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#70163 - 02/21/08 12:30 AM Do symptoms come and go
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
If you have oral cancer, can the symptoms come and go or is it a constant feeling. Burning lips, teeth ache, gums swell, facial pain, throat feels like its swelling, roof of mouth is very sensitive, and light headed. All my symptoms seem to come and go through out the day. I'll feel ok one sec then 30 min later its terrible. Does this sound like oral cancer. I dont have any lump or bumps, but I do have what my ENT called an infection on my adenoids, or a large red mass, he said. Can anyone give me some info on symptoms.

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#70164 - 02/21/08 12:37 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
You have not mentioned any of the classic symptoms. Read this page. http://www.oralcancerfoundation.org/facts/index.htm
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70201 - 02/21/08 12:28 PM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
So cancer symptoms do or do not come and go. I have dizziness, ear ache sometimes,throat was sore it still comes and goes, inside of cheeks are swollen as is my gums and my gums have a rough texture on them, i have some black or bluish spots on my gums, my tongue is white, face has pain that comes and goes,lips burn and that comes and goes.

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#70202 - 02/21/08 01:11 PM Re: Do symptoms come and go [Re: Adele9699]
debandbill Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/12/07
Posts: 939
Loc: Punta Gorda, Florida
Adele,
None of us can diagnose your problems...only tell you what we experienced. It seems like your problems are so wide spread that it is very hard to discern what is going. The burning and white tongue sound like thrush and you would be a prime candidate since you have been on antibiotics.

In Bill's case, his symptoms were: sore throat, shooting pains in his ear, very loud snoring and lots of phlegm. We thought he was suffering from allergies when in fact he had a large tumor on his right tonsil and on the base of the right side of his tongue. His symptoms did not come and go.

You will get lots of answers from people about their symptoms and from some that had nothing but an enlarged lymph node. Everyone is different. You have to get your own diagnosis and the sooner the better.

Good luck with everything,

Deb
_________________________
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

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#70208 - 02/21/08 02:10 PM Re: Do symptoms come and go [Re: debandbill]
girlcat36 Offline
Gold Member (200+ posts)

Registered: 06/25/07
Posts: 214
Loc: massachusetts
The most constant symptom for me(besides a swollen tonsil) was fatigue. I had intermittant pain in the ear. I did not feel sick, just tired.
_________________________
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.

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#70232 - 02/21/08 08:08 PM Re: Do symptoms come and go [Re: girlcat36]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Adele,

I had no pain at all. I just noticed one side of my neck looked bigger than the other side and I mentioned it to my wife and all hell broke loose. She had me in my neighbor's office that afternoon and he was a plastic surgeon but she was bound and determined to have a doctor see me that day.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#70237 - 02/21/08 08:55 PM Re: Do symptoms come and go [Re: davidcpa]
Cathy412 Offline
Member

Registered: 02/21/08
Posts: 1
Loc: usa
I am new to this everyone. I had a punch biopsy on a lesion in the floor of my mouth yesterday and waiting for the results tomorrow. I am so scared! I found this website while I was looking for information about the symptoms I have been having. I have had the lesion in my mouth for at least 9 months so I have no idea what stage I am if it turns out that this is in fact SCC (oropharyngeal) probably due to HPV. It is encouraging to see the support that is out there. My question is, can they tell what stage I am at just by the biopsy, or are there other tests I will have to go through first? Also, how soon will my treatment/surgery? start? Any help/info is appreciated.

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#70254 - 02/21/08 11:52 PM Re: Do symptoms come and go [Re: Cathy412]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Thanks guys, I know I'm jumping the gun, but I'm just really scared. I go back to my ENT Monday, so maybe he can find something out for me. This burning in my mouth is killing me. Today I did notice some white on the inside of my jaws looks like spider legs or really thin white lining of something. Still concerned and more scared after seeing that. Thanks Again.

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#70261 - 02/22/08 12:28 AM Re: Do symptoms come and go [Re: Adele9699]
emmylou1951 Offline
"Above & Beyond" Member (300+ posts)

Registered: 06/07/07
Posts: 510
Loc: Central North Carolina, USA
Cathy: Hi and welcome to OCF! Keep us posted as to the outcome of your biopsy. Then, read, read, read! but don't let fear overwhelm you. We're here to help, just let us know! Hoping that you get a good report...

Lois & Buzz in NC
_________________________
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!

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#70399 - 02/23/08 12:12 PM Re: Do symptoms come and go [Re: emmylou1951]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Hi Adele,

I have a lot of burning, and throat/tonsil pain.
Saw doc 2/20, she believes it is oral lichens planus,
I also have the rash on my wrists and feet.
She gave me three meds, dapsone, dexamethasone, and diflucan.
I recommend you research oral lichens planus from the home page of this website. Please feel free to send me a note if you have any more questions or concerns.
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#70405 - 02/23/08 12:59 PM Re: Do symptoms come and go [Re: Dell1064]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Well my throat kinda feels like something is stuck in it, but more towards the top. My mouth is my main concern right now, lips burt 3 days ago, then stopped. Yesterday my gums were hurting and burning, and today the right side of my face and mouth feels numb. I dunno whats going on, all I know is that is driving me CRAZY!!! I never know what I'm going to wake up to the next day. Do you guys think I'm going to the right kind of doctor? I too have quit smoking, after smoking for over 15yrs. Congrats to u Dell for doing that. It's the hardest thing I have ever had to do. But all this worrying is killing me. It's easy to say not to worry, but hard to do.

