David,

Thank you for speaking with me! We have an appointment with MD Anderson on the 2nd of September to stay 3-5 days to begin with and longer if needed. Lois has decided this is the best route to take and I will be able to go with her and stay through her treatment. Hopefully she can get started right away.

Thanks to everyone who has taken the time to respond to all my questions.
Cheryl aka Brick

Brick,

That's great and you will be a great caregiver so now she will have the best of both. You have my number so don't hesitate to use it.

Brick...you certainly have good questions and seem to have a good handle on everything. Lois is lucky to have you in her corner..that's for sure!! I see you spoke with David and I'm sure he was a huge help to you..he is full of good information:)

I wish you luck on your journey and we are here to support you every step of the way. It's a crazy ride but the people you meet along the way are amazing. Most of them anyway!! We've all encountered that not so nice medical staff or spoke with the not so nice insurance "customer service" rep...lol but that gives us something to laugh about here.

Update on MD Anderson and the diagnosis.
What an amazing place. MD Anderson Cancer Center (MDACC) is a very organized group of people focused on the cure and treatment of so many different types of cancer. The Head and Neck group is amazing. We had been to 3 different doctors in Tulsa - none of which could say for sure where the primary cancer was after a needle biopsy, full excisional neck node biopsy, nose and throat scope, CT scan, PET scan. We went to one doctor at MD Anderson and he did a physical exam and within 30 seconds of looking at her tonsils - he said there is the tumor - in the right inferior tonsil! Over the next week we had a definite primary tonsil excisional biopsy, a full CT Scan, and a full body PET scan that showed no distant metastatic disease! In the first week we had exams by the ENT Surgeon, Medical Oncologist, Radiation Oncolcogist, Dental Oncologist team that all meet once a week to discuss the tests and treatment plan and agree on how to proceed. This week we have appointments with dental to get the mouth stent and flouride trays built, another appointment to do the radiation simulation. The radiation simulation will then be presented by our Radiation Oncologist to the entire group of 8 Radiation Oncologists and they must all agree that the simulation is targeting the proper areas before the mask can be built. In the mean time the Medical Oncologist has defined the chemotherapy plan to begin a week before radiation with a loading dose of Cetuximab Erbitux to enhance the radiation effectiveness. Then once a week during the 6.5 weeks of daily radiation treatment.

We have moved into an apartment fully furnished less than a mile from MDACC and have been eating everything in sight! The apartment is very nice and we found it by using the MDACC website list of housing.

We have a T2N2bM0 staging but the doctors are all very carefully saying look - the tumor is very small, with only right side metastatic nodes involved, does not appear to be on base of tongue and is probably HPV positive (they did a special biopsy to test for HPV) and is CURABLE!

In any case, both she and I are in 2 different medical studies. Both us are in Dr. Sturgis' study related to head and neck cancer (I as a control case and she as a primary - about eating habits). She is also in a special HPV study. I am in a melanoma study as a control. We both volunteered for any studies MDACC has going on.

I would highly recommend to anyone to come to MD Anderson to at least get a diagnosis from people who ALL they do is look at cancer and fight it every day of their lives - it is night and day compared to the doctors in Tulsa - who maybe see Head and Neck cancer once a week. We accomplished in just 30 minutes at MDACC what Tulsa doctors couldn't do in 2 months.

If not MDACC at least the closest CCC you can travel to for an appointment. We just called the 800 number and got an appointment within 1 week of calling. We saw the right doctor the first visit and he set up the whole team!

We would have never gotten here without this forum guiding me to the right place!
Thank you for building this place online!
Cheryl aka Brick

Cheryl --

That is the clearest explanation I have seen in my three years here of why it is so important to be evaluated at a comprehensive cancer center, where head and neck cancers are the only thing the doctors see and treatment determinations are made collaboratively by a team of medical personnel from a variety of specialties.

Cheryl - Great information on your status and MD Anderson. It's a whirlwind but you feel so much better with a good understanding of the road to follow. I don't believe anyone here on this forum ever dreamed they would end up with here with this type of cancer. I'll be praying for you and waiting for your updates. Good luck.

Bonnie

Brick,

That's so good that MDA is all that it's cracked up to be and that's great that you are doing your part to help in the cancer battle while you have nothing else to do as her caregiver. lol Great that she's eating everything in sight.

