#90756 02-26-2009 12:26 PM | Joined: Dec 2008 Posts: 11 Member | OP Member Joined: Dec 2008 Posts: 11 | Hello OCF forum contributors, As many of you know the only way people really hear about this helpful and inspiring site is through word of mouth, a card they saw with the web address or searching the web for answers. We want to continue spreading the advice and encouragement but we need the troops that are still going to treatment to help. I know that it may be difficult to think about helping others when you are fighting your own battles, but in some ways it may make you feel better - If you are going to treatment and have never seen our info card describing the site and all the features, as well as how to navigate to this forum, let me know. We want to make it easy for the next patient that comes through looking for more information to find all of you here that have such valuable experience and information. Leaving this card at the radiation check in desk and other places in the hospital like social services will help the support staff there point them to us with little effort just by putting the cards out or giving them out to patients. - You don't have to volunteer for anything else - just bringing some cards along toleave with the hospital staff on your next visit. E-mail me at [email protected] if you want to take some in, or just respond to the thread. I will see that they get posted out to you the next day. Can't wait to hear from you!!!!! Brittany | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Britanny
I just sent you an email with home address and phone number. Please send me cards. It was not until 4 months AFTER finishing radiation and chemo that I stumbled across OCF. Most of the web sites out there are either bogus or predatory or both! It would have made a major difference if I had been able to log on during those long lonely months of no one understanding how different this oral cancer is from prostate or breast cancer. Perhaps I would have even gotten a PEG instead of "being tough."
While I am sad that I am back in treatment due to recurrence, I am glad to spread the word. Life is to short, especially now, to waste on "what if"- but I can't help but think that if I had known what I do now, I could have caught my cancer before it was Stage IV and spread to lymph nodes. Plus I appreciate the subtitle on the recurrence forum about "being dealt a hard hand," as after one year OC clean MRIs and PET/CT's to be told that the radiation and chemo had failed, and the exact same cancer was back in the exact same places, and now they needed to cut out my tongue and split my jaw and mor , I was devastated. So let me help spread the word 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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Britanny
I sent you a PM last week about the buttons. I have tons of brochures to give out. I would love to wear a button. It would be my badge of courage that I would proudly wear. All my personal mailing info is on the PM or you may already have it from the PA state chapters.
Thank you ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | When I was diagnsed with OC something took me straight to this Computer and I started looking for an Oral Cancer site. I got lucky on the 2nd try and have been here bothering people since. I think it was 2 or 3 months before I had my 1st surgery. I sure does luv my nu home. LOL
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: 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 | Brittany - besides the cards, please send everyone the metal OCF lapel pin we give to doctor members. These people that reach out and help deserve to be on the same level. That goes for any of you regular posters here that have helped others. Besides the buttons that we have that get conversations going, I would be proud to have you wearing the OCF logo pin if you would like to. You guys are OCF family and part of the solution, many of you as much as the professional staffs that we work with.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Brian you are truly a leader by the definition in your signature. I appreciate everything that you have done and are doing. Thank you.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I received the cards and badges today, I must say you are fast Brittany . Thank you so much as I will get rid of some of them at my Oncologist and the head of the Cancer Unit this Tue, thw 10th. I like the new badges and the bright colors and I will have one of them on my jacket or shirt. Thanks for the service.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | I'm excited..I'm going to my dentist this Tuesday and they already want more brochures. They send them out in new patient packages. They know a lot of people in "the biz" so I'm anticipating needing a lot more!! This is fun!!!
I am so proud to be a part of this. I feel like this is something I was meant to do.
Last edited by suzanne98; 03-06-2009 07:32 PM.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Suzanne, you are a breath of fresh air. So upbeat and bubbly.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Thank you...you are so kind to say that.
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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