Sending positive vibes your way Michael. I hope your appt. went well this morning. Please post soon and let us know what you found out and what your take on MD Anderson was. You are in all our thoughts and prayers.

Love,
Jennifer

Hi everyone...

I'm back at my hotel now.

It went fine this morning...
Lot's and LOT'S of WAITING, but I am getting used to that as being part of this process.

Aesthetically, MDAnderson is mediocre at best...The campus is a huge cluster of tall buildings...but the shear size is still impressive.

I got there at 7:00 AM (5:00 AM on my internal clock!)

Michael, it is important that you feel good about the people. If the surroundings are clean, that is good enough. Glad they appreciated that you know what you are talking about. I was fortunate to have that kind of docs too. Makes a big difference. Thanks for the report.

yes, thanks for the report Michael. I was thinking about you and hoping you got some answers and a feeling of fondong somewhere where you could get treatment. Houston in July-September is certainly a place no one would choose to be because of the location or weather but you're going to be spending all your energy getting through your treatment and I don't think you'll be bothered by that too much.

It sounds like a great atmosphere. Good luck at Sloan Kettering.

Glad to hear that Michael. Sounds like you feel comfy with them. I remember how I just loved my Onco from the start. They took me to a room in the back of which was a large lounge chair. I sat in a regular chair and they said "Oh no hun, that chair is reserved for you my dear." I asked where the doc sat and they said in one of the folding chairs. hahahahahaha Then they asked if I would prefer coffee or tea and everything and everyone has been just as delightful ever since.

This aint no picnic but it sure helps when you get a little sympathy and understanding from your medical caretakers. I asked for a back rub one day and they gave me one! hahahahahahha I hope you find your experience as good as mine is.

Have a great day and bless you,
Barbara~

Hi Michael,

Remember me from the other board! Im so glad you came over here!

I have to say, reading through your ordeal has brought me to times of fear, sadness, excitement and happiness all in a matter of an hour or two.

Im so glad that all went well with your Surgery and that you are climbing that hill and giving it all youve got. When I was little my dad worked for a company called MATRIX, (long since defunct) and he used to take me to MD Anderson with im to install and Service the CCTV Video cameras and equipment at their facilities. I agree their buildings looked somewhat dated but it was an impressive campus nonetheless. I remember he put in an ID Badge system and we made some test badges with my picture on them. I think youll find the Texas hospitality quite relieving in your time of need. I have to say even back then when I was 9 or 10 years old, I had a fear of the place and wondered if Id ever end up their. I understood what it was about even at such a young age.

So I guess Ill cut to the chase. Remember I told you about my ENT appointment on the 28th? Well I went and was so scared sitting there in the lobby KNOWING he was going to look at the reddish area on my tonsillar pillar and we would certainly be getting a biopsy that day... but to my surprise after sticking the scope down my nose and looking at my vocal cords, inspecting my mouth thoroughly and looking in my ears and at my tonsils, even as big as they were, he did not seem one bit concerned about any of it. And he was a younger guy that was impressed with my knowledge of terms like "tonsillar pillar" hehe... and came well recommended by friends and doctors.

Well for a while I was happy, but particularly tonight the fear has come back from a few things you mentioned.

For the past few weeks, even before the appointment, Ive noticed occasional pain and soreness in my neck muscles on the right side. It has lessened somewhat lately but sometimes its uncomfortable. It feels like it goes all the way down into my upper right chest and I fear it is Lymph nodes enlarging

In addition to that Ive had ringing in both ears, but particularly occasional ringing in the RIGHT ear, sometimes I get headaches at the right side back of my head, and now when I clench my jaw on the right side I hear a "rushing" type noise in my ear, kind of like white noise. I dont hear this on the left side. My right ear also feels congested and I feel like I am losing hearing out of that ear. Also if I open my mouth real wide I feel a discomfort sensation in the back right of my throat that seems to travel to my ear a little.

My jaw is also tender and if I press hard on it its a little uncomfortable.

