Hi, I am a tongue cancer survivor and I am glad to have found The Oral Cancer Foundation. I am glad to have found a place for those dealing with oral cancer. There is so much attention to other cancers and not many for those who suffer with oral cancer. I am a volunteer and committee member for the ACS Relay For Life. When I am feeling well, volunteering and helping others with cancer gives my life purpose. Thank you for having me.

Hi Paula, glad you're here. There are a lot of people who come here for advice and it's always good to have another voice of experience. Iknow that oral cancer gets completely overlooked at our local RFL. As a volunteer perhaps you could get Brian Hill to send you some hand outs.

Paula,

Welcome and as I told Laura, Gina will be in touch as soon as she can.

Paula, welcome to OCF! Its always nice to have another survivor join our forum.

The Oral Cancer Foundation is a very small nonprofit organization which depends on its volunteers and donations to stay running. They invest in things to help oral cancer patients thru studies, research, clinical trials along with running this website. There are also brochures printed that can be given to dental professionals. I always carry some with me to make sure all my doctors have them on hand. If you would like some brochures, call the OCF office at 949 646-8000. They are open PST 9:30-5 M-F

Welcome!

I feel I did not give enough info after reading your posts. I am a newbie, so I will do my best.

Diagnosed July 2009 at 43. Had Partial glosectomy. Six month later after PET scan another partial glosectomy January 2010 resulting in half my tongue removed. Numbness and no feeling on right side of tongue and mouth. Constant pain that does not let up and makes eating difficult. Many nasal and feeding tubes resulting in large weigh loss and constant battle to keep weight on. All the surgeries and meds caused the damage of the nerve the controls your stomach to contract resulting in severe gastropharisis and allergic to the only meds that help. Suffer from debilitating nausea and inject Zofran at least 4 times daily to be able to function. My last PEG got dislodged and nicked a blood vessel and my entire abdomen filled with blood and almost died. Spent 6 days in the hospital in September 2011. Currently my voice left 10 days ago and back at the Oncologist. Had a scope and biopsy and another PET on this coming Monday. Try to do all I can to educate others and volunteer when I am well enough. I try hard not to give in to the chronic illness and be as productive as I can. I work with new cancer patients and try to help them and give them through the initial diagnosis process. That is my story. Paula Foster

Paula thanks for adding some more info about your journey. Im right there with you with still using zofran. I have alot of nausea and end up spending a couple days a month on the couch or worse being woken up in the night sick as a dog. Its horrible so I sure feel for you having to be on zofran every day.

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Hi Paula,
Thanks for sharing your story. I'm so sorry it has been such a battle. I am amazed at your positive attitude toward life and helping others. It is people like you that keep people going, even when you are feeling ill yourself. Thank you for that!
Welcome to OCF. We battle together!!
Blessings,
Kathy

Welcome Paula! You're an inspiration!

David, I totally agree that Oral Cancer is overlooked at the RFL and that really bothers me. This is one of the reasons I am so glad that I found this organization. There was no one else I knew who was dealing with oral cancer. I would gladly pass out any hand outs that would educate.