I like the little smile icon...He is grinning, and his smile is not crocked like mine LOL!

Wow...Today my left neck is the size of a catalope! I am trying the "massage" technique, but any ideas are helpful.

Now, to the reason I "copied" my post from "Introduce Yourself..." to here.

I have to begin radiation (and/or chemo) soon and can go anywhere.

I am trying to decide between:

1) Memorial Sloan Kettering (NY)
2) UCSF (San Francisco)
3) MDAnderson (Houston)
4) City of Hope (LA)
5) UCLA (LA)
6) Hoag Cancer Center (Newport)

These are in the order of likely selection. Hoag is 15 minutes from our Laguna home which is why I am considering it, plus they brag about a HUGE survival rate for cancers in general, not too much experience with SCC (H&N) though.

LA is about an hour from our Laguna home.

SF is about 3 hours from our lodge in Mendocino.

Another consideration is that only 4, 5 & 6 have the new TomoTherapy which is what I am going to try to use.

http://www.tomotherapy.com/company/comp_customers.html

Also, Stanford has this new contraption...

http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ckHome.html

Also, the larger facilities seem to have many more clinical trials for which I may qualify.

Who knows!!??

We have made arrangements to be away from the resort for 6 to 8 weeks as needed, checking back as often as we can, both of us on weekends the first couple of weeks, then Seth alone a few times.

My folks live in the Laguna house, lot's a friends, family, support and familiarity (freeways, etc). Room for our dog (Zach the 100# black lab moose!), our room is there just like we left it 6 months ago, all very nice and comfortable.

BUT, I want to make the smartest decision for my long term survival, so if that mean's moving to a 2 star motel in 105 degree, 100% humidity HOUSTON for 2 months, let's do it!

Can you guys help me decide over the next couple of weeks?

I want to start to make plans now.

I have read all the reports about using a CCC or at least a CC. I know the statistics out there are hard to follow.

ANY advice or testimonials are appreciated!

Its really nice your partner is able to go with you if you go far from home. I didn't have that. I ended up getting my chemo and rad at the hospital 15 minutes from my house because I really couldn't see being in a hotel room somehwere for 7 weeks by myself, either in terms of cost or in terms of my mental health. There's a lot to be said for being treated at home. Especially the dog thing--my elderly dog was my sanity-saver at times.

Anyway, since Seth is going with you, I would go where you think you can get the best treatment.

Thanks Nelie...Where did you go? Were you happy with the quality of care?

I just left Stanford after my surgery there and would not go back unless I REALLY had to.

Thank you for your comments and feedback..I agree being with our lab would be nice, and I missed him so much with only 5 days in the hospital I can't imagine 2 months.

My parents brought him to the hospital a couple of times, and I walked down to see him in the parking garage...It was nice.

Of course, we COULD take him with us whereever we go...

Who knows..again thank you for your feedback.

Michael

Michael . . .


If humidity doesn't bother you too much and you are willing, I cannot recommend to the folk at Georgetown highly enough . . .The Lombardi Center is quietly reknowned for its head and neck work and the guys and techs and nurses are way beyond the pale in terms of humanity and compassion and friendliness.

Tim

the humidity would be nothing comparred to Houston in July/Aug...

Could you share any direct contacts there with me? Thanks!

Michael -- Check your hotmail email.

Tim

Michael, In some ways, I did go to a CCC. My local hospital (Cayuga medical Center) has formed a partnership with Roswell Park in Buffalo, which is a CCC, and my radiation oncologist is from Roswell Park--for now he is here three days a week and there the other two. They have the latest in quipment for IMRT radiation right here. That's the thing that made me decide it was OK to stay. But it was a hard decision.

When I was diagnosed they had JUST opened and there have been some issues with that--namely that, for example, they aren't set up to do clinical trials here yet (not really an issue for me) and the coordination between my rad oncologist and the other people on my "team" (ENT, medical oncologist, dentist) is not nearly as tight as it would be at a CCC. And none of these folks is specifically on a head and neck cancer team. As I understand the way Roswell Park is organized, the people that work on specific types of cnacers do not really include the rad. oncologists who are kind of separate and make their own decisions about radiation treatment in which every case is reviewed and a recommendation is voted on by all of the rad. oncologists on staff.

I got a second opinion from the head and neck group at Dana Farber in Boston because of this, and because the first rad. oncologist at the hosptial here (hired by Roswell Park folks just to run the faiclity here)was saying I didn't need rad (he later left--rumor has it was asked to leave because he was making wierd recommendations but that could just be rumor and that's when my current rad oncologist, who has been at Roswell Park for years, started practicing here three days a week) .

You might want to go to at least two places for opinions on what treatment would be best for you. I found out that even after that, the opinions from Roswell Park about what treatment I should have and the opinion from Dana Farber differed. D.F.'s was more aggressive (this is partly because I'm stage II and there's more gray areas there I think) and I ended up insisting that the facility ehre follow their recommendations.

And they did end up doing that here, although I wonder if they really did absolutely everything they could to keep my chemo treatments proceeding on time (which is important since they were only being done to amplify the effects of radiation, which did proceed more or less on time). I had a low white blood cell count that prevented the third chemo for so long that rad. was long over by the time it was high enough. I think there are proactive things they could have done to prevent that (such as that medicine they advertise on TV all the time that keeps up your WBC)but I am hoping that since the first two cehmos affected my blood so strongly, the two chemo treatments I got also did what they needed to to kill extra cancer cells.

One thing to be aware of is that the fancier types of radiation (IMRT) require a lot more lead time to program after they've done a CT scan to map your head and neck. Two weeks is standard based on what they said both at DF and here. If you need teeth pulled, they should be pulled before the mapping by a couple of weeks. So that's basically a four weeks delay between any teeth you need pulled and when rad can start. And timing is important. ideally there should be no more than 100 days between your surgery and the END of radiation (standard radiaiton time is 6-7 weeks). Mine was longer than that, unfortunately, because of those things--and that I didn;t get teeth pulled until I had gotten the second opinion, which took another couple of weeks. So you need to get opinions quickly.

Good luck with that. I got a lot of feedback and help from people during that time that was invaluable in getting the treatment I finally got. Lots of good advice and experience in here.

Nelie

Thank you for the GREAT post Nelie. I have printed it for future reference.

Thanks again....

- Michael

Tim:

I've gotten the email, and wanted to thank you on the board for your generous and graceful information...

You're a great guy!

- Michael

Hi Michael

Along with everything else, you'll need to see your dentist about preparing your teeth for the aftermath of your radiation treatment. Your dentist may want to start you on fluoride trays if it is likely that you will have a dry mouth and therefore be more susceptible to tooth decay.

Your doing so well, lots of love from Helen