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I am out of town at a cancer conference and I was just asked to review this thread. I'm in the middle of the conference doing 12 hour days. So until I understand what transpired here, and why this thread is becoming insensitive I need everyone to quit posting about what was done, what OCF should and should not do. I have read this briefly, but don't have all the facts. IF anyone wants to PM me with their take on please do, I'll look at things Monday morning when I get back in town. In the meantime, change the subject that has spiraled this thing into a negative thread.


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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OK, so with a direct ask of the moderators - I asked if any post OTHER THAN the salespersons post had been deleted, and that was a no. I have no reason to think otherwise as I know how even keeled Christine is. Regarding the removal of the salespersons post. These forum are for survivors, patients, family members and occasionally a medical dental professional (who we ask not to identify themselves as such for liability reasons). Unless OCF has OKed prior to any posting, what a company, university rep, researcher, media person, or anyone outside that group is going to put up, this forum is not for their input. Their posts will be taken down.

The participants of the forum are encouraged to speak from their personal experience. This is a different thing. It also infers that their comments are not an absolute, but their singular experience, which may or may not apply to a biologically different tumor, etiology, or human being. They may be enthusiastic about the outcome for themselves, and others may have anecdotally similar outcomes, but they are not versed on what is happening with that drug, technology, etc., what interactions it has with other protocols, what populations or etiologies is does not work equally well for, and the list goes on. Therefore, while they certainly can make others aware of something that they found useful, once they become advocates for it, their role has changed. They are advocating for something that they do not have all the information about as I just stated. This is a razor's edge. If it worked for you it is appropriate to say so, and suggest others talk to their treating professionals about it, as those patients and their treatment team will have all the information necessary to decide that it is or is not appropriate for them, none of us do. This is how we learn from each other.

We take down and ban posters EVERY WEEK that have an agenda to promote something. It can be as crazy as you can imagine, or it can be a rep from a legitimate dental or medical company. We don't let salespeople, who have an unknown basis of knowledge, post opinions, suggestions, or comment on these forums. That is a hard line in the sand. They are not someone that has been through it, they are not doctors, and while they may be well versed on their product, they are not experts.

I have just spent the last four days with researchers at the Head and Neck Cancer Symposium in Phoenix. There was a ton of new information presented - and some things we thought we knew about H&N cancers, HPV, and certain drugs, we actually had wrong. This is the nature of medicine and research. It is ever evolving. This is one of 9 cancer conferences I will attend or speak at this year. This does not make me an expert. I will also every week be interfacing with researchers that are funded by your donations, and I will be interacting on 7 oral cancer task forces that I belong to from the government to professional medical dental societies. What it makes me is someone that understands completely the long road to know something for certain, and how many ways there are to get it wrong. This boils down to one idea. These forums are read for content. We try to correct things that are scientifically inaccurate, and remove things that potentially are harmful. To do less would be irresponsible. Again, I am not an expert, but at the end of the day I am responsible for defining what has efficacy and we will discuss (with the backing of OCF's Science Board) or what topics and information is too thin scientifically to be appropriate for us here. You can see how seldom I intervene in the discussions. That is because we have a group of people that appreciate the nature of these boards, and understand that they belong to a group in which scientific rigor is important, and they like that. They also behave accordingly.

IF something is taken down, unlike if a post is edited, there is no mechanism to leave behind the comment that that has taken place, the post is just gone. It takes many hours a day to monitor these boards, greet every new comer, edit, answer questions, and wear a black hat occasionally. My personal policy for this I have asked Christine and any other monitors to adhere to. The first rule of which is regardless of being right or wrong, posters who are rude get their posts taken down. Period. Civility reigns here. Disagreements like the PEG wars, (more on that later since some interesting new data has just emerged) are fought here, without name calling, snide remarks, or passive aggressive behaviors. I usually have had some PM time with someone that has become a problem tone-wise or information-wise, and there are several posters here that know this to be true, but if they do not listen to reason, the bottom line is that these boards are not a democracy. Repeat offenders, your posts will be deleted. There is too much important work going on to have a multiple posts back and forth with someone for the umpteenth time arguing about if something was stepping out of bounds or not. Luckily this whole thing seldom comes up, and with this group of supportive and knowledgable people, it is a rare occurrence.

Anyone who would like to have it be a free forum, please note that there are now three on FB, (which will catalogue and sell everything they learn about you to anyone willing to pay for it) one of which was run by a friend of mine Mike, that have imploded because there was no control of what the content of the room and forum was. Mike finally just walked away from his group of several hundred people, fed up with the bickering and how much work it was to keep things on track. A couple others have sprouted up, but they are in arguments about science, attitude, appropriateness of what is being put up and so much more already. When you are hiding behind a screen name on an unmoderated forum, I do not believe that it is a healthy environment, and it sometimes brings out the worst in people. If you like that confrontational environment, please feel free to join those groups. There are other boards from other organizations you may choose to join as well, but we have watched them ouselves, and had others tell us how poorly they are monitored for correctness of information being put out. This is a difficult task as you have to be on top of what the current information is, you have to know how to dissect a published paper to decide if it is biased, or so much junk science paid for by a commercial company in the background, and much more. Our posters here are really good at sifting out the marginal stuff, and we don't see so much of that. Kudos to those of you that are the backbone of good info, you know who you are without my pointing to you.

