RE: Cancer of the Tonsils

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RE: Cancer of the Tonsils

by Cavman on Sun Sep 22, 2013 12:28 AM

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I am a stage 4 SCC right tonsil cancer survivor. It has spread to my nodes. Since treatment ended on Xmas Eve 2005 I have had teeth issues. Yesterday I had all my top arch teeth removed and implants put in. I know many would like to get them, but are worried. I will let you know how it goes. Any questions, please ask. I`m here to help. I was told it will be a 4 to 5 month wait to make sure implants fuse with the bone. 

RE: Cancer of the Tonsils

by Cavman on Sun Sep 22, 2013 12:28 AM

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Meant to say it has spread. I hope it isn`t back. Sorry.

KellyDavis KellyDavis
(Inactive)

RE: Cancer of the Tonsils

by KellyDavis on Thu Sep 26, 2013 07:21 AM

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Same here Cav. I'm about 8 months out and my teeth are just falling apart. I actually called my oral surgeon today and got an appt for Oct 2nd to get the ball rolling on removing my teeth.

I handled the loss of taste, the surgical scars, the numbness, the slurry speech from my tongue being not-so-nimble, the massive weight loss (115 lbs for me), and the dry mouth. Losing my teeth though is mentally in a whole other league. It's really upsetting me quite a lot :/  I'm just 44, kids in high school so it really sucks to have to do this. Not much choice though. My teeth literally break parts off all the time as I eat. I'm tired of the pain involved.

I hope it goes well for you my friend. I'll be praying it does and that the pain is as little as possible.

RE: Cancer of the Tonsils

by caroline4 on Thu Sep 26, 2013 07:34 AM

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omg - not more to look forward to?!

I am hoping doing the flouride gel with teeth guards once a day will prevent this from happening?  Did either of you do this?

I have had 2 ops and need another in my throat.  Initially it was my right tonsil and some nodes.  Then a cyst, still got all 12 stitches in, oh boy it grew fast - frightening!  Now, I am not sure, but they saw a shadow and they are going to tell me in a weeks time whether it is an op and chemo or just chemo - deep joy!

Anyway, good luck and please tell me if either of you used the flouride gel once a day, and your teeth still went bad?  I need to know, so I can prepare myself for it - hope you understand!

 

KellyDavis KellyDavis
(Inactive)

RE: Cancer of the Tonsils

by KellyDavis on Thu Sep 26, 2013 02:07 PM

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Yes, I did. I know that's not what you want to hear but I have a feeling you'd rather get honesty. The part I was shocked at was how fast the decay happened. It started just a few months after initial treatments, but weigh that against the fact that I had a full round of things done (chemo X6, rads X30, neck dissection).

The radiation tends to dry your mouth out and that's the part that works you over. Even brushing, etc I still would find bits of food in my mouth the next morning that had sat all night in some hidden crevice because there wasn't saliva to wash it all out. The sad truth is you literally must brush thoroughly after EVERY time you eat or you will end up with decay. Twice or even three brushings a day isn't the answer because you must follow up to keep the food out if your mouth is dry like mine.

I've just tried to accept it as the price of admission to the cancer ferris wheel of fun. Not many get to say "stage 4" and "Recovered" in the same sentence so I count myself incredibly lucky. Vanity is what causes my trouble here. I don't want to look so damn old at so young an age.

RE: Cancer of the Tonsils

by Cavman on Thu Sep 26, 2013 02:17 PM

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Kelly,

I am almost 8 years out. What a tough life changing experience, huh? The year after treatment is tougher than the treatment. I want all to feel free to contact me anytime. I feel I can help because I have been where many of you are and or going being 8 years out.

The taste will come back a lot or maybe I just learned to think it did. It was one of the toughest issues for me, but it will be better. I swear to you. But it will take a few years, gradually being better each year. If you have questions on what I learned by spending a lot of money in trial and error on different foods, please ask. I will say sweets were huge.

I have spent 5 years with teeth breaking off at the gum line and dealing with massive pain and bi-weekly trips to a dentist chair at the VA. The VA helped destroy my teeth and left me in a mess when they threw their hands up, not knowing what to do. They wouldn`t do implants because they positively stated I would get infection and be a mess. I read and read about implants for people like us and did find some credible positives from professionals. I decided the hell with it, I am trying it. If you decide to do it, go to a credible university dental school and start the process.

The normal process is extractions the first visit. Bone grafting if needed the second visit. Implants put in the third period. After strongly insisting, I got the surgeon to perform all 3 processes in one visit last Friday. Took 4 hours. They will make you a temporary plate to wear after the swelling goes down. I am now in the waiting on swelling to go down until Oct. 17 when I go back to see if I can wear plate then. Remember my case was extreme because of many broken teeth needing to be dug out. They did put me under for surgery. Anyway, after about 4 months if screws fuze properly with the bone, the process of making a bar to put into implants and teeth to snap in will begin.

