#67642 01-15-2008 05:32 PM | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | i went back to ent today he couldnt give a clean report like last time.said he wasnt markedley concerned the spot he saw wasnt like last time.HE did move my prt up a month.he said it wasnt ulcerated. but my vocal cord was swollen.told me twice he didnt want to scare me.im so scared .
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Well done for starting your own thread! If he says don't be scared, don't be! I know that's easier said than done, but at least you're being 'dealt with' sooner, rather than later--hang in there!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Good answer Brenda. Listen to her lolita and don't think about, LOL as if that is easy, but Brenda has been thru all the hell there is and gives good advice.
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
| | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | THANKS guys it is so hard.i can go to dr and walk out and never remember what they said . seems i only hear the scaary parts.should have wrote it down now iwonder if that is what i heard .so afraid it will go some where else.now afraid for the pet since they moved it up.i know this sounds crazy.
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Lolita,
We always tell people to take someone with you to help you remember. If that's not possible, take a recorder and tape the visit. If that's not possible, tell the doc to slow down and write his responses down so you can read them later. Write your questions down in advance as well.
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.
| | | | Joined: Oct 2006 Posts: 46 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2006 Posts: 46 | Lolita, You can also ask the doctor for a copy of the chart note that will be generated after your visit. It sometimes takes a bit of time, but that medical record is YOURS and you have a right to a copy of it. If there are things you don't understand, you can take the note back in with you at your next visit and ask for clarification of terms and whatnot. Good luck!
CG to spouse, tonsillar SCC, T2N0M0, tonsillectomy 9/06, 35 rad tx finished 12/06, no chemo. Positive PET 3/07 in tonsillar fossa (residual tumor), surgery 4/2/07 composite resection tonsillar fossa and BOT w/forearm graft and right ND.
| | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | Hey how is every one doing//? Im still learning to type on this.Can any one tell me how to stop this ear ache.?Igot some pain pills be afraid to take them.Went back to ent mon here is what he said.there was marked edema of the right arytenoid.what could that mean. And there wasa nodular apperance to the cord its self.when i go back he will see if it is gone along with the edema.they moved my pet up.to feb instead of march.if it is still there then a bio nothing in the neck every thing else was clear. pray it is gone and nothing else shows up .im so afraid it is going to move some where else thank you so much
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Lolita. 2 things. You should never leave the doctor's office without understanding what he is telling you. Never. It is his responsibility to explain it to you in a manner that you will understand it. Don't worry about him thinking you are dumb, or whatever, you can't make good decisions unless you understand things, and he's the guy that is supposed to explain it to you, in plain English that you understand. But if you don't tell him that you don't understand, he isn't going to make any further attmpt to explain it in simpler terms.
Number two - you are asking people on this board how to stop your ear ache, which no one here can actually tell you. We are not doctors, but it stands to reason that if you took the pain medication that the doctor who does know how to stop it gave you - the pain would go away. Does this not seem logical 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. | | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2007 Posts: 64 | DEARbrain thank you. im going to get my onc to explain my vocal cord nodual to me ,. it just scares me that they moved up my pet scan,. im so afraid it has moved some where else.he said he didnt want to scare me .we will do the pet then if it lights up a bio after he looks agai with the scope.im so scared i feel like giving up.
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | C'mon Lolita---I haven't given up yet--none of us have! I think what you need, besides talking to your oncologist, is someone maybe just not in the medical profession to talk to you. Personally, as well as coming on here, and having a loving partner, I couldn't cope without my network of friends--and over the last couple of weeks the 'designated' support workers attached to the Health Service. Have you close family and friends? Does anyone come with you to appointments? If not, can someone on here recommend a support service available/accessible for Lolita in her area? As we all well know--cancer isn't just in the body! Hang in there Lolita, we're all thinking of you and it sounds like you shouldn't need to worry as much as you are, but I know that's easier said than done!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Very good answers Brian and Brenda. Never mention the words give up Lolita,, they are for losers and we are all winners in these forums. Take the pain meds and live your life like we all are. It's not bad when you keep the positive thoughts going.
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
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I've said many times that this cancer battle is 50% mental for the patient and a lot of that is going on behind the scenes so to speak and drains what little energy we have without us knowing the true culprit. I never thought I was depressed but I bet I was and just didn't know it. I mean how can anyone NOT be depressed dealing with all that's thrown at us !! That's one very important value of this site as it helps all of us affected by this cancer deal with it better.
Last edited by davidcpa; 01-18-2008 01:51 PM.
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I think I am depressed too David , but will never admit it. Damned old hard head. LOL I just like to make people feel better and hide my true feelings.
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
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jim,
However you and your body deal with it is good as long as we don't read you jumped off some bridge. Just kidding Jim.
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Maybe sky diving without a chute?? LOL
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
| | | | Joined: Jan 2008 Posts: 1 Member | Member Joined: Jan 2008 Posts: 1 | Hi everybody, my name is Don, from Sacramento, California. I'm 48 and i had been smoking cigars for the past 7 years and having about 6-8 Alcoholic drinks a week. I quit 2 weeks ago (01-09-08. I was smoking 1 cigar a day for 5 years. I had smoked 1/2 cigar a day the last 12 months. I have been.I've had occassional bouts with mouth irritation during the years, but after a week my mouth would always feel better.I felt my mouth became irritated at times more often in 2007. I would see a doctor and they would not see any thing. Starting in December '07, I got a small irritation that sometimes felt like a small cut on the tip of my tongue.I did not want to deal with it because it was Christmas. What a JACK ASS!!! I've been. I went to the doctors on 1-13-08, she said it was an ulceration. She made an appointment to see an ENT. The earliest appointment they could give me was 02-12-08. I found out my dentist had a new procedure for oral cancer screening. You swish your mouth with a solution, then they examine the mouth with a special light. I had it done 01-22-08. He said he did not see any cancer,but said that ulceration was probably leukoplakia. I called the ENT office again to see if i could possibly get a sooner appointment. Turns out my HMO has another office 12 miles farther away that had a ENT that could see me today 01-23-08. I could'nt believe it. I went in and had a biopsy on the tip of my tongue that day. I am awaiting the results. I am very scared. 5 years ago, I felt a pea sized lump on one of my testicles. Turned out it was benign. That's the worst thing i had been through until now. Everyone on this website is amazing. the stories i read, the surgeries,treatment people have had, everybody is so incredible. You are all my heroes. God bless you all. | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Hi Don, hopefully you will receive good news. Re smoking. Please do not pick it up again. Tongues and sharp instruments do not coexist happily!
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.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Don,
We have a saying around here that it's not cancer until you have been told it's cancer so ease up a tad and lets hope it's just an irritation. Leukoplakia simply means white patch but whatever it turns out to be, now would be a good time to give up the tobacco.
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Well said there you old fox. LOL Just listen to these people Don > They keep me straight and have helped me a lot...
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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