| | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) |  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Just so you know, oral cancer expert, HPV expert, OCF science advisory board member, just became a member of the OSU James Cancer Center Staff and has left Johns Hopkins.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Is that good bad or indifferent.? I have no idea who it even is or if they might know something. I blame them for the loss of my teeth and the pain I am in constantly.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | Jim,
I think Brian is referring to Maura L. Gillison, MD, PhD who was at Johns Hopkins.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I saw the show and was really glad they are bringing light to HPV and oral cancer. I spend a lot of time telling my 18 and 20 year old of the dangers of HPV and HIV. I remember the "good old days" when a shot of pennicillin fixed it all. Now it's a death or disfigurement option. I have to admit as they talked about removing the mandible, my heart ached a bit thinking of our dear friend Minnie. My love goes out to her family and all the others that have been affected by this disease. Ed
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: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Eric, it was a 'moving' show, and I also was glad to see the topic on there. However, it was done, it still will bring attention to the disease. Especially, in these young patients with no 'good reason' to get it! My 31 y/o daughter also suffered this deadly disease. David, what IS causing this in these young people? so scary. I hate seeing anyone have to suffer thru this horrible cancer. It is the most wicked! (I am a Nurse of 30+ yrs and have watched multiple Cancer patients with many origins, oral is wicked..... It will end up being something so common in every day life for some of them I am afraid, and something we should have done something about sooner....... Head and Neck Centers across the country are seeing more and more young people with no 'typical' risk factors. I hope for you and pray for strength and courage to FIGHT this evil disease. Hang in there, be tough! 
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Linda, thank you for your thoughts, I do agree with you they did bring attention to this aweful disease no matter how it came across.
I've had time to think about this and if just one person get's scared by this episode because they don't want to be a "drooler" and get checked out by a dr or dentist then it's worth it.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | Linda, When I found out I had SCC (3 years ago) Moffitt told me my cancer was called the Old Foggies cancer because the typical victim is some old guy that sits in a bar all day smoking and drinking. I told them I didn't smoke, etc and they said "what difference does it make, you have the cancer". Well of course it made a difference to me and with the help of a poster on this site I was finally able to persuade Moffitt to test me for HPV but not until after my Tx was completed. At that time Moffitt said I was very young to get this cancer. For a while after that it was like you either used tobacco or you tested positive for HPV but I began to see younger and younger people getting this cancer. Now, say within the last year or so, I am seeing a lot of people who don't use tobacco and have tested negative for HPV so it appears that there's something else out there, maybe a different strain of HPV or a new virus or ??, that may be causing SCC. Two months ago I asked my docs at Moffitt and they also said they were seeing "those types" but they didn't offer any new found cause. In fact in Dr Trotti's lecture about OC in March he mentioned just the normal causes.
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: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | I watched the show with my sisters and we are glad to see they talked about the issues but horrified at how they presented life after surgery. Our mom had her mandible removed and she was in no way horribly disfigured or looked at as some kind of freak in public. I know the character in the show had suffered from a clef lip or something along those lines as a child and that was what they are emphasising. It was for some reason a very hard show for us to watch. My younger sisters felt like they were calling mom a freak. I know mom struggled with the change in her appearance, but it was in no way a deciding factor when it came to having the surgery. I was glad to see the HPV link being highlighted and it's always good to see oral cancer on main stream tv shows. They just made it out like the kid would have a big hole in his face. I don't think they even mentioned that a new bone would be made from the leg. Someone at ABC must know someone with oral cancer because greys anatomy had an episode with seth green in which he had a tumor around his corotid artery. Lets just say that didn't end well... I was wondering if anyone on here saw the show. I was thinking about you all the whole time I was watching it.
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | I saw the show and was glad to see the subject, I, also had a very difficult time watching it, my daughter had a horrible surgery, etc and did die. BUT, it is good to have it brought to viewers eye, since oral cancer in young people is becoming a more common occurence than in the past.
David, Christa(aka Jordan) was also told the same....and since her diagnosis in Jan. '07 there are many more cases of 'no know risk' and in younger people. It is an evil cancer.....
I wish there was something to do to try and find some commonality in it that may help others.
Sharing with all......and heartfelt caring. Miss my girl, and her little girl misses her too.....
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I feel this is a good place to share this story. It proves how many people have no idea about oral cancer. In my office we have a cafeteria with an outside vendor that runs it. I always wear my "Have you had one" button. The cashier said "have I had what?" I said "an oral cancer screening." She says "you mean, have I been checked for cavities?" I almost fell on the floor!!! So I enlightened her. Can you imagine?!?!?!?!?!?!?!?
I also started telling my mom about the side effects of radiation for OC and she was silent. I know she was remembering my doc saying I may need to do that in the future. I know if I have to face that I will have the WONDERFUL people here to help me through it.
BTW...I missed this episode. I want to check it out though...I'm interested to see how they do it.
Last edited by suzanne98; 04-10-2009 05:00 PM. Reason: Forgot a thought
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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