Hi all,

If you or someone you care about has been diagnosed with oral cancer and you would be willing to talk about your experiences publicly, please let me know.

I am looking for patient and caregiver stories that can illuminate the facts and statistics of oral cancer.

Right now I am working on a women's health pitch and would really like to speak with those of you women who were diagnosed with the disease yet had none of the typical risk factors, i.e., tobacco or alcohol use.

My e-mail is in my profile, but you can also respond to this topic.

If you have any questions for me, let me know!

Thanks,
Keri Kramer

Goodness, I was on vacation when this went up and don't fit the profile they are looking for. Come on ladies, let's get this person some stories. When the media comes looking for us, we need to respond.

Take care,
Eileen

am not a lady but this old ugly tired guy will tell it all .the good bad and ugly.the one and only one dr that was honest with my wife and i and the rest that just lied and are doing so now as we speek.
thanks
paul in va

I'm 44 and the caregiver to my 48 year old husband who is a non-smoker and very light drinker (about 1 or 2 drinks per month). I don't think we fit your current profile. However, if there is anything we can do to help, please let me know.

hi,
I told myself not to come here today and make a fool of myself again ,but at times self dont listen. I dont type well but i try and i have done everythine i said i would do. I am tired and really down no real reasion i dont think.One of mr webbs staff said that they may visit here, i hope they do.
paul

hi,

I am a caregiver to my husband who (although not a woman) was misdiagnosed because he did not fit "the profile" given that he doesn't smoke, drinks very little, and is not a young male. His oral cancer is caused by HPV 16.

Sophie

Hi. I am a caregiver to my mother. As you can see from my signature, she is 60 years old and NEVER smoked a cigarette - not even to try, and in all honesty may have had 6 drinks per YEAR. The only alcoholic drink she ever really liked was her own homemade eggnog (which is amazing). Last summer (2006) my mother started having trouble opening her jaw. The oral surgeon decided by November that he was going to try a surgery to stretch the muscle in her jaw. It was a painful surgery and did not help one bit. She started losing weight when she could not open her jaw and wound up losing a total of 95 lbs. from last summer until May 22 of this year, when she was finally hospitalized. Throughout this ordeal her general practioner was actually happy that she was losing so much weight (she started out a bit over 200 lbs) and told her that nothing was wrong, keep up the good work, etc. Can you believe that!?!? Anyway, the story continues... my mom kept going to doctors - her normal doctors and new doctors - just trying to get someone to listen. Finally, in early May a new ENT ordered an MRI. Guess what - her insurance did not want to cover it. The final straw was when I took her in May for a tooth extraction and cried in the oral surgeon's office. He sent her to the ER later that day. It is all so insane. One of the first symptoms listed on the Johns Hopkins website for this type of cancer is the stiffening or inability to open the jaw. How any doctor - let alone at least 6 of them - let this happen is beyond me. So, no, you do not need to smoke, drink or do anything else to have this happen to you. It is just awful. My mother was the hardest worker I have ever known and just wanted to spend her free time gardening. Right now she is basically bedridden and I just hope and pray every day that her treatments worked.

Keri

I am more then willing to tell my story ,,I am a 35 year old female ho meets non of the standard risk factors ...what would you like to know !

Hi everyone,

I am sorry it took me a little while to check back in with this thread. Just to clarify, I'm not a reporter but a PR person working on behalf of OCF. I thought it would be helpful to talk with people who have personal experience with oral cancer so that I would have a better understanding of the disease--and also so I would know folks to call on if a reporter wants a "personal story."

If you're interested in chatting with me, please shoot me an e-mail and we can set up a time for me to call you (or we can just chat over e-mail too).

Hi, Keri, sorry, but I am confused as to what you are looking for. Your original post seems to solicit stories from women who have cancer, this time you are asking for people with personal experience of cancer- is that only patients ? and or caregivers? Please clarify. Amy in the Ozarks

Keri -I was also a little confused as to whether I was what you were looking for. I am a caregiver to my son who also did not fit the profile. I would be glad to help if needed. Please just email anytime.

Hi all,

Oops, sorry for all this confusion I have caused.

When I first started this thread, I was interested in talking with women because Brian and I were working on a pitch to a television show about women who have oral cancer but had none of the usual risk factors.

Now, that pitch is done but I am still interested in hearing from people who have battled oral cancer or have cared for those with oral cancer. But it doesn't just have to be women, or people without the typical risk factors. It just has to be anyone who would be interested/comfortable sharing their story.

I should also note that I work full time apart from the work I do for OCF, so some weeks I am not fast on the draw. So, if you don't hear from me quickly, just bear that in mind.

Thanks--and I do appreciate you all helping me learn the ropes around here.

Keri,

You can contact me when it's convenient for you. You have my story, so whenever you have the time, I'll make time for you.

Jerry

Keri, part one of my story can be found here: http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/14/t/000018.html and part two in in progress.

If I can be of assistance, I stand at the ready.

Bill

Keri, you have my permission to use any part of my Caretaker Blog that might be useful. Jam [Amy in the Ozarks]

Keri -- You can contact me at any time -- be happy to share my experience.

Keri, you can also contact me if you would want to hear my story, I was diagnosed with tongue cancer at age 44...Carol

Keri, I am 1 month past surgery. I had my surgery at Ohio State University James Cancer Center. I had a triple endoscopy, partial glossectomy andleft selection neck dissection. Dr removed 8 nodes. I have just ok'ed joining a study at Ohio State that will last up to 5 yrs to try something that I take 4 times a day for who knows how long. I will be seen by the person in charge when I go for regular Dr visits. My next appt is Oct 15th. I would be more than glad to assist you in any way I can. The cancer is gone for now and the study is for the often reoccurence of OC and see if this might cure a lot of 2nd time around. I am clear now but also have barretts esophagus. My Dr for my 3 month scopes is the one who found the OC. He told me this morning that the pathology report from my last scope shows I have a problem in my esophagus again. Jim

I would LOVE to tell my story you can go to www.inthistogether.blog.com and read my story. If you have any questions you may reach me by email.

Hope to hear from you.