Looking for people who understand

mosbutler said:

My husband had base of tongue cancer squamous cell and is post chemo and radition 6 weeks tomorrow. He also cannot eat. He has a feeding tube. The Rad. Onc. feels he should be eating now, but he is still very sore on the right side of his mouth. When he does try to eat everything tastes bitter.
Good luck with the MRI
Maureen

fallows said:

I finished radiation the first week of December. It is now the first week in February and I am still having trouble eating. I can eat pasta, noodles, pudding, eggs and other very soft foods. They put me back on steroids two weeks ago and that has helped with the swelling, sorness and made it a little easier to swallow. I still am using my stomach tube for supplement feedings, prosure, and mediations. It is going very, very slowly. Taste is slowly getting better, the radiologist has me takining zinc three time a day to expediete that.

oodeloo524 said:

Your story sounds almost exaclty like mine, except I'm 20 and have never smoked. In Nov. '03 I began complaining about my braces to my orthodontis. I thought that it was causing the lesion on my tongue which would cut open at least once a day, quite annoying and painful. He brushed it off for a few months. I went to see my regular doctor for a normal head cold and he saw my tongue after his nurse stabbed it with the thermometer (i almost cried it hurt so bad). He told me to tell my orthodontist that I needed ad oral surgeon. I first met with my oral surgeon in march of this year. He put me on three weeks of antibiotic and told me it was just an infection and would go away soon. Well, three weeks later it was still there so he took a biopsy to rule out cancer. The day before mothers day I called the oral surgeon because the "infection" had begun growing on top of my tongue and it was large and very painful. He called my house a few hours later to tell us he found something and needed me to come in that mon, the day before my 20th birthday. He told me that it was SCC and immediately referred me to the head surgeon in head and neck cancers at Sloan-Kettering. My appointment was for that weds. I met with him and he told me how serious this condition was and that the tumor was rather large for my age and the amount of time I had it. My surgery was scheduled for two weeks later. Inthose two weeks I did all my pretesting and admissions testing and tried to finish up the spring semester. I ended up having to take an absent for final grade and an incomplete. I finished my other classes though. I had 60% of my lateral tongue removed and had a bilateral neck dissection during which the doctor removed 28 lymph nodes on May 24. 25 from the left and 3 from the right. 3 on the left had cancer in them. One of the lymph nodes had a 1 inch mass that had burst the lymph node. The tumor in my tongue turned out to be about 3 inches by 1 inch. They made the flap using tissue from my wrist and replaced that tissue with a graft from my leg. I now have a feckle on my tongue, lol I was unablt to eat and had a feeding tube down my nose also. The doctors told me that would take a while to be understandable when I speak but my speech went almost back to where it had been before the surgery right away and has been improving since. They also told me I would probably not be able to play my flute again, but I'm already playing like I did before the cancer. I showed them, lol. Also I was back on solid foods, cause i cheated on my diet a little, within two weeks out of the hospital. On this coming monday I will be starting my radiation and chemo. I will be getting 7 weeks of hyperfractionated IMRT radiaiton (lower dose twice a day, meaning more dose per day) and 3 chemo treatments every 21 days (they will be using cysplatinum). I will also be receiving amifostine shots everyday. I had a feeding tube put in surgically yesterday June 14, feeling fine now just like I did too many crunches. After my radiaions and chemo traetments are done I will be doing 30 dives in an oxygen chamber for an hour a day. This is supposed to reverse the effects of radiaition on the jaw and teeth. I completely understand ad will soon understand your ordeal during your treatments as well. I would like to talk to you more. Maybeyou could instant messege me. I can always use new friends, especially those who were in my situaution and understand what I'm going through. My im is prncsaurora0820. I'm usually online in the evening between 5 and 10 but not everyday, it really depends on how I'm feeling and if I went out with friends. Thank you for posting your story for me to read, I was a little scared and still am but not as much about my treatments. Sorry my post is so long, I needed to talk.
~Steph~