| Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | People mentioned HPV, but your particular cancer "sometimes" is associated with people who worked with nickel in their lifetimes, and in the plating industry. The studies on this came out of a wonderful long tern database on cancers kept in Norway. (I will explain why there if anyone is interested, but it is not pertinent) It is also associated with a different virus, (not HPV) the Epstein-Barr virus. The relationship between viruses and cancers is long known and it surprises people that the are so many direct cause and effect associations between them. Just to give you a quick list of the well known, cervical cancers - HPV16 &18, posterior oral cancers - HPV16, Kaposi Sarcoma - kaposi sarcoma virus, liver cancer - hepatitis B&C, Merkel cell carcinoma (a skin cancer) - polyoma virus, nasopharyngeal cancers, and Burkitt's lymphoma - Epstein-Barr virus, and of course Leukemia (blood cancer) HTLV-1 (human T-cell leukemia virus). For most of these the virus is hard to early diagnose, except in cervical, our sister disease. As you can see I'm interested in all this, but the most important thing at your stage of thing is less about cause, and more about beating it back, and returning to a normal life. On that note, people here are full of good advice, work arounds for things that don't go as planned or side effects, and it's a good place to safely rant (away from family and loved ones) when thing drag on, or weigh you down. You can post openly, or as you develop a sense of who's who and find friends, private message or email with them. This group will be here for you as needed, they are an amazing community of people.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Funny Charm, I'm in the same boat with you and Jim wishing I had been diagnosed with a STD. It's actually scary how close we are alike in some ways. I too studied to be a "man of god" and went through the hell that was celibacy Boy did I make up for lost time though. Be Well...being diagnosed with cancer may be life altering...but it doesn't mean the end of life. To me it was a realization of my own mortality and a wake up call to cherish every moment with the ones I loved. I'm thankful for that, however a more subtle wake up call would have been appreciated, maybe not as effective though.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Andy and EricS C;mon guys, Time to vote for OCF. If you haven't read Megan's sticky post on the Cancer Fighter Awards, it's worth it. Then click on this link VOTE OCF We have less than one percent participation and we are getting our ass kicked by competitors. This is the last weekend to vote, so take some time 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: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | I voted last week; there were a few others listed at that time but not too many.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Up to 50 now. It really does just take a couple of minutes!
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Andy. welcome to the forum. Yes, being told you have cancer is a life altering statement. I am still trying to get back to some normalcy after that statement. You have come to a great site. Everyone here is wonderful and full of wonderful advice and encouragment.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 |
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:)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Yes, thank you and Angelia also. Now if I can just get the other 99% off their duffs, maybe OCF can pull ahead this last week. 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Leslie
Thank you. It's only 53 now but I can only hope that everyone is waiting until after their Sunday morning paper and coffee to go vote 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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Andy, your radiation experience is going to get worse and keep on that way until two-three weeks after the last treatment, so brace yourself for it. Eat as much as you can while you can still taste and swallow food.
On this forum, we came up with a phrase called "New Normal" to describe life after cancer treatments and all the side effects.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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