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#70455 - 02/24/08 03:14 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
You are asking questions that no one here can really answer. Everyone has different symptoms, you have got to see what a doctor who has looked in your mouth, samples tissues etc. has to say. Anything else that we tell you is going to be speculations and guessing by lay people. You are going to have to wait for the doctor's conclusions. So far though you sound like someone that has infections (viral or bacterial). The emotional ups and downs of waiting are certainly not easy, but you've got to deal with it.... the alternative is just to add anxiety issues to the fire.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70493 - 02/24/08 05:23 PM Re: Do symptoms come and go [Re: Brian Hill]
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3550
Loc: San Francisco CA
Many of us had no symptoms at all or symptoms that were pretty vague until the tumor got very large. In my case I had a tumor growing on the right tonsil and, at first, the only symptom was some slight horseness. After a period of time elapsed (and several visits to a GP, etc.) it got large enough to displace my uvula and cause sleep apnea type symptoms at night. During that period, I also had a sensation of something being caught in my throat. By this time it was readily visible, yet until I went to a knowledgable ENT, was undiagnosed as cancer. I never had any experience of pain. A few here have had some pain associated with their cancer but every cancer seems to be a little different so the only way to know for sure is what Brian said in his post and wait for the official diagnosis. It could be many things besides cancer so try to take a deep breath, get some rest and get it ruled out.

I might add, as well, that once you start looking closely in your mouth, you will notice parts of your anatomy that you have probably never been aware of. I thought that my salivary glands on my cheeks were a recurrence and my ENT and I had a good laugh over that one (after the fact of course). Many people, like myself, for some reason, tend to bite themselves and will develop a whiteish callous along the centerline of where your teeth meet.


Edited by Gary (02/24/08 05:28 PM)
_________________________
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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#70495 - 02/24/08 05:36 PM Re: Do symptoms come and go [Re: Dell1064]
wallyswife Offline
Senior Member (100+ posts)

Registered: 10/09/07
Posts: 104
Loc: London, Ont.
For those of you with oral lichen planus do take note that it is one of the risk factors for oral cancer to develop so keep a close eye on it. My husband had lichen planus for approximately 15 years before he developed oral cancer. A specialist dentist discharged him after several years of surveilance and said it was rare for it to become cancerous. Do practice good oral hygiene and have regular checkups and cleaning of your teeth. A good idea is also to go to a dentist that has a VELscope for oral cancer screening.
_________________________
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.

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#70499 - 02/24/08 06:12 PM Re: Do symptoms come and go [Re: wallyswife]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
Lichen planus is not one of the major risk factors for oral cancers. There have been reported cases of SCC arising in a bed of LP, but the jury has never been in on whether or not LP was a precursor event to the development of OC. It is relatively common condition, with thousands of people in the US having it. As the previous poster said, any transformation is rare, if anyone can actually prove that it is the beginning of cellular changes that lead to dysplasia and malignancy at all.

Remember that tissue fluorescence, the science behind the VELscope, is non specific to oral cancers. It finds all kinds of things that have lost their fluorescence, including pizza burns, cheek bites, lichen planus, highly vascularized normal tissues like those under your tongue, keritanized and harmless tissues like the lina alba on the cheek that Gary mentioned, and much more. There are many reasons that tissues can lose their fluorescence and cancers are only a small fraction of them. While a useful tool, it is not diagnostic, only approved by the FDA for discovery (not diagnosis) of suspect tissue, and is only an adjunct to a proper visual and tactile screening by someone that understands what they are looking at.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70617 - 02/27/08 01:24 AM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hello everybody,
Well went back to my ENT yesterday. The mass on my adenoids had reduced, but not completely gone. I did show him my tongue, the places on the inside of my cheeks that was white, and he said it is leuplakia. I ask him, do I have cancer of the mouth or throat? He said no two or three times, but that word leuplakia, which he said was probably caused by antibiotics and my teeth against my cheeks, because they swell sometimes, was the cause of this. I go back to see him in a month, but I am still concerned. Doesn't leuplakia mean cancer or becoming cancer? From what I've seen on the net, it does. Luckily, my GP made a mistake and made me two different appointments with two different ENT's and I see a different one Thursday. I want to have a second opinion. Even though the mass has reduced, I guess meaning infection, I am still having a sore throat, white coated tongue, the white film that is on the inside of my cheeks, hurts at my tonsils and mouth and facial pain. I saw a neurologist today and he, of course, didn't know what was goin on, so he set me up with an MRI w/contrast and I will have one of those done. My ENT seemed to think it was more of inflamation of my nerves. I dunno, but I'll see I guess. I'll get back to you guys after my next appt.
Thanks for all the info everybody!!!

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#70618 - 02/27/08 01:31 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
It does not mean cancer. It is really common in smokers. Only about 20% of the time does it ever become dysplastic, which is a step towards malignancy. The usual treatment for leukoplakia is to have it lasered off if you or your docs feel it warranted. If your tongue is white you likely have a candida fungal infection, and that would account for some of the burning sensations that you have mentioned in previous posts. I am surprised that he did not comment on that. But if this is a candida infection, a week on Diflucan tablets and it should clear up.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70622 - 02/27/08 01:39 AM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
I did take diflucan for a week and I have nystatan. They do not help. The diflucan did help or at least cleared my tongue up a little, but it came back after 3 days. So are you saying that leuplakia isn't something to worry about? Or should I go have it removed right away? If all this was a yeast infection, how did I get that before I even took any antibiotics. I am so confused and frustrated.
Thanks for the reply Brian. I appreciate everything you can tell me.

