Hello all,
I finally have a plan---outlined below--although the primary is the lung, it's the 'jaw problems' they're targetting---but it still isn't really 'oral cancer' is it??
Facts:
1. It's highly aggressive non small cell lung cancer which is the primary and has spread to 'eating' my jaw bone.
2. It's inoperable and incurable.
BUT---It's treatable.
3. Treatment with chemo can prolong my life by several years---for 30% of people it does---so what's to say I won't be one of the 30%???? Positive Thinking!

I'm having what's called a 'GEMCARBO' chemo regimen.
4 cycles of 3weeks per cycle.

Week 1--Carboplatin plus gemcitabine one day
Week 2--The gemcit stuff only as a 'top up'
Week 3--Rest week--possible 'review'
Cycle repeated 3 more times.
With each cycle I shall also have an injection to strengthen the bone--my jawbone is being 'eaten away'--AARGGHH!

It'll be done at the day oncology unit at Castle Hill and I've got nurse's names/phone numbers/out of hours phone numbers etc., plus a 'diary' type thing which lists everything to be entered for every treatment.
I shall have bloods taken every week, may need transfusions if cell count goes too low and must avoid infection if possible.

The SERIOUSLY good news is that the drugs are ones with the least side effects--hair is likely to thin, but unlikely to fall out, may get nauseous, but unlikely to have frequent/prolonged vomitting---so my quality of life should still be not to bad whilst I give 'the treatment' a go!

There are no guarantees of course--I could wind up a bleeding/vomitting/hairless/near-death mess, but that isn't being mooted as being on the cards any time soon!

First treatment next Thursday, 21st
Thank you all for being there for me this far!
Brenda

Brenda,

Your game plan sounds positive and I hope you will have as few side effects from the drugs as my husband has had with his weekly cisplatin. Keep the faith and keep us updated as to your progress.

All the best,
Elaine

I took Carboplatin and didn't have many side effects so hopefully you won't either. My hair didn't thin much at all. Good luck with it all.

Elaine and Jordan---thanks for your posts and take care! You're obviously in same 'oops, only now, where do I go what do I do' as I am--love to you both!
Brenda x

Brenda

Of course you can stay here! We all help each other here. Many people visit other forums. You would benefit from 2 forums.

And you are absolutely correct on the % game. Most of us discard it here as all it brings is more unneaded worry and fear.

I sent you a thread on PDT Photodynamic Therapy. Ask about it. I know they are using it in Britain. There have been many positive results from it.(From what I've read so far)

Keep up your positive attitude. Throw away all the negative thoughts.

Wishing You Good Luck in TX. Petey

Good luck with your treatments Brenda. You are in my thoughts and there is no reason you can't be in that 30%.