charm2017

charm2017's Activity Feed

• charm2017 posted Happy Chinese New Year in the group Happy Chinese New Year
  “I hope that this new year of the Dragon finds my fellow base of tongue cancer survivors well. Although I still need a feeding tube and have a speech impediment, Life is good.    I'm going to switch to a low profile button in the next two months when my current tube needs to be replaced.   It is a little disappointing to see how little traffic this section of Livestrong gets, especially since it is such a good resource and website.    As I mentioned, Livestrong has profiled the founder of a on line support forum and information web site :  Brian Hill of the Oral Cancer Foundation.    It gets at least 10  new messages and posts every day for those of you who need a more active forum . http://oralcancersupport.org/forums/ A recent study has shown that the survival rates for base of tongue cancer increased dramatically the last twenty years and it's up to 50% for stage IV patients like myself. We Base of Tongue survivors still have more issues with swallowing, speech, and surgical complications than other oral cancer patients though. Again, a Happy new Year to you all Charm”

• charm2017 posted Top Ten People Oral Cancer patients need in the group Top Ten People Oral Cancer patients need
  “Here is a list compiled from articles on the Oral Cancer Foundation's web site.    Top Ten People Oral Cancer Patients Need   Surgeon (usually an ENT) Radiation Oncologist (RO) Chemotherapy Oncologist (MO) Dental Specialist (Dentist or Prosthodontist) Nutritionist Physical Therapist Speech Therapist Caregiver Support group (such as OCF Forum or Livestrong) Nurses (hospital and visiting)”

• charm2017 posted HPV as major cause of base of tongue cancer in the group HPV as major cause of base of tongue cancer
  “Hi I've been fighting base of tongue cancer for 3 years now.   I was diagnosed back in August 2007 with Stage IV SCC BOT, T3N2MO.   I had 40 IMRT radiation treatments ( 72 GY) and 8 chemotherapy of Erbitux.    I was ecstatic when it looked like the cancer was gone.   Within the year however, right after the best Thanksgiving ever, my ENT found a lump under my tongue.   The cancer had come back and this time I needed major surgery .  I had half my tongue cut out at the base and free flap put in with skin from my wrist.   Worse, the pathology report showed perineural involvement so it looked like the cancer would come back a third time.   I was lucky that my Comprehensive Cancer Center at Georgetown Hospital could give me radiation again using Cyberknife (25 GY) and did 3 more chemo this time with Carboplatin.   Unfortunately now I need a feeding tube for the rest of my life.  Especially frustrating since I had gone the entire first TX of radiation and chemo without a PEG tube.  I just found this group thru a google search.    In reading the posts as well as the article on liverstrong on tongue cancer, I did not see  the major medical discovery about base of tongue cancer and most of the other oral cancers : that the HPV  (not to be confused with HIV or AIDS) virus , esp type 16, the same virus that causes cervical cancer is an independent cause of BOT cancer.   I know that it was really a comfort to me to find out why I got a "smokers or drinkers' disease when I was a health and exercise nut.   Sad to say, with HPV, we are seeing more and more young people get BOT when it used to be primarily old people like me (I was 60 when diagnosed) I usually post a lot on a internet support forum just for oral cancer patients which has over 6000 members, the Oral Cancer Foundation forum.   Plus I read the feeding tube tips from the Oley Foundation.    I've added LiveStrong to my bookmarks and wish all my fellow Base of tongue cancer survivors the very best”