HI, MY NAME IS VICKI, THO EVERYONE HAS ALWAYS CALLED ME MISS VICKI,,SOUTHERN IN ME, I GUESS,,ANYWAY, I AM 47 YEARS YOUNG,, THIS IS MY 3RD TIME WITH MOUTH CANCER,,SO YES I AM A SURVIVOR,,BUT STILL FIGHTING..I GOT MOUTH CANCER THE FIRST TIME IN 1989 AT THE AGE OF 32,,THEN IT CAME BACK 10 YEARS TO THE DAY,,THEN AGAIN IN 2003,,I JUST HAD RADICAL THROAT AND NECK WITH COMPLETE JAW REPLACEMENT,,MY QUESTION IS THIS,,I HAVE HAD RADIATION 2 TIMES,,,ONCE WITH THE MASK AND EXTERNEL,,I GUESS YOU CALL IT,,THEN RADIATON IMPLANTS,,,THE AREA, MY JAW, CHEEKS, THROAT, IS TAKING FOREVER TO GO DOWN IN SWELLING...I HAVE A FEEDING TUBE AND A TRECH...THE TRECH WILL COME OUT AS SOON AS THE SWELLING GOES DOWN WHICH ISNT HAPPENING VERY QUICKLY,,DOC SAYS IT COULD TAKE UP TO YEARS FOR THIS TO OCCUR. WHICH WAS NOT WHAT I WAS TOLD BEFORE THIS HORRIBLE PAINFUL 14 HOUR SURGERY...ANYONE HAD THIS REACTION THAT CAN GIVE ME SOME INSIGHT AS TO WHAT TO REALLY EXPECT..THANK YOU SO MUCH,,,MISS VICKI

Hi Miss Vicki,

Welcome from one southern gal to another. I'm sorry to hear about your recurrances. I don't have answers to your questions. Someone on this board might and I'm sure will answer.

I just wanted to greet you and although we hate to see new people with this cancer "let you know you are welcome".

As I was reading your posts it dawned on me that it was harder than normal to read due to the use of all caps. (besides it is screaming in on line language - although there again, we'd all like to scream sometimes)

If you think about it next time you post, please try not to use all caps.

Take care and again glad you found us. And hopefully someone that has had your surgery will be along to help.
Dinah

I am so sorry my button was broke so I went this morning and bought a new keyboard,,,hope this helps...sorry

Hi Welcome
Glad you could join us.. sorry I can't answer your questions but I'm sure someone here will have the answer.. Take Care
Helen

Hi Miss Vicki,

Welcome to the forum -- I'm sorry to hear about your multiple battles, but hope this time is a success.

When I had radiation, it included both external beam and implants, and it took many months -- probably more than a year -- for the swelling to go away entirely. However, it was gradually going down during that period so after a few months it was less of a hindrance from the standpoint of eating. (I was recently looking through some old family pictures to try to track what happened with the swelling over time, but I can't seem to find any -- I guess because I was trying not to be in any pictures around that time.)

I didn't have a feeding tube at any point, so I can't comment on how long you might need to have that in place. There are a number of people on this board who have had tubes for extended periods after radiation and may have thoughts on that.

Just curious -- have you had all three incidents of cancer handled by the same team/medical center, or different ones?

Cathy

Miss Vicki,

I think I still have some residual swelling after 4 months. I'm not sure things will ever be the same in my throat after the "microwave" treatment. Are you able to plug your trach for anytime at all? They told me as soon as I was able to leave the trach plugged they would remove it. I'm a bit confused is the swelling from surgery or radiation?

I'm still on a feeding tube as well. I eat some, but not enough to maintain my weight.

I didn't have any jaw surgery, but have seen some results and the swelling is tremendous. I'm not sure how long to expect that swelling to go down.

God bless you! Welcome to this site. I'm here to help if I can.