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#70623 - 02/27/08 01:54 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
You can get a fungal infection all on its own, you don't need antibiotics or radiation treatments etc. to let it out. Read the main web site page on Candida, there is lots of information there. When you saw progress with the Diflucan that worked at least in part and for awhile, that should have told you something, (you were on the right track with the right diagnosis) and your doctors (with a stubborn case of candida) should have continued the Diflucan treatment for a longer period of time till it was completely eradicated. I would watch the leukioplakia for a while, it often resolves on its own. If you see any color changes or texture changes in it, then I would get it biopsied or lasered off in ther areas when change has occurred. It is not cancer at this time and may never be cancer.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70665 - 02/27/08 08:11 PM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
What about a sore throat that is never ending? I am having an awful time believing what is going on

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#70667 - 02/27/08 08:49 PM Re: Do symptoms come and go [Re: Adele9699]
girlcat36 Offline
Gold Member (200+ posts)

Registered: 06/25/07
Posts: 214
Loc: massachusetts
A never-ending sore throat CAN be a symptom of allergies. It was in my case; I never realized I had allergies, because I thought allergies meant lots of sneezing and watery eyes. When I sought Tx for my tonsil my ENT said he could tell I had allergies by looking in my nose and throat. My Tx story http://www.caringbridge.org/visit/teresadillon
_________________________
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.

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#70782 - 02/29/08 04:21 PM Re: Do symptoms come and go [Re: girlcat36]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
MY ENT DIDN'T SAY ANYTHING TO ME ABOUT ALLERGIES. WHEN HE TOLD ME ABOUT THE INFECTION ON MY ADENOIDS, I EVEN ASK HIM WHAT CAUSED THAT OR WHAT COULD'VE CAUSED THAT, HE DIDN'T KNOW. I LIKE THIS ENT, I'VE TOOK MY KIDS TO HIM FOR YEARS, BUT WHEN IT CAME DOWN TO ME, HE SAID HE HAD DONE EVERYTHIG HE COULD DO. I'M WAITING FOR THE NEUROLOGIST TO CALL. THEY STILL HAVEN'T CALL WITH MY APPOINTMENT FOR THE MRI. SO I GUESS I'M GONNA CALL THEM. I WILL ASK THE NEXT ENT ABOUT ALLERGIES. I'M CONCERNED WITH THE LEUOPLAKIA RIGHT NOW.

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#70817 - 03/01/08 12:41 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
You are again asking questions that absolute answers cannot be provided for. There is no way for him to know how you got any infection.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70871 - 03/02/08 12:59 AM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
No he may not know, but he could tell me if it was caused by allergies or so on. For the last two days my throat has been extremely sore, I've been taking some syrup I had that has condene in it, and I am having awful pain in my ears, along with a butterfly sound or a fluttering sound in them, but my ears are hurting and burning alot. I don't get to see the next ENT until March 20th, and I have my MRI done on March 6th, of the brain. I'm hoping it will also show the throat and face also. They are doing one of the brain, so they can see my nerves. They think the facial pain I am having could be caused by some nerve damange of nerver inflammation. We'll see I guess. I'm sorry for asking all these questions Brain, but I just need to find out as much as I can. My thought is that all of you have been there, so most of you can answer the questions I have. I thought this is what this forum was for. If I'm wrong let me know and I will find another. I may ask some dumb questions, as you say, but they are questions that I have and want to know.

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#70878 - 03/02/08 03:12 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
NO he could NOT have told you it was caused by allergies. How would he know? He could give you a list of ALL the things that MIGHT have caused it perhaps, but what good would that have done you? A differential diagnosis starts with a list of all possibilities, and one by one eliminates them until the culprit is left. Sometimes like in MS, it is only the elimination of all other possibilites that you end up with a diagnosis. You have a long journey to sort out the many things you have going on.

You can ask all the questions you want here, but understand you are describing things that are not customary to the symptoms that the majority of us have had related to oral cancers, so we can't help you with most of them. You clearly have many medical issues, but they are not typical of oral cancers, and so what people have to offer here, (except to encourage you to continue to seek out doctors that will continue to explore your symptoms looking for answers) isn't much.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70890 - 03/02/08 02:40 PM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
well from what I have read on oral cancer on the internet, I have all the symptoms that are posted on every site. I was just concerned for me and thought all of you could help me. I'm sorry if I wasted everyone's time. I disagree with you Brian when you say my symptoms are not customary. One lady on here said the only way her husband was diagnosed, was because he had pain in his ears. I do know a continuous sore throat and pain in the ears are a symptom and I have had both for almost 8wks straight. So I take it you are telling me I am on the wrong forum, so I am sorry and I will no long post here. Sorry for bothering everyone!

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#70898 - 03/02/08 08:43 PM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
Well I guess I'll be the bad guy. But the truth of the matter is until you get additional opinions and examinations/test from doctors that you are seeing, and move towards definitive diagnosis of the multiple things that you have going on, not all of which are classic symptoms of oral cancers, the most that people here can do is give you moral support, which I think they have. When you read back through your list of symptoms which has increased since you have started posting, many of them do not fit the classic symptoms. Chronic sore throat certainly does but you have a doctor that has labeled it an infection. You have developed an ear ache which if chronic could be also, and you have smoker's leukoplakia. You also have a litany of other things which are not, like burning lips and gums which I and others suggested might be a fungal infection. It would seem likely you have multiple things going on. Could oral cancer be one of them? Anything is possible, but to get an answer from people who haven't seen you, and who are not doctors, only speaking from their own experience, isn't going to answer your many questions with any certainty. That is what I have said to you.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70905 - 03/03/08 01:24 AM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
No Brian I have not developed new symptoms, these are symptoms I have had all along. I wanted advice from people who have gone through this and wanted to know their symptoms. Since I do have an anxiety and panic disorder, many doctors when they hear that just brush everything off and label it as that. So the smyptoms that I have is causing me extra anxiety. I didn't mean to make you sound like a bad guy, but my feelings were hurt when you made it sound as though I was just posting for nothing. All these are real and everything I have said is real. I just want to know what some of the other experienced before they found out they for sure had the cancer. Everything I can find out helps me a great deal.

