blc,

Tagging on to everything Amy Oz said, I would count on him being out of commission appx 6 weeks.

Well if you havent heard Indiana had one of the worst snow storms in a long time and we had to go to indy for Marvin to get his port in and his a appt for simulation(i think that is what it was called) We were lucky and went down Monday night and stayed at the hotel connected to the hospital. The main radiologist could not get in but the did his port and also the simulation and will have the doctor look it over for the treatment of rad. The resident doctor that saw us said he may have some nodes on his left side that look funny so they may treat both the left and right side with rad. He told us if they did that they would not be able to save his salvia glands. We will take the dry mouth and kill the cancer anyday. So we are now just waiting to here what our next step is. We had to spend another night in indy because they called a snow emergency in Lafayette. We finally got home today around 3.

blc,

I had rad to my entire neck below my chin and my docs never said I would loose my saliva all together. It's been 5 1/2 months post Tx and my Dry Mouth gets better every week. I'm to the point now where I actually enjoy eating again and it shows since my weight is increasing to where I am beginning to watch what I eat again. For a while I never thought I would say what I just said.

You may want to question that statement.

I also had dry mouth but after a year I am starting to get some saliva back. I had Amifostine/Ethiol but only completed half the series because I developed allergy to it.

You might also ask them about a dental/saliva stent to protect teeth and saliva:

Dental Stent at M.D. Anderson CC

Barb --

Ask what sort of radiation your husband will be receiving -- if he has IMRT they should be able to spare some of his salivary function, though it will certainly get bad before it gets better.

With amifostine (ask about this too), it can help preserve more salivary function, but it's a nasty drug to take. Some folks get through the whole treatment (like my husband) but usually not without a struggle, some have to stop part-way through but (per our radiation onc) even a half-course helps. Our RO, one of whose areas of expertise was salivary-sparing, told us that IMRT can preserve about 50% if the plan is configured to do this (this will depend of course on what areas have to be radiated), and amifostine can add about 10-15% to this.

My husband also had a BOT (and tonsillar) tumor, spread to two nodes, it was human papilloma virus positive as are a majority of cancers presenting at these sites. He received 33x tomoTherapy IMRT at Hopkins, both sides radiated, amifostine and also, carboplatin only -- this in summer '05. (His medical onc rarely uses Taxol as she has not found it to add much benefit and it can cause severe allergic reactions, plus peripheral neuropathy, in some patients.) He had a pre-existing hearing loss too, the reason for no cisplatin, and several tests post-treatment have shown no further damage so the carbo- was a good call. He has good salivary function, which is improved by taking the drug Evoxac 2x a day.

If your husband was a non-smoker, you might ask about HPV testing as this type of oral cancer appears to respond better to chemmoradiation and has a relatively low recurrence rate. The initial treatment would be the same but it does provide some optimism.

Gail