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#22851 04-21-2007 11:44 AM
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I thought I could come on here and vent - till I read some of the posts here - and I thought I had it bad - -
12/1996 was diag with this and started the chemo and radiation treatments - 6 weeks.
I have had 5 doctors tell me that I was over treated - 7000 rads
Collateral damage: soft palat does not work, throat not up to par, Hypothyroid - daily meds, salavary glands burned out along with the jaw muscles. It was 2 years b4 some true feeling came back to my hands and feet. I have to be careful when doing anything because I only notice cuts when I see blood. I now have only one tooth left - figure it will be gone within a month. My hearing is to the point that hearing aids are not cutting it. my eyesight has changed faster then would normally happen due to age - 62 last month. sense of smell is off as is nearly no taste. I used to do all the cooking - now it has to be by rote.
I am liquid diet only now. and that has to be done slowly.
I am stuck with 6 cans of ensure plus a day to stay alive, along with a hand full of vitamins that have to be crushed and mixed with yogurt and then thinned down so I can get it down, a spoon at time. No solids. they just wont go down.
I tear up when I smell fresh bread or Bar-B-Q from the neighbors.
I was forced to retire early on soc.sec. disability since I have no strength left to do anything for any period of time.
Sometimes I want to smack some people that say 'oh, but you are alive' - well there is doubt in my mind that this is a good thing.
Do I worry it will come back - not for a second - only that the excess radiation will end up messing me up again, and maybe worse.
It was a surface cancer - created from smelling industrial strenght roach spray that had been used illegally, in the place I had been staying while attending a 6 week training school. the building had to be torn down - now a used car lot. 2 deaths were attributed to the spray.
hell, I was just about to make friends with the roaches too. hahaha
I decided not to sue the Dr. at the cancer clinic due to the fact that they save a heck of a lot of breast cancer patients in this area. and, whats done is done. The dr. refused to accept the idea that the equipment was doing what I complained about at the time.
I discovered this site while researching (i was bored) the facial muscles and salivary glands in the unlikely-hood that I should ever win the powerball hahaha maybe stem cells could help ?? its a dream...
Did I whine too much for you - sorry - just venting.
If it does pop up sometime ? ! ? well... I have a 12ga. that will clear it out. wont go thru that hell again and end up worse.
I truly feel for the ones I have read here that are worse off than me. I can live with where I am - but I dont think I could be as strong as you other people.
nuff said
ted
:-)

#22852 04-21-2007 12:24 PM
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Hey Ted
Welcome, and thanks for sharing your story. I think you've had just as bad a time as most here, and you've come through it.

I find it really interesting to see how strong we really are, when things are truly "life and death". We're pretty adaptable creatures, us humans
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#22853 04-21-2007 12:33 PM
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I dont know if I could take what u went thru.
that just seems overwhelming.
ted

#22854 04-21-2007 12:52 PM
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Hello Ted.
I really feel for you. You really got a bad ride.I would sue the roach sprayers if not the Dr. also. But I quess thats up to you. My Aunt And Uncle are like that. They do not believe in sueing.You can vent here anytime Ted. A lot of people will correspond with you. I am yet to start my treatment, but I can not eat solid foods now.Here is something I do. Get a piece of that BBQ and suck on it for the juices. Just to savor the taste, Dip that bread in the sause and let it get soft and eat it. Try what you can. You can PM (private message) me anytime or e-mail me.Look in the faq and it will quide you. Gotta go. Stay in touch. I am one of a multitude who will help in any way we can.
Have a good evening Ted... Petey
PS. Read these forums, You can help people here with your experiance.You have a lot you can contribute! smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#22855 04-21-2007 04:35 PM
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Hi Ted !

Welcome to OCF. You are welcome to say what ever you wish. Maybe someone can offer some in-site or help. Everyone here has had different experiences, all have Oral Cancer.

I think it helps just knowing that someone knows how you truly feel. Take care and keep posting.

Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#22856 04-26-2007 11:02 AM
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Ted,

After rereading your post, I am wondering if you have ever had your throat dilated? I have done mine once so far. I will need another one here soon, due to having problems again swallowing. It really makes a difference.

Hope this might be something that will help. Do look into it. It is an easy procedure. I think they refer to it as "Esophagus Dilation."

Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#22857 04-26-2007 12:38 PM
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I am not sure if thats a problem. swallowing is when the throat constricts and sqeezes it down the esophogus. the soft palat is supposed to close so things dont go up into the nasal cavity.
mine does not close.
the lack of saliva means no 'oiling' of the mouth and upper throat, so stuff sticks.
if I had any teeth left - solids just dont go down - pill wont - they stick or go up.
so.. meds and vitamins get crushed - mixed with 2 spoon fulls of yogurt and thinned to liquid so it can be swallowed - a regular size spoon full at a time. this has to also be done with my head faceing forward. any downward postition and - - up the nose. It is a real process.
I drink fluids all day - same caution.
Used to be funny when u are about 8 to have stuff come out the nose LOL
just sad now. hahaha
I have an appointment with another oral surgeon, now that I am on medicare. my ENT is worried that the rotting teeth will rot the jaw/scull bones and be a real big problem. The learning hospital in portland wanted $3000 to take them all out. like I have $3 to spare.. LOL
A real fun procedure I am REALLY looking forward to,,, 'NOT' LOL
my first 4 years when I had teeth I could eat things that could be masticated ( my trismus hadnt gone very far to be a problem ) and they could be swallowed - carefully.
meat and bread (to name a few) cant be chewed without saliva.
so... there I am.
but - I will ask the ent if it might be nessessary.
thanks
ted
:-)

