Cancer and its aftereffects.
There is many people on here from the Us.

have a good day hehe
Paul

Hi Kristie, welcome to the forum. You'll find plenty of answers and support here. Hagg.

hi krystal and hi laurie
welcome to the site.we are all in the same boat here,some better than others but we are all here for each other to support and offer advice to everyone.if you have any questions don't hesitate to ask for help as you can be sure that someone has been down that road.you are not on your own we are all here for you.love shirl xxx

Hi Laurie

I too had stage iv tougne cancer 5 years ago. Still here although last october it returned in my lung. However this was removed and I live to fight another day. During the latter period of my treatment I was tube fed through my nose and afterwards had to learn to eat and speak again. As for perm damage due to radiotherapy, I have no siliva and due to scar tissue at base of tongue find it difficult to eat without plenty of fluid. As for recurrence if this happens as you can see from me they can remove and treat. They do take real care in follow ups to hopefully catch it at it's onset.

Regards and take care

Hi all,

My husband just had a set back this week, he was found unresponsive on Tuesday morning (he spent the night with his parents). He was rushed to the hospital, apparently he fell deep asleep and vomited in his sleep and then aspirated it causing respiratory distress. He was on a ventilator for a couple of days, but he has pulled through. I have him home now, and he has managed to keep all his tube feedings down so far, so that is good. He is on a break from radiation and chemo until Monday. We have 22 more days of treatment left. Maurice, I am so glad to know that the recurrence was treated and you are good now. Doug had a lesion in his lung before treatment started, but it went away after 2 cycles of Cisplatin/5FU/Taxotere. How often do you go for follow up care? Deborah, thank you for your kind words!
Laurie

Hi Laurie
Glad you're back. I was afraid you might have gotten lost as your post seemed to still come into the wrong place!
What an awful fright for you. I have been in that position with Trevor years ago. He was found cyanosed and unresponsive when in hospital for renal colic. The dr thought he must've had a stroke, the recovery team was called to transfer him after a lot of work to bring him back. Turns out it was morphine! Very scary.
You're well into the r/t now. Be sure to keep the treatment area well moisturised between shots. Don't forget the back of the earlobes if they're in the r/t field!
Cheers
Deborah