Met w/Research Oncologist today who revealed a couple of things we

R,

Most everyone here deals with the thought/fear of recurrence no matter what course of treatment we've had. I knew going in to my chemo radiation treatment that it was a one time shot. My attitude was to do everything I could now so there wouldn't be a recurrence later. I can't control if my cancer recurs or not. I pray that it doesn't and try to stay as positive as I can, but we all have dark days.

You are at one of the best facilties in the nation, have faith in your Drs and the treatment. Focus on making it through the treatment one day at a time. The future will bring what it brings.

Am I understanding correctly from your signature that your fiance still has ahead of him some kind of induction chemo and then the 7 weeks of rad/chemo combined that we all get? If so, they may be giving the grimmest part of the picture just to be clear about why all that is needed. It's not going to be easy, and, speaking for myself, I found the motivation to get through it from realizing what a nasty disease this is, and that I really wanted to fight it as hard as I could with all the weapons available.

It's almost like you have to become aware of the real risks of recurrence and death to give yourself the motivation to get through the fight. And then you at least know, if it does recur, that you did everything you could to fight it.

You're certainly at a great place for treatment, as Tim suggested, focus on getting through the treatment and recovery after. Beyond that, there's a certain amount that is beyond your control and that you have to just let go.

Nelie

Yes. C225 induction chemo was yesterday. Additional chemo (the old stuff, as he describes it) will follow, combined with radiation, over next 7 wks. Study documentation sites "Treatment Agents: C225 cisplatin docetaxel radiation". I guess that 3 kinds of chemo w/rad. (It's so frustrating not being there to ask.)

I agree 100% we should focus on the postitive & we're at one of the best very facility around. I try to help him remember too but, am being very careful because, since yesterday he's become so negative the anger & frustration shifts to me when I attempt to say much of anything postive.

Another surprise this morning left him shaking w/anger when the dentist told him radiation would effect the bones such that implants (which, since the very beginning, have been an almost illogical priority he's expressed to every doctor he's seen) are impossible and he'd even too sore for dentures until spring. When I gently inquired hether having that knowlegde would have effected any decisions he's made. . . . his anger turned to me.

Hopefully he'll work through this and get back into the postive mindset he's tried to maintain till now. However, it may be time for me to sit back, listen, and just be there for him.

Would still love some input on how those burst lymph nodes effect prognosis.

Thanks,
R-

R,
my very Dx was a 1-2 punch. The first ENT I saw scolded me for "waiting so (too) long to come in -that I had a very advanced SCC and to get my affairs in order). I am happy to tell you that I am a 4 year survivor now and doing quite well. I had chemoradiation only as my cancer was deemed "inoperable". The doctors always have to give you the worst case scenario.

The "burst lymph nodes" are a new one for me but consider this. Tumors release thousands of cancer cells into the blood everyday anyway and the immune system does a pretty good job of taking them out. the chemoradiation should take care of the rest. You should ask the doctors about that.

Nelie & Tim give excellent advice. You are at the best facility in the world. They have to prepare you for the battle ahead and make you aware that many of the nasty side effects are normal and not a sign of "impending death".

Also many of the people here are caregivers because many patients can't deal with "too much" knowledge. Many patients here have "worst case" scenario issues and it can be very scary to patients responding well to treatment.

Have him ask about meds for anxiety if he needs them.

All of us fear recurrence - it's part of the cancer adventure. It can be overwhelming very quicklly. There has been many success stories here with advanced stage patients - don't give up hope. Concentrate on getting through treatment each day and not what may or may not happen.