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#70909 - 03/03/08 02:25 AM Re: Do symptoms come and go [Re: Adele9699]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4726
Loc: Laguna Niguel, CA
Well, when you get additional information from your doctors, I and others will be interested to hear what they have to say. But try to remember that there are no absolutes in any of this, and asking questions that do not consider that point isn't going to help you.

It is a good thing that you are cognizant of your anxiety issues. Having had to deal with some of this myself, I can first hand tell you that those emotions can cause a cascade of physical events, which are quite real, but subside when the anxiety is relieved. I can manifest rashes, tachycardia, chest pains, and much more that mimic a heart MI for instance, if I let my anxiety issues get out of hand. If you do not think there aren't any psychic debris that goes along with helping people with cancer, you are mistaken. I talk to people in end of life oral cancer issues as a matter of routine... I assure you that I see myself in them every week. The clinic I go to that treats this disorder has patients who can actually depress their immune system over several days of panic attacks. When that happens they have herpes simplex outbreaks, and Candida outbreaks (both of which are in their systems and in balanced control already) and develop other real physical manifestations.

This is not the same as saying it is all in your head, but it is saying that your head can control the physical self. If someone on here says, as you have pointed out, that ear pain was the thing that took them to the doctor, and where a diagnosis of something more was determined, what that really means that oral cancers are very insidious. They do not present with easily detectable symptoms until they are will developed most of the time, and that allows them to go unnoticed and undiagnosed. So an ear ache takes you to the doctor who then discovers a lesion on your base of tongue or tonsil. That is not the same thing as saying that the only thing going on was an ear ache, that was the only thing that the patient noticed. You have multiple things going on, many of which could be tied to more simple explanations such as infections, dental/oral issues, etc. Think Occam's Razor.....

(A rule in science and philosophy stating that entities should not be multiplied needlessly. This rule is interpreted to mean that the simplest of two or more competing theories is preferable and that an explanation for unknown phenomena should first be attempted in terms of what is already known. Also called law of parsimony.)
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#70953 - 03/03/08 11:52 PM Re: Do symptoms come and go [Re: Brian Hill]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
I do know that anxiety causes alot of things, trust me I've been through most of them. I do not think this is anxiety, it just feels totally different. I do want to tell all of you, I don't know if anyone has ever heard of it, but I have been doing oil pulling. This is a very simple task to do everyday. I have been doing it for a week now, and this is suppose to pull toxins out of your body, also cure diseses with long term use. Anyways, as I said I have been doing it for a week now and it has helped me so much. Although I am still experiencing a sore throat and ear ache, they both come and go. After I do the oil pull it takes alot of my symptoms away for long periods and lets me feel almost normal agian. If anyone is interested in this you can look up oil pulling on the net. There is alot of stuff out there on it. Thank You Brian for all the advice you have given me. I'm waiting it out, and hopefully this will be just an infection or something like that. I hope. I'm sure you see alot of devasting things everyday. My heart goes out to you. I could not do something like that. Anyways, wish me luck with my MRI Thursday the 6th. I'm praying everything will be Good.

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#70965 - 03/04/08 08:07 AM Re: Do symptoms come and go [Re: Adele9699]
AdeleE Offline
Supporting Member (50+ posts)

Registered: 04/07/07
Posts: 64
Loc: Canada
Hello: Adele
I am an Adele also. I am not any expert, but sounds as though you have some form of a virus. When my cancer presented my symptoms were a lump, ear pain and fatigue and that's all.
However, having said that it sounds as though your problem needs medical treatment and you must be sure that you find out exactly what you are dealing with. In my experience we must all be our own advocates with our illness and keep going until you are sure there is no cancer involved.
Best of Luck
_________________________
Adele,
mucoepidermoid carcinoma of the submandibular gland, 05/06, left neck dissection, gland and tumor removed, intermediate grade, margins negative, 9 lymph nodes negative, no rad, no chemo,
11/07 surgical biopsy of lymph node left neck, no cancer!

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#71002 - 03/05/08 01:05 AM Re: Do symptoms come and go [Re: AdeleE]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Thanks Adele,
I'm gonna check out everything I can.

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#71056 - 03/06/08 02:45 PM Re: Do symptoms come and go [Re: Adele9699]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Hi Adele,
I'm glad you quit smoking, that's great! Way to go!
Did you do it cold turkey? (My preferred method)

