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OCF Founder
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OCF Founder
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Well I wrote that while I was stuck in an airport waiting to come home from the hospital. It was just an exercise in being bored, on a delayed flight, and to keep you guys cognizant of the fact that I am way far from perfect, and you all think too high of me.

So especially the close where I said it's all about me… SOME PEOPLE TOOK LITERALLY, AND I ACTUALLY GOT TWO NEGATIVE PM'S ABOUT THINKING I WAS ONLY CONCERNED WITH MYSELF. I mean who could read that and not get that it was a spoof? I didn't really know what to say to those people… I will stay with science postings in the future. No one mistakes them for selfishness. This post is not a joke. I guess that I am so dry and science based so much of the time, and I only talk about serious things for the most part, that some people couldn't wrap their minds around the fact that I was kidding….


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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Patient Advocate (old timer, 2000 posts)
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Posts: 2,671
Brian, to borrow words from a favorite song, please - "don't change a hair for us, not if you care for us. . . . you make us smile with our hearts". Not everyone understands humor or intelligent discourse.


Last edited by Anne-Marie; 01-29-2014 04:29 AM.

Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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No worries Brian, wether a joke or not, and I didn't take it personally or the wrong way, but it was well written, and maybe you should do more writing? Sometimes I read what I write, and wonder if it's miscommunicated. Hope all was well with the hospital.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Sep 2012
Posts: 381
"OCF Canuck"
Platinum Member (300+ posts)
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"OCF Canuck"
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Posts: 381
Damn, I thought it was funny...

People need to chill out. Plus, even it was all about you, who cares. I want stuff to be all about me, all the time...never happens, but a girl can dream...


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Jun 2013
Posts: 262
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Posts: 262
Brian, it was witty and marvelous, don't you dare let one or two confused people dampen your light!

Have to say, though, that the level of detail was such that I sussed a grain or two of truth? In any case, thanks for all you do!


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: Jun 2009
Posts: 875
"Above & Beyond" Member (500+ posts)
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Posts: 875
Hello Brian:
Can you tell me what kind of gum I can get to replace the Biotene? My dentist recommended Trident with Xylitol, but after buying some, I noticed in the ingredients, the first thing listed was Sorbitol (which acts as a laxative). Aspartame was listed and I remember a controversy about that causing such things as multiple sclerosis, Lupis ethanol toxicity, blindness, spasms, shooting pains, seizures, headaches, depression, anxiety, memory loss, birth defects and death. What do you use or think is safe? Thank you for your reply.
Julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Joined: Apr 2008
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I saw a documentary on aspartame and never went near it again. It's been awhile, but what happened is the studies were showing damage to the immune system, the FDA approved it anyway, and immediately after a few FDA officers were given high paying jobs at the place that makes aspartame.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
Joined: May 2012
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I like using Tom's of Main clean & gentle with fluoride toothpaste.


T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
glocita #177100 01-30-2014 11:35 AM
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Posts: 875
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

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Glocita: What type of GUM do you use.
Julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Joined: Jul 2009
Posts: 1,402
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

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Posts: 1,402
Well, idiot that I am I failed to notice the size of the tube when I'd first hit Amazon for Bioextra. For ten bucks amurkin they give you a generous 50 ml, so you're paying essentially double what Biotene goes for. Seems a bit steep to me. I intend to keep looking!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 13 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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