Dear friends,

I am being a little presumptious that we are all friends.

I also must admit I am a little nervous introducing myself due to a bias I personally have. I was not a smoker. In fact I am and have been very involved in tobacco control issues on the local, state, and federal levels.

I'm trying to get over the why me issue on a personal basis, and I don't mean to offend anyone who used tobacco. I just personally hate the tobacco companies and their marketing tactics. They have hurt a lot of people. I guess it is ironic that I am dealing with oral cancer.


About a year ago I developed a secondary tongue cancer as a result of a immunisuppressed state. I origionally had Non-Hodgkins lymphoma and after two rounds of chemo underwent a bone marrow transplant a little over three years ago. Long story short, I barely survived the BMT and was in ICU for weeks and totally paralyzed when I awoke. Rehab took over a year.

Then when things just seemed to be getting better the tongue thing. I have had three surgeries to remove tumors. The last was a reconstruction using skin from the arm. Then another tumor. I underwent radiation and am about 6 weeks out from an 8 week course of radiation. I still have a nodule in my tongue that is kind of bothersome. The doctors say that it would be atypical for it to be cancerous, and that it is most likely scar tissue etc. Still having mucousitis problems, etc, and have been eating using TPN through a PICC line. Will be getting a PEG or GI tube soon.

Having a PET scan in a few weeks that will hopefully give me a better clue as to my long term prognosis.

Quite afraid obviously that the cancer is still there and that I might lose my tongue all together. I talk fairly well which has been a big surprise to everyone. I just would like to enjoy food again through the mouth.

I am currently on disability and not sure when or if I will ever work again full time.

To make matters even worse, I recently lost a friend to tongue cancer. He was a few years older (37) but he had no history of cancer or tobacco use.

Anyway, been feeling very alone and just needed to know who else is out there facing some of the same questions or issues?

Hope all of you continue to find peace in your recovery and find joy in every moment you have in life. Survival is a bitch, but it beats the alternative.

As a companion in the no tobacco risk factors club, I hope you will take the time to review the HPV material on the main body of the site which may give you some possilbe answers. As someone with your background in law, non profits and activism, you may be a unique source of ideas and an alternate perspective. I am out of town at a cancer conference till Monday but I would like to begin a dialog along these lines with you if you are interested.

Hello Marc,
Sorry to hear about your trials with the big "C". (also sorry about the near miss with the attorney pun)

I have a friend that was going through non-
Hodgkins Lymphoma treatments at the same time as I found out about my SCC. Happily I am able to let you know that he and I are both doing fine. I'll hope, with you, that your PET comes out great.