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PaulB Offline OP
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World Head and Neck Cancer Day has been designated as July 27th, as noted in the OCF News Feed.

It's the first year, and I haven't noted many events, except Memorial Sloan Kettering Cancer Center in NYC, who were integral in this designation, Dana Farber in Boston has a luncheon, but it's for medical students, dentists and clinicians, and another event in India.

To mark this day, MSKCC is holding a free seminar to discuss the importance of Head and Neck Cancer awareness, screening and treatments. Guests are also invited to visit a health resource fair with representatives from MSK's department of integrative medicine, nursing, nutrition, resources for Life after Cancer, Speech, Hearing and Rehabilitation Program and The Tobacco Treament Program.

A light breakfast will also be held smile

The event is open to anyone, and I'm not a patient there, but hope to obtain further information, if I'm able to go. A recent cancer patient/survivor conference I attended on July 12th at NYU was worthwhile, and hope the same here. Hopefully in future years on WHNCD more events will be held.

https://www.mskcc.org/event/world-head-neck-day

http://oralcancernews.org/wp/ifhnos-and-ahns-to-proclaim-july-27th-world-head-and-neck-cancer-day/


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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Thanks, Paul. That's the first I've ever heard of such a day. And with such short notice. If there's anything going on here in Los Angeles I haven't heard of it.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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PaulB Offline OP
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Yw, David. Actually, I read something about it from the head and neck cancer Congress meetings held last September in NYC, which Michael Douglas spoke at. It's the first year for this day of observance, and I was only reminded recently from a MSKCC patient booklet I obtained, and the OCF news page. Otherwise, I would have forgotten, and I don't anyone that knows either, but some were glad we have a day, at least to bring attention to this disease. I'm going to a SPOHNC meeting this week, and will mention it there also.

I checked some of the major CCC for any WHNCD events, but couldn find any, at least on this day, and the organization says if not possible, an observance could be made during the same week.

Here is a YouTube video for WHNCD which President Bill Clinton, Dr. Jatin Shah, from MSKCC, Actress Catherine Zeta Jones, and Michael Douglas speak about.

https://m.youtube.com/watch?v=7Qf7aICoQbQ&autoplay=1




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: Jul 2012
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PaulB Offline OP
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I found a winner on the West Coast David, a luncheon at Keck School of Medicine at USC for WHNCD. Not sure who it's open to, but there is a contact number to call.

http://www.keck.usc.edu/events/world-head-and-neck-cancer-day/


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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While I am very much in favor of anything that will rise awareness of our disease, when all this was being decided two years ago, both OCF and the Mouth Cancer Foundation our sister org in the UK asked that it be in one of our two months which already have a huge following in major markets. But since this has surgical organizations engaged in putting this on, they had their own idea. Actually that statement is not true - it has TWO organizations putting it on, and they have made a little world publicity for it. But no other organizations in any of the European countries have bought in for instance. This is so typical. They wanted something unique to them.

You would think we could all pull together for something to make a bigger noise, but this is getting no press anywhere of consequences. While I find it disappointing, I have worked with the surgical H&N group off and on for many years and I have found they have their own ideas. If they got good buy in on this from other surgical groups around the world, it would be great but they did not, and they got no buy in from the many advocacy groups out there like OCF....because they didn't ask any of them to be engaged. Had we not reached out to them we would have had no discussion of it at all. But at the end of the day these are just two organizations using the word WORLD when it is far from it. I hope it does some good, but their words are big, however their vision of what something like this could be was myopic.

Last edited by Brian Hill; 07-21-2015 07:14 AM.

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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PaulB Offline OP
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Thank you for the insight, Brian. It's too bad it wasn't during the months of observance, and help sought from other organizations such as OCF, as you mentioned. I was happy to hear about a designed day for our cancer, but I couldn't find much information, participation about it, except limited information, publicity from the two surgical societies, and just one or two events, as I know why now, is disappointing.


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: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Joined: Jul 2009
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[quote=PaulB]I found a winner on the West Coast David, a luncheon at Keck School of Medicine at USC for WHNCD. Not sure who it's open to, but there is a contact number to call.

http://www.keck.usc.edu/events/world-head-and-neck-cancer-day/ [/quote]

That was really nice of you, Paul. I wasn't thinking clearly I guess when I made my post, because it happens that I'm leaving on vacation that day. So wouldn't be here in LA anyway! (I slap my forehead) Appreciate your taking the time to look it up.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18

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