I have a name of another anti fungal medicine, like Diflucan, but the research shows that it kills aspergillous and other molds, unlike Diflucan which doesn't. Right now, I'm not on the meds as my liver enzymes were too high, so I get bloodwork on Mon. 3/10 to check the liver, and if it checks out, they will let me go back on the anti fungal meds, at which time I plan to ask about Noxafil instead of Diflucan. I'm currently researching fungus and cancer and don't like what I read. I want this fungal crap gone! But I am only a lay person with big interests. I'm avoiding all foods contaiminated with mycotoxin, or help mycotoxin grow (grain, corn, peanus, alcohol, brewers yeast, mushrooms, white rice, breads, and sugar) am working on a list of things I can eat to focus on instead of the things I can't eat. It doesn't appear that a systemic fungal problem, such that causes oral lichens planus can clear by just one week of antifungal meds, and can take months, years? to clear.
My mouth is so sore I'm willing to do most anything to make it better.
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#71387 - 03/12/08 02:59 PM Re: Do symptoms come and go [Re: Dell1064]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hello Dell,
I don't know if what I have is a fungal thing or not. I'm still going to docs and it's like nobody knows anything,nor can they diagnose anything. I went back to my GP Monday, he gave me another one of those crazy looks, he put me back on Diflucan for a week to see if it helps. I still have no idea what's goin on with me. My throat is still very bothersome, feels like someone is choking me and my mouth is still bothering me, my gums are swelling still, and my throat feels like a ball in stuck in it. I'm gonna try the diflucan again and see if it helps any. I still have more appointments with the ENT and Neurologists, so I'll see if they can come up with anything. I hope you do well. I'm still struggling with smoking. Unfortunately I love to smoke, don't know why, I just do. I know it's really bad to do, but I am gonna quit totally. Congrats to you for quitting cold turkey. I don't know how you did it. This is the hardest thing I have ever done. I also stay away from alot of the foods you mentioned. Just like you I am willing to do anything to make all this go away, whatever it is, I am just absolutely miserable!!!! Good Luck to you!!

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#71389 - 03/12/08 03:11 PM Re: Do symptoms come and go [Re: Adele9699]
Markus Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/01/07
Posts: 666
Loc: Atlanta
Re smoking...
this probably does not help your sore throat.
just consider that scalpels, needles, retractors forceps and pincers (ok maybe not these) generally win when they are used against soft oral tissue!

This sure as hell motivated me.

M
_________________________
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.

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#71759 - 03/21/08 09:16 PM Re: Do symptoms come and go [Re: Markus]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Yeah i do think of stuff like that all the time. I'm crazy I guess. I would love to quit, but just don't know how to do it. So in the last few days I've seen another ENT, who sent me for a CT w/contrast scan of my throat, just went today to have that done. I pray this will show what's going on. I've also had an MRI of the brain, not heard anything from the doc yet. This new ENT, also said he didn't see any signs of oral cancer, but he put me on Prednisone, a large dose for 15 days, Tagament, and Prilosec, on a daily basis for 14 days. I think they keep thinking I have GERD, but I rarely ever have heartburn. I dunno, getting more and more use to feeling terrible!!! My GP also tried Diflucan again, took a 4 dose this time, my throat still has been sore, and feels like it is tight and feels like a ball stuck in it. My gums are still burning and swelling. My voice is hoarse, once in awhile. I still have a white tongue and a white film on the inside of my cheeks. Does anybody know how to get this off. I try not to look inside my mouth or throat anymore, cause I just get upset. Sometimes I wonder if I could just have tonsilitis or something like that. I will wait and see, but this new ENT made me an appointment for May 1, that's a long time to wait, but I go to see the other ENT, Monday, we'll see what he says again.

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#71937 - 03/26/08 02:01 PM Re: Do symptoms come and go [Re: Adele9699]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Hi Adele,
How are you doing?
I haven't found a way to get the yeast off my tongue/throat/cheeks yet either. But I am rinsing my toothbrush out in white vinegar to avoid recontamination.
My throat is still sore, and I am hoarse too. There are lumps and bumps in my throat, on my tonsils, and white spots all down the left side of my tongue.
Sounds like we are still stuck in the same boat!
I'm ready to kick the captain to the curb! LOL
I've been in this spot since mid Jan. and it needs to be resolved! I try not to look anymore too, same thing, just get upset. I started the meds back up on 3/10. Praying for some relief soon. I'm scared. Hey, with the smoking, try www.whyquit.com, read everything you can there. Then, when you've quit cold turkey for 72 hrs., join Freedom from smoking and download a quit counter. I too loved to smoke. But like my dad now says, I like to smile, drink, eat, talk, laugh more. I can live without smoking, but I may not live if I kept smoking, that was my biggest motivation to quit. Seeing my dad undergo 3 extensive surgeries to remove the cancer from his face, and the reconstructive issues he is having did it. That's not to say I believe smoking was the only cause, but it didn't help.
I'm here for you if you need me.
Please let us know how your tests come out.

_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#71953 - 03/26/08 09:11 PM Re: Do symptoms come and go [Re: Dell1064]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Hey Dell old buddy, glad you are still posting. I'm doing my best to get back into the swing of things. If my tongue and lower inside lip would ease up , I would actually feel pretty good. I like your advice on the smoking issue.
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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#71963 - 03/26/08 10:49 PM Re: Do symptoms come and go [Re: EzJim]
luvmyhubby Offline
Platinum Member (300+ posts)

Registered: 02/19/08
Posts: 341
Loc: Montgomery, AL
Hey guys - no clue if you can take the new smoking drug Chantix with all the other stuff you are taking, but I smoked for almost 20 years and the Chantix worked great for me.
_________________________
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!


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#71995 - 03/27/08 01:17 PM Re: Do symptoms come and go [Re: EzJim]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Hey Jim! Thanks ~ glad to see you!
Hope your tongue and lip chill out and give you a break!
If I get to be one of those "annoying" ex smokers, I'm counting on you to let me know! ;o)
Miss ya buddy!

