Hello all. I have recently been diagnosed with oral cancer in the base of my tongue and has spread to lymph nodes in both sides of my neck but no farther.

I'm halfway through treatment, day 17 if 35 in the radiation treatment and 3 of 6 low dose Cisplatin treatments completed.

I've been lurking and reading for a few days and so far it seems my experience is relatively typical of others so far. The side effects are building and I find myself most interested in the long term implications of the treatment and will be as impatient as anyone else to taste good food again.

I feel fortunate to have found the site and appreciate the benefit of others experiences.

Welcome to OCF! Glad you found our site to help get you thru this.
I know treatments arent easy but with good nutrition and hydration it will be easier. Hang in there!

Welcome to the group. We are all here to support you and be your sounding board. Wishing you the best in your treatments. I have dodged the radiation and chemo bullet so far so I can't offer any input on it but wanted to welcome you. Others will be along shortly to share their experiences with treatment similar to yours. Again.....welcome! You have found a wonderful source of first hand information and support.

Alicia

Hello Allen:

Welcome to a new family, the oral cancer family. Yes, I know OCF really stands for Oral Cancer Foundation, and that is an important distinction and an important group to all of us. But the members are also just one really big family, brothers and sisters, aunts and uncles.

I used to say welcome to the forum, but that's way too sterile for a group this caring and supportive. People who not only listen, but actually know and understand what you are going through, what your needs and fears are and what has worked for them during this unwanted, unplanned roller coaster chapter in their lives.

Your situation is particularly important to me as I start radiation next week myself. You are already having treatment symptoms I have only read about.

So, don't be a stranger. Write when you can about what concerns you, because we all care.

Once again, welcome to the family.

Tony

llen,

Glad you found us. This site will do a great job of supplementing your doctors with great info and treatment and recovery issue tips.

It would be beneficial if you add a Signature Line like mine and others so that when you post you don't have to repeat yourself and we don't have to wonder as we do our replies.

I assume you tested positive for HPV?

Where are you being treated?

Any treatment issues or concerns yet?

Welcome Allen, glad to have you among us, but sorry you have the need.

Most of us have the effects of the radiation reach a peak about two weeks after the last treatment; but some of us are much less affected, so no one can really tell you how it will affect you.

That said, be especially vigilant in monitoring your finger tips and toes for signs of change. I was told to watch for "tingling" as in the feeling you get when circulation is lost and then restored, and I did.

I did not ascribe the "Pressure on my toes, as from a shoe too small in that area," to neuropathy; I actually thought it was due to shoes too small, as I had just purchased new gym shoes.

UH-uh, it was neuropathy; and it's permanent (and aggravating.)

Be especially vigilant with your hearing, hearing loss is a quite common side effect of nearly all chemo (I've had 5 varieties) and is also permanent.

Tell your MO as soon as you detect any change, he'll probably change to a less corrosive chemo agent and stop the loss.

Taste-loss is temporary, but it takes a bloody long time returning fully. Two folks I've met have said 5 years. I've found mine to be very slow returning.

Actually, it would be as accurate to say that "I've found mine to be very STRANGE in returning." (Or even simply, "...very STRANGE.") With me, it's varied highly, depending mostly on what the item I'm eating is. Steak, for example, tastes wonderful! For about the first three bites, then the flavor is all gone. Steak SAUCE, however, seems 100% and makes the by-now tasteless meat, palatable.

My case is different though, and I'm on my fourth spin around the dance floor (in 5 years) with Madame C, so my taste recovers some, new chemo arrives and adios taste; rinse and repeat. Fortunately, I'm done with chemo for a while, so the adventure of discovery continues.

Good luck you you, Allen. And don't fret about this stuff, the fear of the unknown is always at least an order of magnitude worse than the reality you encounter. Write that down, it will appear on the exam!

Bart