I spoke to an Oncologist with Duke again last afternoon and he reminds me how much success he is having with Erbitux.

I am so torn between IMRT or Erbitux, it seems cruel that I can't have both.

I may consult with someone at Johns Hopkins since they not only have an IMRT compatable (EGFR) Inhibitor study, but they are actually using Tomo Therapy, which I think is even better!

HI, Michael. John also has the tingly thingy and twitches in arms and legs. It started after the 3rd week of rad and is maybe even a little worse now[Rad ended 7-8-05] He lived with it for a while, but finally started taking a 1\2 a strong pain pill to be able to sleep at night. His surgeon also says it will go away at some point. Hope you are getting to spend some time on your deck. Amy

Thanks Amy...

It is SO nice to be home! The high here today was 62, and we watched the 100 + all over the US.

My parents are up and we all had a nice glass of wine of the new deck watching the firey ball of the sunset.

I am starting Loratadine (10 mg) and it seems to be helping (maybe) he tingles!!

I'll let you know.

- Michael

Micael and
Seth, do you have brochures? When John is well and you are well, I think a trip to sunny but cold[62 degrees in July?] California would be in order. We would be paying guests, of course Amy

I agree, this is starting to sound like a good vacation destination for sometime in the future when we are all well--maybe next summer?

I hope you slept well last night Michael, after trying the new meds. Possibly a nice glass of wine with your loved ones and a beautiful sunset might help as well!

Hi Amy and Nellie:

You all are welcome anytime..!

We have lots of room, maybe we could have a "reunion" every once in a while (maybe in different parts of the country every year?)... Is there something like that already coordinated?

I slept better last night, and this morning seems to be a little better (tingles wise).

The new meds I got (OTC) seem to temper it a little.

I will certainly be asking on Monday at Stanford about this?! Also, I can "feel" something on the right tonsil bed (???) like itchy kinda, but swollen too maybe? I think it's just healing and normal, but I may have mentioned 2 of the Dr's I saw are concerned that it has already recurred or that the surgeon didn't get it all.

We'll see...

- Michael

The doctor got all of mine but 2%. This 2% were on the ligaments and he said if he removed it I might have never been able to speak above a whisper. The radiation is to get that percentage with no change in the voice.

Have you spoken with you surgeon? I know I would. Michael you have seen you say 40 doctors? I would be afraid of so many conflicting results. I hope you will start treatment soon and not wait any longer than is necessary for your healths sake.

Blessings to you,
Barb~

Hi Barb:

I have "started" treatment in the sense that I had the surgery on June 29th, and am just waiting to heal 100% to start radiation and chemo.

I plan to start radiation and chemo (possibly with Erbitux or other neoadjunctive treatments), within a couple of weeks.

First I have to have my dental work done.

Thanks for the good wishes!

- Michael