So I guess at this point Im going to reschedule and get my tonsillar pillar biopsied since its still clearly red in some types of light compared to the other side (in direct bright light it looks similar to the other side). My tonsils are still big but he said not to bother them if they arent causing me too much pain or difficulty, but today I had some hoarseness again. Remember, Im 22! I have to say, if I do get up the guts to have that pillar biopsied, and it comes back clear, thats IT. It is what it is at that point and it can have me if it wants, I cant allow myself to be tormented over my health anymore. In one way or another health worries have eaten up over 1.5 years of my young life already.

You are such an inspiration Michael. I dont know whats going to happen to me over the next few weeks, but I only hope I can have the same resolve you have shown my friend...

Here for you,
Ian.

P.S. Theres a song I want you to listen to if you have a way to download it, if not just shoot me a message Ill get it to you. It's a song by Mark Knopfler called The Trawlerman's Song. Its all about picking up and moving on again (in this case a Shrimp Trawler boat that is being fixed up to go out again). Music helps me through alot of things... this song was really good when I heard it.

Hi Michael,
I've been on vacation but your surgery and recovery have not been out of my mind. Glad your surgery went well and are now going to the very best for further treatment options. While I know nothing of Houston, I'm not certain that 61st and 1st in mid July (Sloan)except for the many restaurants in the neighborhood, isn't any better than Houston, weatherwise. I wouldn't let the weather determine where I go. On the other hand, if these centers can set up your treatment so you can have it in CA and have your dog and friends, without jeopardizing the outcome, I would go for it. Just make certain that the treatment will be equivalent.

Are they recommending IMRT, I can't remember.

Take care,
Eileen

Hi all!

I FINALLY got to NYC today! It was an 11 hour flight! 7 of them were spent on the tarmac at Atlanta Airport. Weather kept us grounded for hours, but I finally got here after changing planes three times and even airlines once.

It's 12:30 midnight here and I have my appt at 10:00 am tomorrow.

It's good to be back in New York, I've always had a warm spot in my soul for this town.

I'll be meeting the team tomorrow and if they are on par or better than MDAnderson this may be my first choice...One can't help but feel alive in the energy here.

I still have the tingles and it's a big annoyance. To check on that, on the surgery results, healing, etc. I am meeting with the Stanford team on Monday.

I want my incisions checked over, and ask them about the tingles and headaches I've been having.

Houston was refreshing in their "team approach" and what I keep saying is how much humility they all seemed to have despite their tremendous rankings.

It is quite amazing to see almost an entire mid-rise dedicated to the art and science of HEAD & NECK cancer treatments, I doubt Sloan will be as extensive.

I'll let you all know...Thank you for the positive thoughts, prayers, love and good energy!!!

Ian, I've been following your other posts on both boards, and I have to repeat my earlier recommendation that you consider asking for some anti-anxiety meds to help medigate the symptoms that might not have physical cause.

And, even if it is something serious, you will be better equiped emotionally if things are tempered to a more manageable level.

Have you contacted the ENT about your concerns? Maybe you should write a quick email or fax outlining the items you did here, just to make sure he doesn't dismiss you prematurely...Dr's are more careful when things are in writting (paper trail / liabilities, etc).

Eileen, yes, everyone I have seen to date is only considering IMRT, although I am still sold on TomoTherapy, but you'll see under my other post in "Currently in Tx", "Makeing a decision (again)..." there are a limited # of these out there.

MDAnderson said it is basically a marketing name, like the difference between 2 high performance sports cars, but I tend to disagree since Tomo takes a simultaneous CT scan at the start of EACH radiation session and automatically adjusts...

Then again, maybe I should skip radiation (just kdding! Joanna)

Hi Michael --

Good luck at Sloan, Dr. Pfister is great -- they are very organized there as well re coordinated care. Sloan is currently #1 (by a hair) over Anderson for cancer, Hopkins still #1 by a lot on Otolarynology, #3 on cancer.