So there you have it. Long winded as usual. I would hate to loose any posters over these rules, but we may. Bottom line the foundation has rules because they are necessary. We tried it without so many restrictions in the beginning, and I was not proud of what we had. It has taken 14 years of evolution to get to the rules that we have, and for the most part they work. They will not be an environment that everyone can live in. But no person coming here will be spoken to in an inappropriate manner, no sales person will post on these boards, no one will try to persuade you to buy anything, no privacy that we can control will be breeched. We will all do our best to help those who need it at the level that we can even if it is just moral support; which while I have spoken a great deal about science, is vitally important.

I would like to thank the people that watched this threads spiral downward and took the time to PM me with their candid observations.


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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We have revisited all this at least a few times over the decade I've been here and you know why OCF gets my support, Brian, and that's the science behind everything. That is why I send people here. I appreciate you taking the time to reiterate all this and I'm looking forward to hearing new information on the PEG debate, although I've steered clear of those wars for a long time. I think that discussion is the only one I have not been a part of.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Oct 2011
Posts: 30
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Brian, fully support Christine and your handling of this " deletion issue".
Look forward to your report on new findings about H & N cancers and HPV.


DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
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Brian,
Thanks for taking the time to reply and it demonstrates your commitment to keeping OCF a forum of the highest caliber. As you state, there is a tremendous amount of effort expended behind the scene to ensure the forum remains a viable and credible place to learn and exchange ideas about oral cancer. Keep up the great work.

Ditto on any information you have about PEG usage during treatment and short term post.



Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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PaulB Offline OP
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I had several follow-ups with my RO, ENT, and Proton Radiologist the past week or so. The first two doctors, who did my carotid artery resection, IORT, were happy to see me post treatment, and still call me miracle man, I guess from not suffering a stroke or death from the several surgeries, procedures, and radiation, and be walking around seemingly unscathed. I guess I'll have to live up to their expectations, and is difficult to complain of anything minor, but my ENT asked about the coughing, change of voice, and said we can deal with that after the scan, which is the collagen injection to the vocal cord. All were happy with my neck healing, and scheduled my three month post treatment PET/CT on May1st, and will see them soon after to go over the results. Knowing myself, I'll probably go in the next day to get the written report, and CD copy of the scan from the outside radiology center. My RO asked about my teeth, and said I was waiting to do HBOT, before the extractions, and said I'll have to wait a few more months for that...meaning after a clear scan.

My taste came back fully two weeks ago, and would say it is on level what it was prior to this last Chemoradiation, meaning it's not great, but doable, and working on my food bucket list, which can be surprising to some even with my tooth loss, and severe trismus, which is about a 12mm mouth opening.

Tomorrow I'll have blood test, and see my MO next week. I bought a wrist BP cuff and see my pressure drops when standing, Orthrostatic Hypotension. Yesterday, it was 115/80, 90 pulse rate while sitting, and upon standing, it dropped to 80/50, 101 pulse rate. This has been gong on for a while, so I feel, and was thinking my bp increases, but instead it drops, and heart rate goes up, even before my last treatment, surgeries, and could be related to dehydration, anemia, medications, combination, and so on, but will mention it to my MO next week, and cardiologist, when I get a chance to see him. I still have to follow-up with my PCP, nephrologist, and Opthomologist since I haven't seen them in several months, but in no rush either to do that.

Attended a SPOHNC meeting, and the guest speaker was a dentist who is a tonsil cancer survivor having gone through the same misdiagnosis as many here, with antibiotics prescription, and spoke about oral care, answered questions. A few things I highlighted, among many things discussed, was recommendation for:

Soft or extra soft tooth brush. brush 3 minutes, 3 times per day gently without a lot of pressure. If you see the bristles start to spread you're brushing too hard.

Fluoride toothpaste, gels are helpful to prevent cavities, and believe Prevident 5000 was mentioned. Using a high pH (9.5) water to rinse with.

Floss, gently flossing 2-3 times per day, after every meal is ideal.

Fluoride Trays, best used immediately before bedtime, and after brushing, flossing. Trays should be left in for 10 minutes being careful not to swallow. You may expectorants any excess saliva. Thoroughly clean and dry try's. Do not eat, rinse or drink after using the trays, and is better to go straight to sleep.

Physical Therapy, if you have bern given muscle or jaw exercises or massage, or Therabite has been prescribed, try to comply.

Things to Avoid, alcohol. Including mouthwashes, caffeinated beverages, acidic, spicy or salty foods, chips, and other carbohydrates that might stick to your teeth.

See you dentist 3-4 times a year for examination, cleaning, and consider fluoride varnish.



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






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Glad to get the update. Been wondering why you been laying low. As to all the dental maintenance stuff. I guess I'm just going to get them all yanked and get back a half hour every day to do something else. Doing all that is just way past where I can go - giving up coffee??? Really???


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
PaulB Offline OP
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I'm not giving up coffee either. I have a Kuerig, a Nespresso, and a stove top espresso maker! That's one thing I can taste. Remember the report that says coffee may prevent oral cancer by 50% lol.


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 2013
Posts: 94
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Posts: 94
Congratulations of finishing the treatment PaulB! And thank you for the dental updates, very helpful. Best of luck with everything!


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Posts: 26
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Paul, You've convinced me - a toothbrush goes to work with me form now on.


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
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