Well our first few appointments are over. We met Dr Hanna - rated one of the worlds best head and neck dr's the past few years. We LOVED him. Very nice, explained things well, took him time.
Basically she does have dermal metastases. He recommends no surgery as she would lose half of her face and he says the surgery would cause it to spread more (in a nutshell). He says it would be a very HARD surgery for her to endure, especially since she hasnt healed from the prior one.
We cand do radiation b/c shes already had it twice.

What he did suggest was that shes a good candidate for heavy drug therapy, not necessarily chemo. Assuming we found the right combo for her, he says she would never be cancer free but it will reduce the tumor(s) and their side effects, making her able to live it with for years to come.
So tomorrow we are meeting with a top medical oncologist and hes going to refer us to medical onc. he recommends back in NC. Basically he will authorize what he thinks she should be on an d the oncologist back home will administer it.
Once and while we would fly back to Anderson to check in with him.

Im not sure what to think of all this. I guess I should be happy he didnt say "theres nothing that can be done"..he thinks shed be good at the drug therapy. Ive never even heard of it before. Shes happy about not doing the surgery too..she says she doesnt want to live the rest of her life that like, and we're all gonna die anyway.
She thinks her miracle made its way into our lives today because I am officially one month since my last period! She wants me to go take a pregger test but its the last thing from my mind today!! I cant even wrap my head around that. She keeps saying its her will to live.
So we're still in Texas...hopefully we'll be going home Thursday. Doing a CT and PET scan tonight as well as more appointments tomorrow.

Thanks for posting about Freida's appointment. Im not familiar at all with what her doctors are suggesting. One thing that I am familiar with is that kind of surgery. Yes, the doctor is correct, its a very difficult surgery to get thru.

Just wanted to let you know I was thinking of you and your mom today and hoping for some positive answers. Im so glad she has found some help in Texas. Please dont forget to take some time to take care of yourself.

Like Christine, I know nothing about this sort of advanced drug therapy, but I am glad that you and your mom have found such an approachable (and knowledgeable) doctor.

A friend of mine with an aggressive breast cancer also was told by MDA docs what sort of drug mixture she should be given, and she also received the treatment from an MDA-referred MO near her home, several hundred miles from Houston. (In her case, surgery was possible, and that was done at MDA. It's been several years, and she's doing just fine.)

Ive been doing a lot of my own research on it today and have found there are a few targeted for SCC, particularly this one called cetuximab.
this site sums up what the drug therapies are http://www.cancer.gov/cancertopics/factsheet/Therapy/targeted

and here is a link to one targeted at SCC. ill ask the oncologist about this tomorrow and see if its something he knows about
http://www.cancer.gov/cancertopics/druginfo/cetuximab

Erbitux has been approved for head and neck cancers since 2006. It is not often used as a monotherapy. You could have found out about it right here on the OCF targeted therapies page. It is a targeted EGF antagonist, meaning that it interferes with a cancer cells ability to replicate, but it does not kill them. So it is used in conjunction with other therapies that do kill.

http://oralcancerfoundation.org/treatment/targeted_therapies.htm

New chemo therapies are all looking at the interruption of some cellular function, and this is just one of many coming down the pike. The hope is that the systemic poisons that we currently use, that are so damaging to other non cancerous parts of our bodies, can be reduced or eliminated in the future.

MDACC was my personal cancer alma mater, and I cannot say enough good things about the docs there and the level of their knowledge. I would be totally comfortable following any recommendations that came from them.

I often feel that the majority of reports on "new" or "targeted" drugs for oral cancer should be like on late night TV infomercials: accompanied by a fast speech or scroll bye even faster in small print: "individual results will vary, these results are not typical"
I was super excited about Erbitux aka Cetuximab aka IMC-C225 after reading all the glowing reports. I made jokes about getting "martha Stewart" cancer treatment (she went to jail over lying about inside tips on selling her Erbitux stock). I had a wicked rash which supposedly meant great progress. Alas, it didn't really work for me and they switched over to the old platinum drug family the second time around
I really hope Erbitux works for your mom. My understanding is that they are just now discovering that Erbitux works very well on some oral cancer patients but not at all on others. Unfortunately they have not yet devised a test to screen out which patient is which. Good luck
Charm

[quote=Charm2017]I often feel that the majority of reports on "new" or "targeted" drugs for oral cancer should be like on late night TV infomercials: accompanied by a fast speech or scroll bye even faster in small print: "individual results will vary, these results are not typical"
I was super excited about Erbitux aka Cetuximab aka IMC-C225 after reading all the glowing reports. I made jokes about getting "martha Stewart" cancer treatment (she went to jail over lying about inside tips on selling her Erbitux stock). I had a wicked rash which supposedly meant great progress.
Charm [/quote]

well that's all very cute and funny - glad you can joke about it, but in our case, its her ONLY OPTION to live. she cant have surgery or radiation, which im sure you did, so youre able to joke about it.
your post sounds like a slap in the face. "let me crack on this drug therapy and then wish her good luck at the end"

Emily, have you and your mother in my prayers... hope all goes well today!

Dodie

Cancer is stressful. Hope you feel better soon. You can shoot the messenger all you want ,but it won't make Erbitux a magic bullet. As a cancer survivor, I find a sense of humor is essential in dealing with people who do not have cancer yet who have apparently lost theirs.
Charm

I never said the dr recommended Erbitux to us. When I did some looking around online, I found that drug so I mentioned it here.

Today in our meeting he did not even mention that one when discussing what she'll be on. Ill spare the details incase you know it all about that too. since its such an awful drug, she must be seeing a better dr than you did - since they put you on it and all.
isnt that a bitch? thats funny!

anyway im done here. thanks for the kind words