Are they recommending weekly Cisplatin?

Let me know about the HPV results.

If you have a chance to work with Dr. Rhonda Jacob in Dental Oncology, try to get in to see her, she has forgotten more than most know and is a great person pull of positive energy besides.

I too stayed at the very cheap apartments fully furnished with everything that you could need, which was the deal of the century. There is a daily shuttle bus from the apartments to the clinic and back (the parking fee there could send someone's child through college!)

You have got to take some free time to go see the butterfly museum not far from the hospital. I won't spoil the experience for you, but it is like nothing you've every seen.... not just a bunch of bugs on pins..... And the Bar-B-Que at a couple of places nearby is to die for. There is one where it is all family seating (meet lots of interesting strangers) on long benches, and everyone in town knows why you are there and people in town are genuinely friendly, gregarious, and empathetic. As my treatment progressed I was less about going out and eating and seeing the town, and more about sleeping, but my wife rented every movie a Blockbuster and watch three a day while taking care of me there.

If you feel like being a bit of a missionary, Meagan at OCF could send you some postcards to leave at the various nurses stations around head and neck that help patients find this forum. Patients before you have left them, but they are likely all gone by now. If you are interested call Megan at 949-723-4400 and she will send you a batch to leave behind.

Several of the MDACC docs are on the OCF science advisory board, and are huge supporters of OCF. I don't think you could be with a finer group of people, you are in good hands for sure.

David,

I don't know the difference between Cetuximab and Cisplatin. I do know that Cisplatin is more toxic and Cetuximab is not a toxin but is a protien enabler designed to help target and focus the radiation on growing cancer. Lois is only going to get Cetuximab. The reason given is that her tumors are small and only 2 nodes have been positively identified - all on the right side only - unilateral disease. The doctors also feel it is highly likely HPV positive but all have stated that the HPV result does not change their treatment recommendation. They do believe being HPV positive has a positive effect on the outcome of treatment but have no specific research to prove it - yet...

Is it possible to get both Cetuximab and Cisplatin plus radiation? Is this a more aggressive treatment? Is it only required when more nodes or bilateral involvememt or distant metastatic disease is present? I am worried that it could come back if the Cisplatin is not used. I know we are in good hands but it feels like insurance to use the best punch now while she has no symptoms or pain or side effects from the radiation. I need to trust the doctors but I want to know why they choose different treatments. And since I am not a doctor I don't know why.

Lois prefers not to ask many questions and I am trying not to ask any that upset her. I guess I just need to buck up and ask them anyway - right? She doesn't want to know statistics and I don't blame her because they can really cloud the mind.

The HPV test result should be back Monday or Tuesday and I will let you know which way it goes. Are there any questions I should ask about the typing of the HPV or anything else?

I will contact Meagan to get some brochures - there are none around the checkin area that I have found and I collected one of everything when we first arrived.

Kickin it in Houston! Going to go see some butterfly's today. Thanks to everyone for all the support!
Cheryl aka Brick

Brian,

She has been to two Dental Oncologists at MD Anderson (MDACC). The first one was Dr. Jack Martin to determine if any teeth needed to be removed before radiation started - thankfully he felt she could keep all her teeth. The second is Dr. Theresa Hofstede to have the stent and flouride trays made.

Dr. Anita Sabichi is her Medical Oncologist.
Dr. Erich Sturgis is her ENT.
Dr. Beth Beadle is her Radiation Oncologist.
Each of these Doctors have a group of fellows and interns and other doctors specializing in the field of head and neck cancer as well as peers in their practices. Lois has never been seen by less than 2 doctors in any appointment.

The apartment search was interesting indeed. We went to 6 different complexes and met with several people to see what they had. The range of cost was quite wide ($1000 a month difference)and the quality and size also varied quite a bit. The place we settled on is Braeswood Park run by a company called Reside EA and we couldn't be in a better place. The apartment is spotlessly clean. The furniture is very nice. My advice - make sure you look at all the options - make sure you are seeing the apartment you are going to rent (not a model) and make sure utilities are included. We got a 3 bedroom for a 2 bedroom price because they didn't have a 2 bedroom available. We have had a couple of minor fixit problems and they have jumped right on getting them fixed.

I will contact Meagan to get some brochures. Thanks for the butterfly suggestion - we are going today.

Cheryl aka Brick