Lynn

Wow!! Am I overwelmed, thank you so much for making me feel so welcomed..and for all the replies..I have just now been able to cap off the trache, for the second time, we will see, my next appt is in Cal, I live in Vegas but all this work was done at UCI-Irving..What a GREAT place that is, I love my new team of doctors,,Lord I have a ton of them it seems..The fedding tube who knows for I do not ever see me eating again not with this little bity piece of a tongue that I have left,,but you never know. I have so much to heal..My upper and lower leg, my neck, my mouth, my ears,,My oh my..I dread having to have the feeding tube changed out,,they say it has to be changed every 3 to 4 months,,since I am a very high risk person to be put out..and they may have to put me out..if the "C" doesn't pop up somewhere else, I pray to all the Heaven's that it does not,I can live another 5 plus years,,,that is what I am aiming for,,without this surgery..I was given 3 months and best...I took th e surgery, 3 months was not an option for me...wish me all the success in this..Always, Miss Vicki

Hey Miss Vicki...you need to make plans to meet all these guys in Vegas...they will drag you through the bad times.
My husband had his feeding tube,the same one, in place for a year before it was removed.
Keep your lovely new chin up.
Cheers
Marica

Hey Miss Vicki,
My husband had his PEG tube put in at the beginning of treatment in mid January. He still uses it...hoping to get rid of it soon. He can eat very little by mouth, though, just some soup and pudding. It's a long, hard process but he hasn't had any trouble at all with the PEG. Enjoy the board...I feel like my day is not complete if I have not had time to visit at least a little! May God bless you and comfort you during these very difficult times. God and a great support group of several people is what gets us thru!!
Take care,
Debbie

I feel the same way about this board. My day wouldn't be complete without logging on and checking in on everybody. I usually check out the new members too. It's sad though to see how prolific this disease has been lately.

Talk to you soon
Lynn

Hi Viki,
My name is Minnie and I had similar surgery to yours. April 16th of 2003 I had the lower left side of my jaw removed and they used the bone from my lower left leg to make me a new jawbone. I also had a left neck dissection with 6 weeks of radiation. A year later I still have a small amount of swelling under my jaw, surgery side, and a bit left on the incision for my neck dissection. I had the trach for a few days but it was out long before I left the hospital. I also had a feeding tube placed when I had my surgery and had it until December 2003.
My jaw operates quite well and I am eating most anything I want just slower. Some of my saliva was saved do I am lucky for that.
Please ask me any other questions you may have about this surgery.
Take care,
Minnie

Minniea are you sure??? Because I have a ton of questions to ask? How much of your tongue did they remove if any?? That is the thing that is bothering the most. I only have a nickel size piece left. I do know that all my swelling is from the radiation I had prior to my surgery, just 4 months before, I had the implants and the hypothermia. This is why my throat is so swollen and the trache is still in tho I have hoping it will be removed my next visit.. Oh I am so jazzed for you,,I really am,,,how did you leg heal up? The bottome where the bone was taken is doing fine, looks awful,, but it is fine. The top of my leg where the skin graft was is taking forever to heal..Did you have this as well. Did they make u a flap.I cannot wait to hear back from you,,Oh thank you so so much for writing,,i want my honey to read this,, of course he says i will be back to my normal self, he always, always sees that glass half full, for this is the reason i am so crzy about this man...Always Vicki

