Great news on the second opinion. Will pray the insurance company says yes.
Can't help on the trach issue.
Will watch for news tomorrow.
Thinking of and praying for you guys!!
Kathy

The trach needs to be removed and cleaned out. Do you have a visiting nurse that comes to your home or does he go to get checked at least weekly? When I had my trach the nurses in the hospital were supposed to be cleaning it daily but it wasnt done. When my ENT came to check on me he had a fit and cleaned it himself. By getting it cleaned out Don should also be suctioned out. Boy would I hate having that done but I always felt so much better once it was finished.

Here is a list of NCI cancer centers. There are some top notch facilities in Philadelphia (Fox Chase and Kimmel Center are NCI). Please take some time to check out the list. Im not familiar with the facility you mentioned or if they are a NCI CCC but I have seen their ads on TV. There are some different groups out there which will pay for air fare and places to stay that will be either very reduced of free. Off the top of my head I cant remember but maybe someone else here would. For soem reason an organization called "wings" seems to stick out in my mind for free airfare.

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

Thank you Kathy and Christine! I take the inner canal out twice daily and clean it. Do you mean you were told to take the whole trach out? I also suction him out every couple of hours or he coughs it up himself.

Hi Callie, so pleased you are getting your head around this.
Do not take the whole trache tube out, this would present a huge danger of then losing Dons airway by not being able to reinsert the tube. You are doing the right thing by cleaning the inner. That's all that needs doing. Are you able to suction Dons mouth and throat for him? This should help if he complains of too much mucous. I think the presence of the tube will also cause pressure and be uncomfortable for him,maybe that's what he is feeling coupled with the presence of the tumour.
I am praying that your insurance co. Will cover things for you. Please get this 2nd opinion as quickly as you can. I certainly hope Don will go with the surgery. It gives him a chance of life and a chance is better than none. As I have said, Kris is doing well - though I am scared to say that incase I jinx him.
Thinking of you all and praying,
Tammy

I've heard of cc of America... They are private cancer hospitals I believe. Though a second opinion never hurt. As for the mucous I remember mine being very mucousy I only had it in a few days - it may have to do with the whole healing process etc.. His body's way of dealing with the trauma - I believe once he adapts to it it and heals a bit it will clear up a bit, and tamvonk was right don't remove the trache ever - just the cannula, and do the suctioning (which I have to say I hated immensely when I had it done to me) mind you the nurses were rather violent with the suction and I'm sure one of them scraped a layer of skin off the inside of my bronchae one day with the damn thing! But aside from that I think it's just a waiting game, one of my schools has a severely disfigured little girl there - she was either born with a missing jaw or had to have it removed. She has a permanent trache and has to be suctioned fairly frequently - it may just be normal. Hugs - good luck with the second opinion.

Callie --

See this thread about Cancer Treatment Centers of America from three years ago. One thing I noticed in looking at the CTCA website this morning is that it has only one otolaryngology (ear-nose-throat, or ENT) specialist on staff in all of its hospitals. I'd consider that a red flag.

While UAB, where your husband has been treated, is very highly regarded (it's part of the National Comprehensive Cancer Network, the alliance of 21 top cancer centers that devises the state-of-the-art treatment protocols published each year), I understand your desire for a second opinion -- just get it from somewhere equally as reputable, with a dedicated head and neck cancer clinic that see hundreds of cases or more each year. (Note that UAB CCC has five ENT specialists on staff.) The top institutions in the U.S., as others have mentioned, include M.D. Anderson in Houston, Memorial Sloan-Kettering in New York City (both of which are specialist cancer hospitals) and Johns Hopkins in Baltimore. Closer to home for you, a number of OCFers have been treated at Emory in Atlanta.

I wish you all the best.

Here is the link to Johns Hopkins

http://www.hopkinsmedicine.org/kimmel_cancer_center/types_cancer/head_neck_oral%20cancers.html

Click on "out of state patients"

Praying for you guys!

Thank you guys! I was mainly going there so his family could be of more help. But he keeps complaining of being short of breath and we're both afraid it's the tumor. We talked this morning and we're sticking with UAB and doing the surgery. The earliest they can do it is August7!

Just FYI -- several OCFers have been treated at the University of Pennsylvania Abramson Cancer Center or Fox Chase Cancer Center, both in/near Phila. and both very highly regarded.

Callie - August 7th sounds like a long ways off. Maybe you could ask if they can move it a little closer? Or let you know if there is a cancellation in their surgery schedule? I had surgery (non emergency) recently and they called me when they had a cancellation so I could have it sooner. It doesn't hurt to ask for what you want/need. Praying for everything to go the very best way possible!