Good morning everyone - I want to start by saying continued thanks for all your support, patience, answers, well wishes, prayers, etc. I am much calmer today and we have had a very nice family weekend and Dan has felt wonderful - finally regaining strength and pain reduction from his surgeries. I have several questions for you guys - I have searched and read through numerous posts and haven't found exactly what I'm looking for. I apologize if it's there and you've already answered it :-), I just haven't gotten a chance to read everything yet. I have also put these on my list for the next doctor visit and some of them I realize now I should have asked at the first visit, but as you all know information/shock/stress overload is sometimes in effect at the docs' office and you think much more clear after the fact. Oh and sorry in advance if this is long.

Oh one comment I wanted to make regarding our treatment center, it is called Montgomery Cancer Center and it is a comprehensive care center... or at least I think so. They have everything there regarding treatment, labs, testing, scans, docs, NP's, counselors, dieticians, etc. They don't have private rooms for chemo, but have comofortable areas set up for patients and their families. If anyone is interested the website is: www.aollc.com. We have looked into clinical trials at other facilities and there are currently none that Dan fits the criteria for. We are only an hour away from UAB, one of the top medical schools in the country and we have talked with them and the standard care is the same here in Montgomery and all our docs were trained there and regularly consult with the docs there.

1) I noticed several of you did not have surgery before treatment. That was how our process started and my assumption that in our case with the location of the tumor being the parotid and the damage that would occur to the facial nerve (whether it turned out to be cacner or not) is what precipated our need for surgery. I guess that's not really a question I'm just trying to get it straight in my head and see if that "sounds correct".

2) I noticed several of you did not have ND at all and several had it later and several had it on one side then later on the other side... In our case the pre-op CT showed swelling in the nodes on the same side as the tumor so ENT said he had to get those nodes as well. He took the nodes from zone 2 & 3 and 3 of those nodes were vibily cancer and confirmed pathology. The RO told me they don't test every node they remove, but he would believe they would all be cacnerous. He also told us that he would be radiating Dan down to the collar bone because of node location. What I didn't ask at that time is why??? Does he suspect all the nodes are involved? Could that mean a second ND? And possibly some of this will be answered when we get our PET/CT Combo scan next week?

3) when RO described the radiation with the mask and how he would be targeting the areas, etc. I assumed IMRT. I asked him what type of radiation is this and he said "photon"??? After reading some posts I understand that once nodes are involved the only radiation you can do is traditional - so that wouldn't be IMRT, right? So does that mean it's not targeted? So why the need for the mask? Or maybe I can answer the mask question because he said that of course radiation is quite severe and if it was "off location" it could damage spinal cord, eyes, etc.

4) we meet with the chemo oncologist (I'll assume that's MO for medical oncologist?) on Tuesday and I have been reading lots of your posts regarding drugs and also looking out on the internet. I want to have enough understanding that when he recommends a specific course or treatment and drug I'll know what he means. If I understand correctly there are a few primary drugs used (cisplatin, carboplatin, oxaliplatin) and these in order of my list are strongest to weakest - in terms of fighting the cancer and side effects. I also think I understand that these are cytotoxics, which mean they don't help with metastases. Since we have metastates I'll assume we'll have a combo chemo? And in that case one of the other drugs would be Erbitux, taxol or paclitaxel??? I've also taken notes from your posts regarding other drugs administered the same time as the chemo drug - hydration, nasuea, amifostine... are there others?

5) I understand that chemo and rarely radiation can affect WBC count and that we have to be wary of infection. Can my husband not be around someone with something as minor as a cold - all the way to something like strep and beyond? And is that totally not around? Like will I have to send my toddler off to grandparents if he gets a runny nose? In theory I could try and keep them seperated, but since he is a toddler he of course won't understand why he can't see daddy when daddy is right here at home. And since we now have such a crazy schedule and worse to come with appointments I have to keep my son at his preschool and of course that's where the sick stuff comes from.

6) PEG and ports... Part of me would agree with RO that my husband has enough extra weight that we woould only put in a PEG if down the road we have a problem. But even if you have extra weight to "burn" you could still get severely dehydrated right? The one has nothing to do with the other, right? And the stronger you can be from nutrition will help the side efefcts, treatment effectiveness, etc. right? And I have read that having the PEG inserted mid-treatment is much worse than having it in pre-treatment. So why not just do it from a pro-active standpoint and if you don't need it great? Same thing with the port - since you're going to be getting stuck on a regular basis - why not take that one pain/irritation away from the get-go. I know in the shceme of things that an IV stick will be nothing compared to the other stuff, but it's maybe one of the few things we could control/prevent/help with. Another question is without the port do they leave the IV in your hand and tape it when you go home - then they can use it again the next day? My husband works with his hands alot (of course I realize he may not feel like that once this begins, but what if he hs a good day), and we have a very rambunctios curious son - so I'm wondering if that could be a problem.

