Well, I said you would find a lot of info here. You are well armed for the battle now if it comes. If it turns out that Dave does have cancer, by all means get him on this board so he can see that others have successfully fought the disease. Besides, Having another David on the forum would further our plans for world David domination, lol.

I lost my dad to pancreatic cancer too so I think it is affecting my initial response as well.
Our goal today is to get an appt with someone from Sloan. He did the MRI today so in the next few days we should have the start of what we are dealing with. And I would like that info imparted by a calm person.
That cloudy feeling is certainly there. I do know how important attitude is. I talk to Dave about the responses here and it helps both of us. Right now,I do best with blabbing and he does best with distraction. One thing I know we do wonderfully is function as a team.
And that this place is such a good place. How did people do it before the internet???

This is the best place to come and read plus make sure you post. It occupies your mind to read about others with the same disease. Good luck.

It really does help to come here. I think it will be a little easier when Dave is comfortable with me talking to people. While I respect his right on when to talk to folks(and really right now we have nothing to say...) I will do better when I can talk!!!
Just a quick question. His mouth is pretty sore. It was tolerable till the biopsy now it's worse. Is that common? What seems to help with that besides pain killers(he doesn't like taking them). anything for in the mouth? They gave him lidocaine but it's only so-so in terms of helping.

Several people have praised something called "Magic Mouthwash". Type it in the search box to see what they say about it.

If you have trouble getting started at Sloan contact me, one of OCF science advisory board members is high on the staff there.

Brian, THANK YOU. What a generous offer. Tomorrow, Dave will be speaking to a someone there who we hope knows the two Drs we were recommended to. He has worked at Sloan for a long time so the probability of being familiar with them is good. If he is unable to help,we will take you up on that offer pronto.
Dave called the ENT guy to find out when the biopsy would be in. The MD had his nurse call who was fairly cold and said she "had no idea." (Are you guys getting the idea we're not happy with this place?).
Anyway, it reaffirmed the importance of having a bright, caring, in the know person to speak to us with the facts.
Are we allowed to ask about specific recommendations or does the board prefer to stay away from that kind of stuff. Just wondering how people felt about Sloan in general that have used them.

I'm always saying how time goes too fast but these days have been long!!!
going to research magic mouth wash now...

Hi,

I, too am new here. I had a biopsy 12/16/09 and was told 12/23 that it was squamous cell cancer. Actually, 2 weeks before the biopsy, my bone marrow doctor told me it looked like squamous cells.

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

I should be starting in about 2 weeks, 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 today. I was glad that I had read a little about that beforehand, or it could've been a lot more scarey.

Marytwicesurvivor

Survivied CML 6/93 with a Bone Marrow Transplant
diagnosed invasive SSC of right aveolar ridge 12/09
Right posterior maxillary paletectomy with obturator placed 1/21/09
Temporary Obturator 1/28/10
Home 1/31/2010

Myles Magic Mouthwash is a prescription swish and spit that numbs your mouth for around 20 minutes or so. I have used it the last 2 years due to problems in my mouth.

Mary,

Sory you had to join us but you are in the right place. You might want to start your own thread. Since you are in treatment now you can go to that forum and start a new thread.

I'm in Michigan also and had my treatment to the soft palet. no surgery, just rad.

If you have any questions feel free and fire away. We are here for you.

Kelly