_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#71996 - 03/27/08 01:18 PM Re: Do symptoms come and go [Re: luvmyhubby]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Way to go Michelle! Celebrating with you! ;o)
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#72018 - 03/27/08 11:39 PM Re: Do symptoms come and go [Re: Dell1064]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hello everybody!!
Ok I've got an update. Went back to my first ENT, he looked in my nose with the scope again, guess what?
The infection, or big knot, as he called it is still there. This is my adenoids, he said it was my adenoids and not the tissue around it, but the adenoids themself. He has decided to take out my adenoids and possibly my tonsils. He also said that there is a 1 in 1000 chance that it could be cancer, he is doing a biopsy also after he takes them out. My neurologists said my mri that I had with him was just fine, but he wanted me to have the surgery and then come back to see him in 6wks, if I was still having problems. I am still in major discomfort and pain, I can't wait to have the surgery, o and by the way guys, I have never had surgery or been put to sleep or anything like that. I'm really nervous about it, but am so wanting it to hurry and be April 1st. I'm praying that it is just an infection and that after they are taken out everything will go back to feeling normal. I said it's kinda weird that somebody is actually looking forward to having surgery, but I think it will end my problems. The ENT said if it's not there then it can't cause problems. True I guess, if it is not cancer. Still keep me in your prayers, as I do all of you. I am making that day my official quit day of smoking!! After this NO MORE SMOKING!!! I will keep everyone updated. Thanks Dell for your reply. I no longer think I have yeast infection, but if you are experiencing anything like I have been, I will put an extra prayer in for you. It is miserable. I hope you get well soon. Eat lots of plain active yoguart. It does help and soothes the mouth also. Good luck!! Let me know if you come up with new stuff to try for the yeast!!

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#72032 - 03/28/08 10:48 AM Re: Do symptoms come and go [Re: Adele9699]
Suess57 Offline
Gold Member (200+ posts)

Registered: 11/01/07
Posts: 212
Loc: Houston
Good luck with the surgery Adele. I know you feel a lot better just knowing some type of action is being taken. Hopefully, this will put an end to your symptoms. Congratulations on deciding to quit. It will be well worth it. I know it is for me.
_________________________
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.

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#72039 - 03/28/08 01:13 PM Re: Do symptoms come and go [Re: Adele9699]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Hi Adele,
I'm so glad your getting somewhere!
Taking out the adenoids sounds like a logical place to start.
I hope this takes care of it and let's you get your life back to normal! Quitting smoking is the best thing you can do to help the surgeon do his job, and also for your recovery.
God speed to your surgery and recovery!
Make sure to let us know the date of your surgery and if it will be outpatient/inpatient.

Best of luck!
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#72106 - 03/29/08 11:14 PM Re: Do symptoms come and go [Re: Dell1064]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hello Dell,
My surgery is scheduled for April 1st. This Tuesday. I can't wait!!! I am miserable!!! Congrats on quitting smoking Dell. This Tuesday is mine and I can't wait to be smoke free. My surgery is an out-patient surgery, the ENT is going to do a biopsy after it is removed. I pray that this ends all my problems. I will update everybody and I would like to say a big THANK YOU to all you guys, because through all this I feel like I have had someone to talk to about my problems. I will always be thankful for that, and I will be here for all of you.!!

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#72126 - 03/30/08 12:53 PM Re: Do symptoms come and go [Re: Adele9699]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Adele,

I can imagine that your scared of having the surgery, I'm praying for your peace and for your good outcome. I hope you have someone with you that day.

Sending you a big bouquet of virtual spring flowers and a hug to hang in there until it's over and you get good news.

We'll be here for you to hear how it went when you're able to write.

Relief is right around the corner! ;o)
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#72234 - 04/01/08 12:54 PM Re: Do symptoms come and go [Re: Dell1064]
Geo Offline
Contributing Member (25+ posts)

Registered: 03/30/08
Posts: 28
Loc: New York
Blessings to you today. Pray all goes well with surgery.
_________________________
Anxious caregiver.
Squamous cell ca cheek/jawbone/mandible/Stage IV positive lymph nodes.Surgery, Jan 08. Removal of cheek,removal of lymph nodes.Currently undergoing week4 of radiation treatment--to receive 33 treatment in all.Takes Fenyl patch and hydromorphine.

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#72273 - 04/01/08 11:32 PM Re: Do symptoms come and go [Re: Geo]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hello again
I've got an update. Well today was just terrible. I did not get to have my surgery. When I got to the surgery center this morning, my ENT took me to a room, I knew something was up cause they usually don't do this, anyway, he said he couldn't do the surgery today because my WBC was really high. When I say high I mean high. My wbc was 20.5. This is extremely high from what I have seen. I still have no fever. The ENT sent me for a chest x-ray and a urine screening with culture. Then he wanted me to go to my GP. So I went to see him today too. He took another urine test, came back fine. He didn't think I had pneumonia. Said my lungs sounded fine. I did just get off a large round of prednisone, I saw on the internet that this could elevate the wbc, does anybody know. My GP didn't really know, he didn't order anymore tests to be done. I have started antibiotics again for 7 days. I will go on April 8,2008 to have my wbc checked again. My GP also said that my thyroid was a little enlarged. Does anybody have any ideas as to what might be going on with me. I feel like I'm choking and I am having trouble breathing some. I kinda feel breathless. Any ideas??? I'm at wits end. I will call my ENT tomorrow to see if anything showed up on my x-ray. I'm also gonna call the other ENT to see if I can get the results of my MRI of the throat. I've still not heard from him. It makes me so mad when a doctor orders a test for you and doesn't give you the results till months later. As for the wbc, does anybody have any ideas as to what else could be going on with it being 20.5. I know that is high. I've also been extremely weak and tired for about 4 days now. I'm just so afraid that they, the docs, are gonna let whatever is going on, get worse and that is what I'm trying to prevent. HELP!!!!!

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#72303 - 04/02/08 12:04 PM Re: Do symptoms come and go [Re: Geo]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hi Geo,
I saw that you had alot going on with your mouth and so forth. Could you tell me your symptoms? If you don't mind me askin. I just need some relief, I think I'm stressing myself out thinking about all of this. Just wondering. Thanks for your reply on my post. God Bless You.

