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Joined: Feb 2009
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Thank you, I have been wondering about some of those myself.

Joined: Mar 2009
Posts: 54
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Posts: 54
MEC Mucoepidermoid cancer


Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
Joined: Jul 2009
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I'm not sure if this is the place to tell you who I am and what my problem is. Last Thursday I was told by an ENT specialist that I have cancer. I don't know exactly what it is called. It is on my gum and soft tissue under my tongue. I am going for surgery on July 17th and I am scared stiff. I do not know what to expect.
I don't know all of the abreveations yet as I am a newbie.Thank you for listening to me.



Arlene

Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcoem to OCF Arlene. You will soon get the hang of this forum. There are so many helpful, encouraging members who will help guide you thru this.

When you want to start a post its easy. Just go to the topic you and and then click NEW POST. Also under the tab of My Stuff, click on profile and write a few things for a signature. These 2 things will help us to help you.

Have you had a second opinion? How was your cancer determined? Biopsy? Did you have a CT or PET scan yet?

Dont worry about the abbreviations, you will unfortunately understand them all very very soon. There is so much info here you can read for hours and get quite an education. Just remember, everyone is different. They respond to treatment and medicines at different rates. Also recovery is at ones own pace. You can get a general idea what to expect but its up to you and your body how things go from there. Dont let someone else's story scare you. Prepare for the worst but hope for the best.

Take soemone with yoru to appointments to write things down. Ask questions, surgeons operate thats their job. Will you be having radiation and chemo? Who will help you and be your caregiver? Start lining up friends relative and anyone who offers to help. Keep a list, even if they pick up your meds or do a load of laundry it will help.

Best of luck, I know you are scared and its ok, we will help smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2002
Posts: 4,912
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OCF Founder
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Posts: 4,912
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greatgam4 If you read the first page of this thread that you are on there are all the abbreviations there to get you started. Print it out so that you can refer to it as all this begins to play our for you. Once you start your own thread of ideas and questions people will find you and continue to follow you, helping as you need it. Start in the introduce yourself forum.


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.
#120635 08-19-2010 06:37 AM
Joined: Oct 2008
Posts: 251
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Joined: Oct 2008
Posts: 251
BOGUS POST copied from BRIAN'S POST above: #87854 - Sun Jan 11 2009 06:52 PM


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Yep. Little Sir (or Ms) Echo was very busy last night copying posts by Brian, DavidCPA etc and reposting them without attribution. Each and every post is just a paste and copy from a prior one in the thread. Quite juvenile. Not even amusing as some are the original poster's concerns. The key is the profile: zzjo770 is a "seo" which stands for Search Engine Optimization in regular acronyms but more accurately here as Shallow Entertainment Oaf
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2006
Posts: 8,311
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I deleted him and all his posts earlier today.


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: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
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Joined: Jan 2006
Posts: 756
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David, I bet that felt good! The power you have! That is what is great about OCF -- very little "junk" mail on here, or as I called him a "vermin".


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
None of us with THE POWER are here 24/7 so it helps like you all do when you PM me or even quicker, e mail me but that aside the first thing I check when I come on is new posters and I examine their Profile to make sure there are no links, then I read any posts they have made and sometimes I even have to put them on a "Watch Posts" alert.


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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