Hi, Pat and Walt, I am so glad to hear Pat is reading the board also! It gives you a two way street to communicate on. Be forwarned that the "infamous" Eribtux rash will probably get worse. Things we kept on hand were Head and Shoulders Shampoo[regular] for shower time, Calmoseptine ointment or Clindamycin Phosphate gel. Try to get Pat's Chemo Doc engaged ahead about how to deal with the rash so you have things on hand at home. Pat, you need to watch for any changes in your toenails or fingernails. Hopefully you won't have alot of the rash, but it's good to be prepared. How many Erbitux txs are you getting? Good luck with the radiation phase, we'll all be pulling for you both. Amy in the Oz

davidcpa.... while you don't work for the company you are likely the biggest advocate for them in the US. How about channeling some of that energy into trying to get them to be supporters of OCF? We could put their product and web link up on our products for patients part of the web site if they found value in our shared desire to help patients.... we sure could use another sponsor!! If you accept this challenge, you have my permission to speak on behalf of OCF, or to after first contact and interest, bring me into the conversations.

That's a great idea, and one that will hopefully come to fruitition. It took us [out here in the Ozarks] a full MONTH of trial and failure to locate a supplier for Nutren and VHC. It would be a tremendous resourse for the people on this website to be able to order it here.[one caution, the Apria nutritionist I finally was able to order from was trained to NOT recommend VHC for peg tubes]There would need to be some good supporting info on how to choose which product for your needs. Amy in the Oz.

I haven't asked the nutrionist about using VHC in the PEG, but it does seem to be a little slower going in than Jevity. (this is gravity feeding)
Amy...I wonder why that Apria nutritionist was trained NOT to recommend VHC for PEG feeding?????
That would be interesting to find out.
Maybe if I got out my magnifying glass and read the can, there might be some info on that.

Brian and all Significant Others,

I will see what I can accomplish. It certainly would be in their interest. The main problem is finding the right person to present our case to.

to anyone contemplating Nutren: my husband used it through his peg tube. He said that it was ironic that something that never passed his lips could still leave such a bad taste! He hated it! It was provided through our health insurance so he toughed it out. As bad as it was, it was a life saver as he didn't have any spare weight to lose. A word of caution about Apria--be careful when reordering supplies. They loaded us down with a ton and wouldn't take it back (our insurance had already been billed). I ended up donating it to a charity organization. The food bank wouldn't even take it because people didn't like it. yes--it tastes that bad.

to Walt and Pat: Keep that faith! It will help you through your toughest times. We have been going through some tough stuff ourselves and it has been such a great source of comfort. Hope is one of our greatest healing resources.

Our many thanks go to the kind folks we have heard from on this board. You continue to be a blessing and an inspiration.

I thought I'd give a brief report. This marks the end of our first week of radiation treatments. Five down and about thirty more to go. Also, this week we've got the third Erbitux treatment. Those are the big milestones.

As far as symptoms are concerned, I can report the following. First, Pat has seen the Erbitux rash since shortly after her second treatment. Now, with the third treatment we are seeing the rash mostly around her mouth and on the lower chin area. We saw the med-onc today and he ordered Elidel 1% cream and Doxycycline 100mg x two daily. He said these antibiotics would help with the rash.

When Pat gets her Erbitux infusions they give her Zofran via her IV and this is followed by Benedryl via IV. These pre-meds take about forty minutes. Once these are administered the Erbitux infusion is started which lasts for an hour. Following the Erbitux they watch her for an hour. This regimen was decided upon since Pat had so much trouble with the first infusion of Erbitux (which put her in the hospital for four days).

Each day for her radiation treatment she takes compazine an hour prior to the Amifostine injections with lots and lots of water. (They give her two shots and thus split the dosage - they say this is better tolerated.) So far we haven't seen any significant blood pressure drops or nausea associated with the Amifostine.

Each radiation treatment delivers 2.11 gy and the total treatment will be 70 gy. One thing we've noticed is that Pat is getting more tired each day. Prior to cancer, it was inconceivable that Pat would ever slow down enough to take a nap. Now it's become a daily occurence. Also, Pat has starting talking about her saliva becoming kind of "gummy". Her mouth is becoming dry and she's thirsty quite often. Also she says her mouth tastes "chalky". I know from reading here on this board as well as the other research I've done that all of these side effects are to be expected.