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#72304 - 04/02/08 12:05 PM Re: Do symptoms come and go [Re: Adele9699]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
Hey Dell1064 how is the no smoking thing going? How did you do it cold turkey? Did you have withdrawl? How do you quit cold turkey/

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#72310 - 04/02/08 02:05 PM Re: Do symptoms come and go [Re: Adele9699]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Oh gosh Adele, you did have a terrible day.
I don't have any knowledge about WBC.
I'm wondering why they started antibiotic, what for?
That's what kicked up the thrush in my mouth...

About the smoking, The Human Rsource Center at my work offered smoking cessation classes, 6 weeks and they offered free nicotine replacement therapy. When I asked our counselor what the best method to quit was, he said "Cold turkey". I went home, thought about that and found www.whyquit.com, and read through some of the material. I was glad to find out that more people quit and stay quit by doing it cold turkey than any other method. The next morning, I put my cigs down. I was highly motivated to quit. Afer 72 hours, I applied to become part of the "Freedom from smoking" group located at the top right column of the www.whyquit.com web page. I was accepted, and downloaded my "quit counter". I have found lots of support there, and the quit counter keeps me motivated. I don't want to blow it! It was hard, but I had seen my dad battle oral cancer, twice in four years. I had seen many oral cancer patients in his ward over 3 week time frame. I developed oral lichens planus at the same time, and my son let me find out he was smoking about 5 cigs a day. After 27 years, I finally found my motivation to quit. I was scared! I will not tell you it is easy. It is not. If you are highly motivated, and committed to quit, it can be done. I had many moments where I had to "grit" it out. Nicotine is possibly the "best" drug out there, it does it's job very well! When I began looking at cigarettes as "nicotine delivery devices", just like a needle and syringe to a junkie, it was easier to put a negative into my mind where a positive had once been. I replaced "nicotine delivery devices", with celery and cream cheese. I'm a celery chomping fool! But my mouth was too sore from lichens planus to chew gum, so the celery helped my mouth, and smelled fresh and clean where cigs do not. I printed out things that motivated me, like this "Mandatory replenishment cycle" from the website that shows your either going to keep feeding the nicotine addiction, or your going to go through withdrawal, most people continue to feed the addiction. I wanted to fight back against oral cancer. I wanted to be "one less", and I wanted the cycle of smoking in my family to stop before it claimed another of us. For me, failing this attempt at quitting was not an option. Thats where the website helped me so much, the motto there is, Never Take Another Puff, Ever. Once you find out that you can ignore a craving and survive it, you grit it out, and you get through the next one, and the next one, and you tell the whiney 2 year old in your head that is begging for nicotine, NO. NO. NO. And pretty soon, that whiney 2 year old in my head, quit asking. Further and further apart the urges came and went. And today, I'm at 60 days free of nicotine! I've never been proud of myself, but I am now! It took a lot of strength and determination, but I did it! Because my mouth is so sore, I also changed my diet at the same time. I gave up all foods containing yeast, flour, sugar. I became aware of disease thriving in acidic conditions, but not in alkaline conditions, so I eat mostly fresh foods now, mostly vegetables. I'm not completely vegan yet, but much more than ever before. I eat celery for breakfast, salads for lunch that I try to pack at least 7 different vegetables into, including avocado which is supposed to help kill precancerous cells, and might help with cancerous cells too, and vegetable soup for dinner. I like eating this way, and my immune system, which has been compromised by Lupus is responding very positively to my changes. I feel like a new woman, just need to get my mouth to quit hurting.

I'm sorry to write such a book, just so passionately involved in these life changing modifications, and want to share them with you, since you asked! I hope I may have helped you somehow. My heart goes out to you and I hope they figure it out and get it taken care of soon.

p.s. my son quit the day after I did! ;o)
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#72339 - 04/02/08 10:48 PM Re: Do symptoms come and go [Re: Dell1064]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
WOW!! is all I can say and great for you. I am now beginning to quit smoking. I hope you don't mind me talking to you about it. It really sounds like you know what you're doing and a very smart person. I did have a terrible day yesterday. The ENT had given me antibiotics to start after my surgery. Since I didn't have my surgery and my white blood count was so high, he told me go ahead and start the antibiotic. He was thinking that maybe I had a UTI or masked pnemonia. I called docs today. The urine test came back fine, they hadn't got the chest x-ray back yet. I call the other ENT that orded a MRI of my throat, they said it was fine, except that I had a cyst in my sinus. I've had this cyst for over 6 months now and am now wondering if it has anything to do with what all is going on. I also am wondering if this could be a tumor instead of a cyst. I don't see that doc again till May 1. All I know about wbc is that if it is high it is a sign of infection. 20.5 is very high wbc. I'm trying to not stress over all this but it is just so hard to do. It's like I'm getting no answers. Maybe if I could actually have my surgery to have my adenoids out and tonsils, then maybe I could see if that is what is causing everything. I don't know, I still as in the dark as ever. My GP did say that my thyroid was a little enlarged yesterday. I probably need to have it checked out too. I'm just a mess. Dell I am going to the web site you gave above and see if it can help me in quitting for good too. I want to be smoke free for the rest of my life. I agree with you, nicotine is a very addictive drug. I have never really thought of it as getting a fix, but it is true. We are like a junkie everytime we smoke. I feel bad about it now, cause my ex-husband turned out to be a junkie and I hated all drugs and still do to this day. I'm gonna use that from now on and I think it will change the way I see smoking. Thanks Dell for talking with me. I really enjoy reading from you. Anything you can come up with that you think will help me I'm all for reading, doesn't matter how long it is. I enjoy hearing from you!!!