Sounds inevitable you will need it done, so don`t wait. That surgery and temporary plate cost me $7000. Some universities may give you payment plans. Mine didn`t.

RE: Cancer of the Tonsils

by Cavman on Thu Sep 26, 2013 02:20 PM

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I didn`t use the trays. I should have. I`ve heard they help.

I honestly think even though you are in progress with a doctor, that you should get a second opinion. You don`t have to let your current doctor know. I recommend going to a university hospital if you are near one. Seriously.

I was a stage 4 in tonsil and nodes and your description sounds kind of wrong to me. I didn`t have the neck surgery.

RE: Cancer of the Tonsils

by caroline4 on Thu Sep 26, 2013 04:32 PM

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On Sep 26, 2013 2:07 PM KellyDavis wrote:

Yes, I did. I know that's not what you want to hear but I have a feeling you'd rather get honesty. The part I was shocked at was how fast the decay happened. It started just a few months after initial treatments, but weigh that against the fact that I had a full round of things done (chemo X6, rads X30, neck dissection).

The radiation tends to dry your mouth out and that's the part that works you over. Even brushing, etc I still would find bits of food in my mouth the next morning that had sat all night in some hidden crevice because there wasn't saliva to wash it all out. The sad truth is you literally must brush thoroughly after EVERY time you eat or you will end up with decay. Twice or even three brushings a day isn't the answer because you must follow up to keep the food out if your mouth is dry like mine.

I've just tried to accept it as the price of admission to the cancer ferris wheel of fun. Not many get to say "stage 4" and "Recovered" in the same sentence so I count myself incredibly lucky. Vanity is what causes my trouble here. I don't want to look so damn old at so young an age.

Hi Kelly!

So, in effect we have almost had the same treatments so far, mine ended this July - good innit NOT! lol

I do not suffer from dry mouth, just the opposite from you.  I'm not sure which is worse from what I have read on here.  My saliva goes into overdrive when my heart rate rises, and then I am incapable of swallowing this thick mucus stuff, and can't talk for a while either - loverly NOT!

As for vanity, I'm with you on that one too :(  At the moment I have 12 stitches on side of my neck where they took out a cancerous cyst last Thursday - it was the size of a golfball within 2 weeks of just being an insect bite!  ok, only 12 - yeah, but like you, I had well over 60 brackets around my neck, so they shouldn't be bothering me, but they do - almost as much, if not more, because I thought I had battled and won.  I haven't :(

I also had a very complicated removal of my right tonsil which involved taking the archery from my left forearm and replacing the one by the tonsil which the cancer had grown around.  This invoved a leg skin graft to cover my forearm too!  So as you can imagine, with all that lot and a tummy thing I feel about 100!  I did say to my husband that I am determined to get to 50 without a grey hair - well, I'll just be pleased to get to 50! and I may well be right, because I have another lesion in my neck which they found last week, which means op and/or chemo full wammy!!  Hopefully it will be lucky third time round!

Thanks for being honest.  I'm going to try not to think about my teeth atm, 'cos I think that would just about finish me off if you see what I mean!  I have found some food the next morning even with so much saliva - I will be extra extra vigilant now I can tell you!

Bio-oil - loads and loads I have been told for your neck scar!  They do good deals over the internet!  I am bunging it everywhere lol

I wish you and everyone else, well and a big hug and a :)

luv 'n stuff

Andrea xxx

KellyDavis KellyDavis
(Inactive)

RE: Cancer of the Tonsils

by KellyDavis on Thu Sep 26, 2013 06:48 PM

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I'm always up for a chat with fellow travellers. This is my real name, I'm just a simple guy trying to make it through a tough ordeal.

Here's me before (all fat and happy): http://i1281.photobucket.com/albums/a517/agutgopostal/be8c28

My surgery: http://i1281.photobucket.com/albums/a517/agutgopostal/_SCN15

And me currently: http://i1281.photobucket.com/albums/a517/agutgopostal/137744

Anyone that wants to talk is welcome to PM me and I'll send you my cell. I live in an isolated community in Oregon and there aren't any other H&N cancer patients I know. My wife and I scour the internet for information to help in dealing with this so any advice is very welcome.

RE: Cancer of the Tonsils

by paisley7 on Fri Sep 27, 2013 10:40 PM

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Caro-I had tonsular, uvular & pharyngeal small cell w/ chemo & radiation. Within 6 months after treatment-end, I had 3 new cavities, albeit small ones. Filled. When I moved, my new dentist found 4 new ones & put me on the gel w/teeth rack treatment daily. I'm pleased to say it has done the trick, so far so good since 6/12/12, fingers crossed...& keep up w/ cleanings twice/yr. Good luck to you all.

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