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.

Hi Mary,

You are posting in the right forum for now.

Sorry that you have been through so much and have to go through more now. Any questions you might have regarding the surgery you had as well about obturators would be good to direct to Colleen whose screen name is August.

Go to her profile and send her an email or private message. She never had radiation or chemo, but knows a great deal about the surgery you have had and dealing with obturators.

Good luck tomorrow and through all of your treatment.

Mary,

wow, you are a survivor that's for sure...way to fight. Sounds like you've got a good medical team and things are rolling. Many have used dynasplint on here to help with trismus (trouble opening mouth) so you should be able to get some good feedback.

I'm sorry you had to find these forums, but you will find great, knowledgeable, caring people here and wonderful support.

Best wishes,

Eric

Hi Mary!

Sorry to hear about your battled with cancer. I had chemo 3 years ago and the drugs were really good at keeping it at bay for the most part. Emed was a godsend. I can ony imagine how hard it would have been to have these chemo treatments even 5 years ago when the drugs weren't as good.

Wishing you a full recovery. You sure have been through alot.

Kate

Hi Mary, I have had similar surgery, complete with obturator and radiation. Since I had clear margins I did not have to have chemo. I would be glad to answer any questions. I like you had wished they had explained more and were quicker with some of their recommendations. I was given a Therabite to use to excercise my mouth. I have to still use it and still can't open my mouth very good. Good luck with your journey. Feel free to send me a message to let me know how you are doing.

Sharon

Hi Mary, You came to the right place. I can tell by your poast that you are a strong woman. You will get through this. Any questions about rads and chemo ask away. I had 8 weeks of rads and 5 weeks of chemo. You can do it.

Mary, welcome to our family and the best for your treatment that begins today. You have had a rough go of it and must be a toughy . Keep us posted.

Thanks to everyone who has replied; I know I am in the right place here. Getting ready to go in for first chemo. Too bad they don't have "snow days" for these times, but then that would only delay the inevitable. I guess not knowing what to expect is part of the anxiety; I just need to get through it one day at a time.

Knowing there are others who have gone through everything and gotten through and are there for me is a great comfort.


Mary

Hi, Mary -

Good luck on your first day! I hope all goes well. I, too, had a maxillectomy/palatectomy, then chemo and radiation to clear up the perineural invasion. It was a challenge to get through, but it's been 6 months since I finished treatment and I have no residual effects of radiation or chemo. I have an obturator -- a more "permanent" one than the one they put in right after surgery -- and that remains a work in progress.

Please feel free to ask ANY questions you might have about the whole process -- chemo, radiation, obturator, anything that comes up! I'll be thinking about you as you embark on this next part of your journey.

Hi Mary.
Welcome to our little group, I'll be thinking of you today as you start your first day. It'll be fine, your a strong trooper!