Deb - no apologies on "hijacking" - I enjoy the little tangents that spin off :-)

Rick - nice to meet you here. I responded to your post on the Introduce Yourself forum.

Eileen - we are not at a major cancer center. There is a CCC (on the list) at UAB in Birmingham, about an hour and 1/2 from here. All of our docs were trained at the med school there. Our cancer center is large (50 bed chemo area), everything on site (pharmacy, dietician, social work, etc.) but it is not one of the "top spots" and our RO and MO are not head and neck specialists.

This process started for us with a initial dx from FNA and exam of a benign tumor. We found a local UAB ENT Surgeon with a great reputation for the surgery. During surgery he found "all the bad stuff". Things just moved on crazily from there. We did alot of research and talked to lots of people and came to the realization that the treatment protocol was going to be the same here. So we decided it would be better to stay here. We own a business that is our livelihood and Dan is the backbone of it. We also have 2 children (12 & 3). Sitting here now as Monday morning QB it's easy for me now to see why we should have "sucked it up" and gone to Birmingham. But we didn't so now I have to get my tx info, etc. here on the board. If, God forbid, this tx doesn't work or if he has a recurannce we will go initially to Birmingham and then possibly on to somewhere else from there. Our MO was in Clinical Trials at UAB and he is the clinical trials director here in Montgomery - he looked into this for us and currently there was not anything of benefit to Dan. I have made a friend online, but off-post who had salivary gland cancer - a little different type and stage than Dan, but salivary cancer. She is in Seattle and I believe treated at the Center there which is supposed to be top notch. Her doc told her no Salagen during tx because it would thinken the mucous too much. She has been taking it post tx, but not during. In Dan's case we need to weigh his choking and not sleeping vs dry mouth. So far he doesn't have a big problem with the dry mouth, but does with the mucous - so the Salagen goes. That may change as things evolve. I have talked with Dan at lenght re: the suction machine and the baking soda, etc. Even though I am quite a take-charge caregiver and person by nature - everything is still ultimately his decision and right now he does not want to do either...

Thanks guys for your continued support and information. This is such a wonderful place to be.

Rick,

Forget the healthy do good stuff, eat all the sinful fatty crap you dream about now while you can because it will be at least a year from now before you will probably enjoy those things again.

Michelle
I have not been on this site for a while, but with reading your posts I can certainly relate to what your husband has been through. I also have Salivary Gland cancer. I had a neck dissection, with lymph node, carotid artery , and facial nerve involvement.I followed up with chemo and IMRT radiation also.This all took place back in 2006. While recovering from effects of chemo and rad. A follow-up CT revealed mets to my lungs. I am on a watch and wait approach. I feel wonderful and do not have any symptoms. My onc. believes that within 6-8 months symptoms could start to appear. At that time he would reccommend treatment.
I have always been looking to speak with someone who has actually had a similar experience. You had mentioned a friend in Ca. that has Salivary Gland cancer also. What is her situation, if you don't mind me asking?
Stay strong in your care giving. My best to your husband. There are better days coming for him!!!!!!!!! Pam

Dear Pam

I have just read your post after I posted a private quick note to Michelle about her hubby's experience with Salivary Gland Cancer. I don't know if you have read my post recently in the re-occurence section. However, briefly my mum is suspected to have Salivary Gland Cancer. Her consultant said her needle biopsy results look quite suspicious. She's due an MRI Scan on the 15th April 08 so we will know more after that.

In the meantime, mum is in SO much pain and discomfort. She is just managing to control the pain after I took her to see our local GP who prescribed Oramorph, Voltarol and Paracetamol. However, no pain relief is helping her other symptoms. She says she also feels a burning sensation in the area of the supposed cancer and it feels like someone has opened her up and rubbed hot chilli spices there or like radiotherapy burning. She says feels creepy crawley sensation there too like there are insects crawling around inside under her skin. She worries that the cancer is spreading fast. The hard lump under her skin in the parotid gland does appear to be getting bigger.

I am SO worried.

I wanted to ask if you experienced similar symptoms?

Thanks

Kathleen.

Pam and Kathleen it is nice to hear from you both.

Pam - I sent you an e-mail because I couldn't get the PM feature to work.

Kathleen - I sent you a response to your PM to me.

In people's profiles they can turn on or off the ability of others to PM them. Pam's profile showed that she wanted to be notified by email if someone sent her a PM, but had the PM button turned off. I turned it on for her. ( Pam you can go back into your profile and turn both of these things off if your do not wish people to contact you)

Pam, I do not understand what your doctors are doing. They have confirmed that you have lung mets, and they are WAITING to provide you with treatment for them when actual symptoms occur? Isn't that allowing them to get bigger, more dangerous? I would want to have these dealt with soon, before they go to a state of involvement that they could not be managed.

You guys are all just so amazing. I think I would be having a nervous breakdwn without this site.

I just thought I would give yall an update on how he's doing. Dan has started complaining a lot more about the throat pain and asking for medicine on a more regular basis. However the Lortab is continuing to work, which is great because as far as pain meds go Lortab is weak. The mucous is also killing him - it is so thick that he has to actually throw-up sometimes to get it out. I

Get that nourishment and water in him every day. You need to start counting calories and ounces. Forget his weight. Get his skin reactions checked out ASAP. He has a LONG way to go and it will only get much much worse. His days will begin to slow down and eventually will become a crawl and everything can become magnified so it's best to stay on top of every minor detail that can become a problem later.

He needs PROTEIN and even though he is eating 3 meals a day, meat is probably one of things he is eating a lot less of so is getting less protein. Besides counting the calories, you need to count the amount of protein he is getting. I needed at least 80 grams, I'm certain he needs more. Check with dietician as to how many he needs. 8 oz. milk contains 8, add instant breakfast and it ups it to 16? (see box). 3/4 cup yogurt 8, 1 egg 7, 3oz meat, poultry or fish (size of deck of cards) 21, starches 3, veggies(1/2 cup) 2. The easiest way to get the protein and vitamins is to drink the Carnation VHC or Ensure Plus (13g) or Boost Plus. Maybe that will convince him to drink them.

It is good he is exercising because he does not want to lose muscle. Try a different brand of water if it is tasting metallic? What is he drinking it out of? Maybe a different conatiner? I lived on coffee as my water source, decaf, black no sugar sugar. No food value, but kept me hydrated. Ensure Plus was my only food for several weeks. So start counting both calories and Protein and water intake. He seems to be doing quite well so far.

Take care,
Eileen

Thanks Eileen and David - I will start counting today. I know what we had for breakfast so I'll just go back and figure it out. He only ate 1/3 of his so I'll figure all that in. I just need to make a chart.

We will see the RO tomorrow and I am anxious to see what he says about the skin reactions.