I think Hopkins is the only one of these three centers with tomo on-line -- I will be getting that myself - but not sure.

You will find out that Sloan does not routinely do neck dissections, and then only post-treatment. It is quite interesting (and a bit unsettling) that there remains so much difference of opinion amongst the top people as to the best approach. As someone told me recently, treatment for HNC is as much a art as a science...

Good luck, Barry Cooper

Hi Barry.

thanks for the feedback.

I think you will be getting excellent treatment at Hopkins if thats your choice (if I recall correctly).

I spent the entire day at Sloan today.

They are nice enough. Very NY feeling. (Scafolding all around, construction going on everywhere, not cosmetically oriented).

But, that's part of the NY charm I seem to like, the raw, nitty gritty reality that separates NY from the sterile, plastic Orange County where I am from.

The clinic itself is not on the scale of MDAnderson. They certainly have a dedicated team of Head & Neck staff, but not the size or scope of Anderson.

I ended up waiting over 3.5 hours for the first Dr!!!!! I really think that kind of delay is unprofessional and unacceptable, but I kept telling myself I am there to save my life, what's a few hours delay, plus they DID squeeze me in last minute as a favor, so no biggie.

Dr Pfister was fine. Very professional. I'd say more conservative in his prognosis and presentation that many other Dr's I've seen...He just very matter of factly said, "...well, we see a lot of your type of cancer, and I'd say you have an even chance of long turn survival.." (in other words 50 / 50)...I am SO SICK of hearing 50 / 50 !!!!!!!!!!!!!!!!!!!!

Makes me think of rolling the dice, and if the # is even I'm dead, and if it's odd I live. Quite upsetting.

Anyway, they offered me the study also (for Erbitux) of which I am very committed to trying.

They discussed things ad nauseum, and I left for lunch thinking that Sloan wasn't right for me.

I just had this feeling from everyone that this was more of a "job" than a "passion". Several people (not all!) at Anderson I am sure this is a passion for them.

Then, I met Dr, Nancy Lee, the H&N Radiation Oncologist. She's AMAZING! By far, the best Dr of all the 40 to 50 I've met during this ordeal.

She was careful, professional, yet friendly and down to earth...She had fun with all the stories of the different Dr's I've seen and made me feel like she would take good care of me. She went over all the expected side effects and said she can almost guarantee me that she will save my salivary function, for sure post radiation.

She said she is having 90% plus success rate!!! with SCC H&N...

I was feeling like maybe NY would be best afterall...

Then the bad news...

The Erbitux trial excludes IMRT radiation!!!

I can't believe it, but it does.

I asked her what I should do, and she said, well...what did Anderson offer, I said the same study with IMRT. She said "No way...it can't be with IMRT"...I argued with her that surely they would have disclosed this important fact to me.

Turns out, I studied the informed consent forms, the study guidlines and everything. Nothing mentions exclusion of IMRT.

So we paged the Research Nurse.

Turns out the Anderson study ALSO excludes IMRT for use with Erbitux!

What's going on?!?!

First of all, why didn't Anderson tell me this VERY important change? I had to learn about it from Sloan?

2nd, why would they have this limitation when IMRT is vastly superior in so many ways..?

3rd, is there any way around this..?

Okay, so that's the latest.

I'm heading home (to Mendocino) tomorrow AM. It will be good to sleep in my own bed again.

Monday, I meet with a surgeon from Stanford, I want him to check my incisions, etc make sure all is ok.

More than one Dr has looked at the tonsil bed and said that it looks like Dr Fee didn't get all the cancer!!??!!??

I called Stanford to find out who the Dental Oncologist is and they said to just go to my local dentist!?

I need to get my two remaining wisdom teeth pulled immediately (problably under General), so that I can start the two week clock countdown to my simulation regardless of where I decide to get treatment.

So, does anyone here think the promise of Erbitux is great enough to outweigh the benefit of IMRT.

Thanks!!!!!!