| | Joined: Feb 2009 Posts: 20 Member |  Member
Joined: Feb 2009 Posts: 20 | Thank you, I have been wondering about some of those myself. | | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 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 Posts: 1 Member | | Member
Joined: Jul 2009 Posts: 1 | 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 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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 
ChristineSCC 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 | | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | 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.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
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) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | 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 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 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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | David, I bet that felt good! The power you have! That is what is great about OCF -- very little "junk" mail on here, or as I called him a "vermin".
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | None of us with THE POWER are here 24/7 so it helps like you all do when you PM me or even quicker, e mail me but that aside the first thing I check when I come on is new posters and I examine their Profile to make sure there are no links, then I read any posts they have made and sometimes I even have to put them on a "Watch Posts" alert.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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