Hi,

I, too am new here.

I am a Leukemia survivor, had a Bone Marrow Transplant in 1993. The problems I've had surrounding that were Graft (new bone marrow)vs. Host (me) The new immune system attached my mouth, eyes, and all other mucous membranes. The past almost 2 years, I had an unusual spot where a tooth had been in back of upper right mouth. The Bone Marrow Doctors set me up to see an Otorlarngologist at the same place, a major cancer center. In July an MRI showed OK, in the fall this area proceeded to get worse as I've been sick with upper respiratory problems.

By November, we agreed to get a biopsy quick .Actually, before the biopsy, my bone marrow doctor told me it looked like squamous cell carcinoma. I had a biopsy 12/16/09 and was told 12/23 that it was squamous cell cancer. I guess the appearance changed over the last couple of months. After results I did find this forum and read some information. After a CT scan, I was told 1/6/10 that I would need a right posterior maxillary paletectomy, and it was scheduled for 1/21/2010.

Wow, talk about fast. I did manage to get another opinion at another major center nearby, and it was the same conclusion.

Had the surgery, got interim obturator 1/28, got out of hospital 1/31/10 with a peg tube. A few days later the doctors told me that the pathology showed some tumor cells existed in the margins and I would need Chemo, 3 rounds of Cisplatin, one every 3 weeks as an inpatient for a day, 6 weeks of Radiation

I will be starting chemo & radiation tomorrow 2/22, so I imagine this is the best that I will be able to feel for a while. As I said, I am new here, so not sure if this is the right place to post, but wanted to get myself out there to those in the know. They fitted me with my mask 2 weeks ago. I was glad that I had read a little about that beforehand here, or it could've been a lot more scarey.

I'm not really hungry, but do try to drink fluids at least. I've tried to eat some things, but it's not easy. Also, my jaw is not able to open as wide as it should. I may need to get a "Dynasplint". Has anyone used this?

I also wish there had been a "head" that could've been shown to me seeing exactly what would be done, and how things would work after that. It would've been nice to know ahead of time of all the added costs, and a way to spread them out some.

Oh well, I guess I am anxious about tomorrow. I hope there are a lot better drugs for nausea than I had in 1993. I was the "puke queen"; I don't want that nickname again.

I'm looking forward to your knowledge & support.