7)The mask fitting will be next week - how bad is it? Is there anything I should tell Dan to have him prepared? To my knowledge and his too - he's not claustophobic, but I nkow sometimes you don't even know you are mildly claustrophobic until put in a situation like that.

8) I've been trying to put together a little regime or list of things for Dan to start doing now so we can be pro-active and try as best we can to have him ready to handle radiation. I've picked up post of these tips from you guys. Here's a few of the things I've seen:
*multi-vitamin (which RO also recommended)
*jaw & swallowing exercises (RO's nurse gave us a sheet); what is therabite?
*salagen med (since parotid removed RO said we would have real issue with saliva)- supposed to start it 3 days prior to radiation. RO said severe side effects week one then all fine. I've read in some posts that at humid times those of you that take it have more trouble - we live in an extremely humid environment...
*dental care, but I'll cover that in the next section because I have several questions
*should I buy a humidifier?
*should I ask for a prescription of Diflucan for him to go ahead and start taking?
*what else????? and am I just having wishful thinking or will this stuff make his road ahead easier?

9) Regarding dental issues - we saw our dentist and he said Dan has one tooth to be extracted and that he wanted to do one more cleaning and he gave us: Gel-Kam toothpaste by Colgate and Control RX toothpaste by OMNII. He said to start with the Gel-Kam and then go to the second. Any feedback/input here? Dan has started using this. The dentist also gave us PerioMed - mouthwash?? Is this for now - tooth strengthening or will this help with future mouthsores, etc.? The oral surgeon gave us Colgate PerioGard and I have the same question re: that. And if these are fluoride only - could you guys continue using them as your mouth got bad? And what is magic mouthwash I keep hearing about? Another question on dental is the tooth that Dan had to have extracted last week was abscessed to the bone - the bizarre thing was he had no idea/no symptoms (evidently drainage was to the bone and not building up - pressure/pain). It was found in the panoramic x-ray. When oral surgeon removed it he said pus shot out and it was pretty infected. He administered IV antibiotics that day and sent us home with oral srcip. He told me he doesn't think the extraction site will be healed by the start of radiation, but when he discussed this with our RO - RO said he couldn't wait - he needed to start radiation ASAP. Has anyone had an experience like that? Will it just be one of those "add insult to injury" kind of things in Dan's mouth?

10) Our treatment plan is progressing along, but we have not had our PET/CT Combo scan yet. RO told scheduler ASAP and she reports she is getting required pre-certification from Blue Cross. (the RO order was Wed). On Monday I'll start by calling the insurance company and I guess it's time for the "claws" to come out, because we need this info. Anyway - if the scan is not good and shows the cancer to be somewhere else I wonder if that will dramatically change our treatment plan???

11) I'm trying to get a "feel" for how much / if any work Dan will be able to do during this process and the first few months after treatment. I've read that some of you were able to continue working. Was that working from home, driving to work, was it office work??? We own a business of apartments and homes that we rent out (73 units), in a lower income section of town. Dan's typical day is hardware store for supplies, deliver to employees at whichever property they are working on that day, sometimes help with the particular project, knock on doors for collections, show apaprtments, sign leases. In his spare time he is welding, woodworking, building, etc. Throughout this he is constantly on the phone - hours per day because his cell phone is the business line. The only desk-work is lease signing and the only sit-down time is in his truck as he runs from one place to another. I don't believe he'll be able to continue and since this is our business we obviously depend on it for our livelihood and want to have some plans in place for when he's down. My hope is that worst case I could drive him to the property and he could spend an hour or so "checking on things" and knocking on doors for collections... Am I fooling myself? He thinks he'll be able to do MUCH more than I am thinking - is he fooling himself?

12) I am still searching for someone who has this particular type of cancer... Is anybody out there?

Again I'm sorry if this is so long and if there is "posting protocol or etiquette" related to this, please share becaue I'm really new to this type of thing. Or if this wasn't the right section, etc.

For those of you with answeres/opinions/feedback/comments/etc. if you'll just put the item/question # that you are responding to in your post I think it will make things easier to understand and follow.

THANKS!!!!!!!!!!