So, we've got the weekend to try to recharge the batteries in preparation for next week. I'm expecting that within the next couple of weeks we'll see considerably more side effects from the radiation and I'll have to feed Pat through her peg tube.

Speaking of peg tube feeding. We talked to our insurance company (Aetna) about having them cover liquid nutrition. After at least forty minutes on the phone we were told that"pre-authorization" was not required if the liquid nutrition was being self administered. (If the liquid nutrition was administered by home health personnel or as an in-patient in a hospital it would require pre-authorization.) Anyway, this was good news since we were told all we needed was a doctor's Rx and they would pay. We'll have to see of this is true. I'll let you know once we try this approach.

We've asked the med-onc for a Rx for the Carnation VHC as well as a Rx for the Jevity 1.5. This way we'll have both covered. We wouldn't have known about the Carnation VHC except for this message board and the med-onc seemed to think that the large calorie count of the Carnation was what Pat should be using. Our local CVS pharmacy can order it for around thirty bucks a case - a considerable savings to us since Aetna will pay for it.

As I'm sure so many of you know, it's hard to see the one you love so much have to endure the "treatment" for H&N cancer. Somehow, the term "treatment" sounds almost benign except when you come face to face with what the actual "treatment" really entails and you know it is anything but benign.

This awful disease only serves to draw Pat and I closer and we continue to give thanks each day for our many blessings. We'll continue to trust the Lord - no matter what.

Dear Walt and Pat- If your Ins company tries to give you ANY trouble about the feeding tube nutrition- just have your Doc write a letter stating that it is her ONLY real source of nutrition [to keep her alive] and there is virtually no way they can deny it. We learned this the hard way, but fought and won- all of John's peg tube nutrition was by a written script and athus paid for by our insurance.It sounds like you are doing a great job as a caregiver. Amy in the Oz

Hi Pat and Walt, I just finished rad and chemofor a very simimilar diag. It will be at the bottom of this post. Everyone here is very helpful. For me I had trouble balancing between constipation and diarhea as well. I am having more trouble now that I started taking the pain medicine. I just wanted to tell you this gets uncomfortable but you can do it. I had alot of people praying really hard for me day in and day out and it seemed to make the first half of this little journey quite bearable. Me and my family will add you to our prayer lists and be cheering you on from our home. :-) Lee

Well, we made it through another week of treatment. This week makes it 10 rounds of radiation and 4 rounds of Erbitux. Pat is hanging in there. She really is a strong and incredible woman. No wonder I love her so much.

In terms of symptoms the list is starting to grow now that we are a couple of weeks into radiation. The inside of her mouth is full of painful sores and just about anything harder than a noodle is painful to swallow. Her tongue is also becoming very painful and seems to bleed easily. (One of the things I want to get checked out this coming week is whether or not she may have thrush.) We got an Rx for the magic mouthwash this week and it does help. She's starting to get the infamous dry mouth but we've had very good results with the Biotene spray and the Biotene gel. They work quite well at this stage.

Also, we got in 6 cases of the Carnation VHC this week. Pat is drinking these more often now. They are very tasty (like a vanilla shake) when they are cold and they soothe her throat and mouth somewhat. She is very commited to trying to keep feeding herself as much as possible by mouth for as long as possible even if it's just something soft.

We've done a good job thus far in maintaining her weight. Normally, Pat is about 130 lbs. and when she weighs in each day she's been around 134. So far so good.

Also, this week Pat had a lot of energy and was not as fatigued as she was the first week. However, she's been getting up at night more frequently with dry mouth type symptoms.

One odd thing we've noticed is that late in the day, usually before bedtime, she will run a low grade fever. When I say low grade I mean in the vicinity of 99.5 to 99.9 range. Sometimes she'll take a tylenol while other times she'll try to get down a few more fluids. Lately she's been drinking gatorade and she can tolerate this better than just plain water.

Anyway, that's a short report. We're hanging in there, Trusting the Lord no matter what. Pat and I thank each of you for your kindness and prayers. Be assured you all are in our prayers as well. Take care and God bless and have a great week.

Walt