Hi Vicki,
I did not have anything done to my tongue, the only place I had any cancer was under my tooth in my jaw bone. I went to have a regular cleaning and the dentist found my tooth to be really loose. He extracted it and that is how we found the cancer. My leg where they took the bone healed beautifully. It's sunken in a bit but if not for that it would be tough to know that anything had been done, as the incision (which runs the length of my lower leg) is almost invisible now. I did have trouble with my foot and two decubitus ulcers that formed while in the hospital, the cast was put on to tight and one formed on the top of my foot and one on the heel. I didn't have any type of skin graft.
The think I hated the most was the trach, I fought hard to get that thing taken out!! But, I had my radiation after surgery so didn't have as much swelling.
Did you have your entire jaw replaced? My new jaw on the left side works quite well, my speech is the same as before. I did lose feeling in my lower left lip due to a nerve being removed and lost some feeling on my neck and chin, but I'm so used to it now that I don't remember what it was like before! I can open my mouth as wide now as I did before the surgery and radiation and while I eat slower, I eat well! There are some things I just don't bother with any longer, such as chips, but I can LIVE with that. I went to Ruby Tuesdays last night with my husband and two youngest daughters and had the ribeye with french onion soup and it was delicious. I get my steaks with cheese melted on top of them, seems to help and tastes delicious.
Some advice for you. Keep opening your mouth as wide as you can, many times a day. Keep your neck mobile, keep moving it around and stretching it as much as possible.
I feel what your heart feels when you talk about your daughter. I have 7 of them, ages 23,21, 20, 18, 13, 11, and 10 and my heart literally hurts when I see the sadness in their eyes. This has affected them so much more then it has me. But, after one year life is pretty much back to normal for us but with a closeness we would not have had without this experience.
You can get through this, it's tough but it can be done. The radiation was MUCH tougher on me then the surgery. I didn't have the tongue issues you have so hopefully someone else can help you with that.
Did you get a live implant for the entire jaw bone? There is another member on here, Gnelson, that also had her jaw replaced, I believe back in 2000. She is doing just great now. Hopefully she will also respond to your posts.
Take care and let me know if I can help in any way.
Minnie

Minnie,I thank you so very much for all your input and advice..This is my third bout with Cancer. I have had all the radiation that I can ever have, the lifetime dose. Surgery was my last hope. Was you leg sunk in, because mine is, I just cannot believe that it will heal to where it will not be noticable, If I could I would e mail you a picture of my leg to see if you could tell if it looked like yours. The tongue is going to be a major problem,,hum, I guess I will know when I get to that point of all this. But I do thank you so very very much, you have given me some much to look forward to. This trache is not coming out until I can get the musous up my throat and out, kind of hard to do when I can barely open my mouth and my throat is so swollen, not as bad as it was tho..I needed to hear from you this morning,,,Thank you ,,you are my angel . Always, Vicki Lynn

Vicki,
My leg looked AWFUL for a few months after the surgery. I even had to go back to the ER the day after I came home because my leg became so swollen and just looked SO horrible. We were afraid it had an infection and we were right. Now, 13 months after the surgery, I can tell you that my leg is a bit sunk in but the incision is almost invisible, you have to be on top of my leg to see a very faint scar. My husband can't get over it.
Gotta go now, heading out to the bank and to return some clothes I bought at Old Navy............seems I've gained a few more pounds then I needed to!! I have never had to worry on my weight, I've always been real small and we worried about weight loss with the surgery and radiation. I lost under 20 pounds and have gained it all back..............and some of it went to different places then I remembered it being, lol. So, back to Old Navy we go to go "up" a size. No complaints from me!
Take care,
Minnie

Thanks Minnie, appreciate the come back,,,that is me, this time I have even gained some more extra weight...But this is okay, I am not complaining one bit. I needed to gain some, I am like you not very big in weight and height. Have fun , Always Vicki

Miss Vicki,

I wanted to take a moment and give you real loud HOWDY and welcome even though by the posts it seems you have already made yourself welcome. I am so glad you have found answers to those nagging questoins you have had. That's the real gift of this place...finding an answer to just about any question you have. This is the greatest bunch of folks I have ever come across!

Ed

Dallas Texas, I am from Oklahoma, go home every chance I can get,, matter of fact our anual family reunion is in july, first time in a long time I will miss it. This sadens me for it is so much fun. It is a week long and Duncan Lake, in Duncan Oklahoma. We have been having it for 38 years now..I have a huge family, it takes a week just to see them all..lol. Why yes I have made myself very welcome here. I am finding a lot of my questions that have been keeping me up at night answered thanks to my new buddies on this site. My daughter even joined last night I see her name,Til next posting, Always Vicki