#22858 04-26-2007 03:00 PM
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Hello Ted.
You have me laughing down here in South Florida...You are a funny man! laugh It takes the edge off when we can make jokes of our defects and situations. I think you found a home away from home here. On a serious note though, there is a prosthesis for the roof of your mouth to prevent "backwash" for lack of a better word. It's an orbitor something or other. I believe Colleen aka August uses one. I think it's to replace the hard palate, I'm not sure. You said your soft palate. I'm sure they have some type for your situation. Someone will chime in here and give you the correct name. I am sure your problem has a solution. PS. You don't have to be 8 years old to laugh when someone has something come through their nose! eek It usually happens after an extremely funny joke or incident.
Take care, Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#22859 04-27-2007 05:13 AM
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Hey Ted.
The prothesis I was refering to is called an "obturator" and it is for the soft pallet. This is what you NEED. Please read the topic "Dr. Phan, I want your opinion of recontruction" written by August in the "introduce yourself" forum.(this forum) Dr. Phan DDS MS recently came to the OCF forum to volunteer his advice. He is member #4114. You should post him a letter or have him read your topic "Nasal Pharanial-whinning". Once he understands your problem he can guide you. THERE IS NO REASON, for you to not have the abilitly to swallow without having "backwash" through your nasil cavity. I urge you to persue this avenue of treatment. THIS WILL DRASTICALLY IMPROVE YOUR QUALITY OF LIFE! Looking out for you, PeteyB


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#22860 04-27-2007 05:16 AM
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This is pretty scary to me considering I haven't started my treatments yet. YIKES!!! What kind of questions should I ask my doctor before radiation? I feel bad for you.


Oral Squamous Carcinoma in the right tonsil, Surgery April 5th 2007, Non Smoker, Stage 3. Started IMRT treatment May 30th.
#22861 04-27-2007 07:49 AM
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Hey MK.
If you have questions about yourself it helps if you keep them in "your" posts. This way all your info is in one place. If you post "all over" we will not have your whole story. Look at the different type of forums and post under the appropriate one. Now that you have introduced yourself you may want to start a new topic in "currently in treatment". Name it something like, "Just starting radiation" Then write your question. You can respond to anyone you like, but do not post your questions in someone elses post. Keep surfing the different forums and see what people write in them. We were all where you are at one time. In a week you will have this forum mastered. Go open a new topic in currently in treatment, then put in your questions. Everyone here wants to help you get through this. And there are many different types of oral cancer. Looking forward to answering "your" questions in "your" post. Sincerely, PeteyB smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#22862 04-27-2007 07:59 AM
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I am surprised you havnt startd trtmnts yet.
me, they wanted like yesterday.
I assume you have had an MRI - so they know exactly where to focus.
you can ask what the total RADs are going to be.
should not be much more than 3000. I have been told by 5 docs that mine was over done. thus more colateral damage.
you will lose your saliva for a while - they say 3 to 5 years - but suposdly will return. brush you teeth A LOT ! ! ! believe it or not - 95% of your teeths protection comes from saliva. you can try the over counter products that say will help with low salive - didnt work for me but must for enuf others that they sell it.
if you notice ANY problems during treatmnt - DO speak up -
the chemo isnt so bad - its the later thats nasty with the vomiting. the throat is sore from the rad so it makes it worse -
get some ensure plus - or walmarts equat plus(cheaper and exat same stuff) I have been liveing on it for 11 years.
you may have to have a tube put in for feeding - not a big deal - no pain and makes feeding easy.
the whole thing will just be - routine - its that simple.
Speak up if something does not seem right ! Its your body and dont feel they are gods just people that have studied a lot in one area and they do make errors in judgment - only human.
the face mask will be fun - its amazing stuff.
hahaha I dont know what stage 3 is but it seems (vague memory) low so you should do well.
good luck
ted
:-)

#22863 04-27-2007 08:28 AM
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Ted, what do you think about the "obturator"? PeteyB


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#22864 04-27-2007 09:12 AM
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Thank you TedKenneth,

That helps a lot


Oral Squamous Carcinoma in the right tonsil, Surgery April 5th 2007, Non Smoker, Stage 3. Started IMRT treatment May 30th.
#22865 05-18-2007 03:23 PM
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Ted,

A few suggestions... My mom has the same problem with all liquids coming out her nose. She swallows and leans her head back (staring at the ceiling... This helps cut down the nasal exit. In addition, she eats and enjoys ice cream. Of course, it has to remain cold because as it melts, it eventually starts coming out her nose. Put the bowl in the freezer first... This will keep the ice cream solid while you eat it...

Paul

#22866 05-18-2007 09:20 PM
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I dont have to lean back - just straight ahead.
if she is new to this, just takes practice.
Of course I am talking a SMALL amount of fluid.
they will be no beer drinking contest here...
I would guess,, maybe a spoon full at a time.
you just learn how much will go before it doesnt.
hahaha
Ice cream - love the stuff - maybe should have said that in past tense - which makes me tense....
being a milk product - creates flem that does not go down normally like normalish people - so thats out cept for maybe a taste LOL
If your mom - during one of her ENT checkups has the doc say she has a lot of flem in her sinus - I have the fix for that. do it every morn in the shower. cleans out the back of the throat and nose quite nicely.
get a mouth of water - gargle forcefully - close lips and tip forward while gargleing - just flushes it all out the nose - I do it three times and it really is clear.
since I live on 6 cans of ensure plus per day - some of it gets up above the soft palat - this flushes any that is there.
this all seems gross - but it works and the ent does not have to suction it out before exam.
ted
:-)

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