Hey, everyone. Hope this note finds you in good health!

I'm a Throat Cancer Stage 3 patient who just finished chemo and radiation at MD Anderson. I think I received very good treatment but wish I had asked more questions. I'm struggling to get back into my normal life and am paranoid about my next set of SCANS that will happen in December. Can someone give it to me straight?

1. Is Stage 3 considered found "early"?
2. Has anyone had experience at Mission Hospital in Mission Viejo. I'm thinking about using a Doctor from there going forward.
3. I'm having trouble sleeping and don't want to take any meds. Any recommendations?

Welcome to OCF John.

Congrats on finishing your treatments. Glad you have found OCF for some help going forward. Radiation and chemo can be rough to go thru and healing can take a while. Its not always an easy recovery with one small step at a time.

Sorry, no info about that particular hospital. Sleeping is something I havent done very well since I became sick. I do sometimes need to rely on prescription sleeping pills called trazadone.

As far as staging goes, its staged 1 thru 4 with 4 being the worst, there is no stage 5. There are many much more qualified people here than myself who understand staging beter than I do. Hopefully they can answer your staginj question.

Again, welcome and feel free to post questions/concerns.

Welcome aboard John. Your life will be changed but not your thoughts. Don't let anyone give you Ambien for sleep. Hell, I walked in my sleep from it and could have broken my neck. I called and told the Dr and was told that I should have been told about the side affects.When you live in a split entry and find the shirt you went to bed wearing by the front door, something is wrong. LOL I drink milk before bedtime, it helps some but not that much. I need a good 16 hr nap one day to catch up. Good luck and face OC with determination. You will win.

Here is information on staging from the Oral Cancer Foundation website. You'll find a lot of other useful information there as well.

If you are on the message boards and a question you want to research comes to mind, the gold "Search" link at the bottom of each page (in the dark area) takes you directly to the search page for the main OCF site.

John,

Don't even concern yourself with your staging. It won't matter what stage you are if your cancer comes back or it never comes back. Just concentrate on your recovery and be thankful your Tx is over.

We all feared the first few post Tx scans and that's perfectly normal. Thankfully the large percentage of them come back "unremarkable" but don't be overly concerned if the first one or two still shows "some areas that can not be excluded" as there may be some areas of inflammation from the radiation. Usually they resolve themselves by the next scan.

Listen to your docs. If they say don't be concerned, then don't. Not saying it's easy but it will be easier on you if you can.

Can't really answer your sleeping pill problem but I was never one to take pills so if you don't want to then try to work through it. Try getting yourself really really tired and see if you can fall asleep naturally. You can bet that your mind is probably working overtime in the background with everything you've been through. Try to congratulate yourself and feel proud at what you have accomplished.

Hang in there, it gets better every day.

For follow ups I would check our Bill Amstrong at UCI in Orange. He has been on the best doctors in the US two years in a row, and is a well known head and neck cancer guy. I've used him for follow up work for about 4 years after MDACC;

Staging at this point is not iportant to you. It was to the doctors that treatment planned you, but that is history.

Let's what would be non med mechanisms for getting to sleep, warm milk,counting sheep, sensory depravation rooms, Don't be a puss... we all take meds to sleep. Given what you've been through taking Ambien or something is no big deal. Jim's experience with it is not the norm. Or some other benzodiazepam, but their durations are longer than 8 hours.

I'm in OC. If you need to talk give me a call.

John

I can only address your first question this way: Stage III is earlier than Stage IV. David and Brian are right that staging was then, this is now. I echo the caution that PET/CT scans in particular come with worrisome legal disclaimers by the radiologist that cancer cannot be totally excluded whenever there is as spike in the sugar uptake. That's why my first test was just an MRI six weeks after TX. Both my Petscans in May and last week had bright yellow spots in the mouth. Long story short, I had to get the head of Nuclear Medicine at my CCC to personally read the last one in order to get the scary language dropped in this last one. Just a heads up not to worry if there is junk about SUV and FDG uptake sprinkled in the report. Instead rely upon your follow up team's clinical exams.

John congratulations on completing your treatment.

I will echo Brian about the Ambien. I was introduced to it while in the hospital recovering from my surgery and although I use it very infrequently now, I have never had any poor reaction to it. Within 10-20 minutes I am sound asleep and have a very restful sleep.

Jerry

Ever since radiation, I have had trouble getting to sleep (I used to be able to sleep anytime, anywhere, which was useful in the military).

I tried Ambien ("The Hammer", according to my GP) and it didn't work. I tried a number of things singly and none worked. What IS working for me now is a cocktail of:

Ibprofen (for wrist nerve pain)

Trazodone (prescription old anti-depressant that has drowsy side effect)

Melatonin (hormone your body produces when it's time to sleep)

Benedryl (anti-histamine, with drowsy side effect)

I read until I notice the effects and then go to sleep.

Antihistamines have always been used off label for helping people get to sleep. Look at all the over the counter sleep aid pills, and they are all from this group. If you have xerostomia though, be careful with this because it will aggravate your dry mouth throat etc.