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#73732 - 04/27/08 12:15 AM Re: Do symptoms come and go [Re: Adele9699]
Adele9699 Offline
Contributing Member (25+ posts)

Registered: 02/21/08
Posts: 32
Loc: United States
well guys I had my surgery. Had my tonsils and adenoids removed. that was the worst pain i have ever felt. had it done on the 14th of April and I'm still feeling pain. I'm not sure yet if it has helped any of the symptoms that I was having before because I'm on pain meds and still healing from the surgery. I let you know if anything has gotton any better.

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#73738 - 04/27/08 10:11 AM Re: Do symptoms come and go [Re: Adele9699]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Lets hope for the best. At one point when Moffitt thought my primary might either be in my rt tonsil or BOT, their H & N surgeon planned to put me under and take biopsy's until he found my primary. I went under knowing I would wake up without my tonsils. I had already pre ordered my ice cream. LOL When I woke up my wife was there to tell me that they found my primary at the BOT and it was the first site he examined and he thought that he got all my cancer at the primary site with the bio he took so I didn't loose my tonsils. After reading yours and several other posts about the pain associated with loosing your tonsils I'm very glad he stopped.
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#73741 - 04/27/08 12:33 PM Re: Do symptoms come and go [Re: Adele9699]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Hi Adele,
Glad your surgery is now over, heal soon!
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#73757 - 04/28/08 12:24 AM Re: Do symptoms come and go [Re: Dell1064]
denise123 Offline
Contributing Member (25+ posts)

Registered: 02/23/08
Posts: 27
Loc: Long Island, NY
Dell,

I want to thank you for sharing the information you did about quitting smoking. I have long been a closet smoker and have tried more times to quit than imaginable. I am going to the website you posted right after this. It is definately time for me. Especially now that I have been spending so much time lurking on this forum. Every time I smoke, I think about all the suffering people have gone through because of it. It has really taken the fun out of it. Thank you. I want to be "one less" too.

Denise
_________________________
CG to Mom. Dx 2/08. Mucoepidermoid carcinoma in the minor salivary gland in lower lip. Surgery 3/12/08. Margins clear but not clear enough. Surgery scheduled for 4/23/08. Surgery Successful. Clear Margins

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#73936 - 05/02/08 12:27 AM Re: Do symptoms come and go [Re: denise123]
denise123 Offline
Contributing Member (25+ posts)

Registered: 02/23/08
Posts: 27
Loc: Long Island, NY
I said I was going to do it and I am. 2 days, 13 hours, and 4 mintutes smoke free. Thanks again Dell for the information.
_________________________
CG to Mom. Dx 2/08. Mucoepidermoid carcinoma in the minor salivary gland in lower lip. Surgery 3/12/08. Margins clear but not clear enough. Surgery scheduled for 4/23/08. Surgery Successful. Clear Margins

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#73943 - 05/02/08 10:33 AM Re: Do symptoms come and go [Re: denise123]
Dell1064 Offline
Senior Member (100+ posts)

Registered: 01/20/04
Posts: 104
Loc: Apple Creek, Ohio
Denise,

That is so far out groovy cool I can't believe it!! Yes!!
In my mind, when we quit, we're "sticking to the man"!
Those big tobacco companies aren't making any money off of us today! We figured it out, we can live without those things!
I'm so glad Denise, and blown away that I could be part of it!
Thanks for posting your wonderful news!
_________________________
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"


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#73959 - 05/02/08 05:52 PM Re: Do symptoms come and go [Re: Dell1064]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Great job all of you. I know that quiting is the hardest thing you've ever done including out Tx so just keep saying "I will never use tobacco again as long as I live."
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#74066 - 05/07/08 02:39 AM Re: Do symptoms come and go [Re: davidcpa]
emmylou1951 Offline
"Above & Beyond" Member (300+ posts)

Registered: 06/07/07
Posts: 510
Loc: Central North Carolina, USA
May I say that I smoked the last cigarette from a pack of $5.02 Vantage 100's at midnight on December 31. I had smoked for 40 years! I will not tell you that it has been EASY, but it HAS been worth it! If I can kick the habit, anyone can!
_________________________
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!

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#74067 - 05/07/08 04:04 AM Re: Do symptoms come and go [Re: emmylou1951]
denise123 Offline
Contributing Member (25+ posts)

Registered: 02/23/08
Posts: 27
Loc: Long Island, NY
That is so great to hear. I encourage ANYONE who wants to quit smoking to go to www.whyquit.com. I never could have done this without the information on that site. I tried sooo many times to quit and never had success. I agree it is not easy, but it's not as bad as I expected. I am still early on in my quit, but after 20 years of this horrible habit, I am done.

If you still smoke.... go to www.whyquit.com (Just give it a try. What do you have to lose?)

Denise Smoke-free 7 days, 14 hrs, 43 minutes.
_________________________
CG to Mom. Dx 2/08. Mucoepidermoid carcinoma in the minor salivary gland in lower lip. Surgery 3/12/08. Margins clear but not clear enough. Surgery scheduled for 4/23/08. Surgery Successful. Clear Margins

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#74074 - 05/07/08 10:52 AM Re: Do symptoms come and go [Re: emmylou1951]
wilckdds Offline
Patient Advocate (old timer, 2000 posts)

Registered: 04/20/05
Posts: 2219
Loc: Newtown, PA
Congratulations Emmylou,

That is a feat that deserves a great round of applause.

Jerry
_________________________
Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 7 year survivor.

"Whatever doesn't kill me, makes me stronger"

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