Jul 31, 2011 - 8:38 pm
I am really learning a lot on this terrific website. In late January of this year I found out I had cancer. Primary is the base of tongue Stage 2. Metastisized to lymph nodes. I found a lump the size of a walnut at the top of my neck near my jawbone. That was found to be cancer, but not lymphoma. A PET scan was done to see where the cancer was coming from. My ENT thought the tonsil or tongue. The cancer in the lymph nodes was Stage 4a. I had surgery, 33 radiation treatments (6 1/2 wks) and once a week Erbitux for 7 weeks. 37 lymph nodes were removed (left side of neck) and 5 had cancer. My cancer is positive for HPV 16.
I had my first PET scan since treatment ended on July 28, 2011 and no cancer was found.
I have had lymphedema in the neck area since radiation that has now moved into the left side of my face. I am seeing a physical therapist trained in dealing with lymphedema. A facial compression mask is being custom made for my face to wear at night. Looks like a ski mask. Cut out eyes, nose, and mouth and covers the whole head and face with velcro in the back.
On the positive side, although I did lose all sense of taste my taste is coming back slowly but surely and I would say it is about 75% of normal. So I have truly been blessed. Eating is possible and takes a very, very long time due to loss of saliva and my tongue not working like it used to but it is getting stronger and more able to control movement of the food to my throat. If not for applesauce, I would not be able to take pills and vitamins. Lots of facial, tongue, neck exercises to do.
Again, I love this site, what a great, brave bunch of people we cancer survivors are!!
Linda July 31, 2011