Hello. My name is Walt. My wife's name is Pat. She is my sweetheart, soulmate, love of my life - the list goes on. Here's what happened to us.

We came down to Florida in early December 2006 to visit some of our kids. Between us we have five kids and four grandkids. Three of our kids and three of our grandkids live in Florida. And, as we've done for a few years we took an extended vacation so we could see them during the holidays and early new year.

Shortly after we arrived Pat mentioned a lump on the right side of her neck. It didn't hurt and she had no symptoms - no fever, aches, pains, etc. Since she wasn't feeling bad we decided to watch this lump for a couple of weeks and if it didn't improve we'd get it checked out.

About three weeks later (right after the new year) we went to a local General Practitioner who prescribed and antibiotic and said to come back in ten days. Ten days later the lump in her throat was unchanged and was actually somewhat larger. Next we were referred to a surgeon for a biopsy. He said this was an Ear/Nose?Throat issue and referred us to an ENT. The ENT order a CT scan to see if the lump was a salivary gland or a lymph node. At the time we first saw the ENT the lump in Pat's throat had grown to the size of a golfball. The CT scan showed it was an enlarged lymph node on the right side of her neck just below the ear. Next he did a needle aspiration biopsy. This came back as "inconclusive". Next he removed the lymph node. The result came back as a non small cell metastatic carcinoma. Next the ENT looked down her throat and found a squamous cell carcinoma about 2.5 cm at the base of the tongue on the right side.

Next we saw a Radiation Oncologist who said this wasstage 4a. (Actaul diagnosis is T1N2bMo)The Rad Onc said he wanted to do IMRT x 35 treatments over 7 weeks. We next saw the Medical Oncologist who said he wanted to do Erbitux once a week for seven weeks. Subsequent PET scan showed no further metastasis.

OK, fast forward. Pat had her first Erbitux induction last Monday. The treatment went fine but about four hours after we got back home she had a very severe headache which was followed by severe nausea and then vomiting. She was admitted to hospital the next morning with dehydration/fatigue, etc. Med Onc said he'd never seen a reaction like this before - go figure!! While in hospital they installed a PEG tube in preparation for radiation treatment. Pat had her second Erbitux treatment two days ago and it went fine - no issues, no side effects. We had the setup CT scan in preparation radiation today. Radiation starts next Monday.

Even though this is a long posting I've only given you the condensed version. But, I feel certain that many of you can relate from your own personal experience and you know all about the tears, the shock, the denial, etc.

Anyway, here it is mid March and we still haven't headed back up north to our home - so much for vacation huh? I'm not complaining because the kids are here and they are very helpful and supportive. It was meant to be that we discovered this here as opposed to back home.

So, that's my introduction. Pat and I are determined to trust the Lord no matter what. I just wish I could take this awful thing and bear it for her. We have a large number of folks praying for Pat and I and we can see the difference that makes. Anyway, hello to everyone. I'll keep you posted.

Hi Walt,
I'm sorry you, your wife and family are going through this. I am just starting the experience tomorrow when my husband (Kyle51-member name)goes in to have part of his tongue removed. They will be checking his lymph nodes as well. We are praying it has not moved there yet. I too wish I could take some of the fear away that my husband must be feeling. He read bedtime stories to our 2 year old daughter tonight and I cried in the other room. It's hard. We also have a 7 month old son. This is a time we should be enjoying our family not dealing with this. I'm sure you are a big comfort to your wife. You obviously love her dearly and I'm sure she feels that. Good luck to you.

Walt,

If I didn't know better I would think you were describing to a T what I went through starting in April of 2006.

I will send you a private e-mail message rather than take up a lot of space here on the site.

Bill D.

Walt,

Below I am reposting a post I made several months ago describing what I went through during the rad Tx. As you can see I had almost the identical Dx and Tx. Please note I had concurrent chemo but I did not have a Peg. I hope this helps prepare you 2 for what may lie ahead.

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

Hi Walt,

Welcome to the site, but sorry to hear about your wife.

Since David has covered a great deal of information I will just stress one point. Nutrition is the single most important thing to watch during the treatments. Be sure to ask your wife's doctors what they recommend for a daily calorie intake during her treatment and stick to it. She will need the energy especially if she has trouble with nausea and vomitting. If that is the case, extra fluids are required. This is all important because if your wife gets too low on energy because of malnutrition they may have to stop treatment and start over again. You don't want this to happen. It is bad enough going straight through.

Take care and fight hard.

Jim

Hi Walt,

We all take the treatment differently. In my case, the treatment was not nearly as bad as others.

Some of the things I did which may have helped, besided being in good health prior to starting treatment: 1) quickly deciding on a simple mostly liquid diet to get the needed daily calories (extremely important to get those calories - when it was all over, I lost maybe 3-5 lbs and without a PEG), 2) being open to discussing every problem with my RO and MO (and/or nurses) in order to get a medication for side effects - and trying different medications if the first one or two don't work so well (my wife was very instrumental in this and even recommended some of the medications), 3) doing some form of regular exercise daily throughout treatment (however, nothing too calorie consuming), 4) doing some preventative things daily (e.g., applying radiation cream on my neck and using salt/baking soda mouthwash).

For me the Erbitux caused severe pimples on my face and upper torso. After an initial attempt at topical treatment, I ended up taking oral antibiotics and steroids which cleared them up significantly. The Erbitux also caused some severe radiation burns on my neck - I had a small amount of radiation burn during treatment, but they really blossomed just after treatment ended, clearing up after a short time.

At 4-1/2 months out of treatment, my taste buds have recovered quite a bit (although they are not the same as before treatment) and I just got back some semblence of an appetite (I'm even eating small snacks during the day). I'm making some small amount of saliva (not nearly enough, but at least a little), and I feel very good physically.

My wife was critically important in helping me, and no amount of words can describe her love, patience, and dedication in making sure I got through all this.

Good luck and best wishes,

Chris

I'm very thankful for the responses, suggestions and encouragement. What many of you have been saying coincides with what I've read and heard from others. So, many many heartfelt thanks to you from my wife and I.

The dieticiam has suggested Jevity 1.5 at 4.5 cans per day. This would give Pat about 1700 calories per day. He also stressed lots of water.

I've been cleaning her PEG tube twice each day using about 60 cc of water. This is giving me good practice and I'm pretty comfortable with this process. Pat doesn't want any part of it as is more than willing to let me do this. I've been changing the dressing each day since she had it installed last Thursday. Yesterday I was able to get nurse in the RO's offic eto get us a stopcock valve. This really helps and has eliminated the small amount of leakage she had been having. There's still a little drainage from the tube site itself but this is alleviated with some drain sponges and some tape. Pat is still having a lot of discomfort, bloating and generally distended stomach. She's been a little constipated but has taken milk of magnesia each day. Anyone experience this? Any suggestions? Once agin, my thanks to all. You've been a blessingto us.

Walt

Marvin had about the same symptoms that your wife did and we did the same route. He is stage 4a also on the bottom of his tongue. We are starting our 4th week of rad and chemo. He had a really tough four days last week. He was constipated aslo and was even having trouble urinating. I didnt find this out until we were at the chemo treatment this tuesday and he started to sweat. He also had trouble keeping any cans of boost down. They gave him extra fluids with his chemo and had him take milk of magnesia every 3-1/2 hrs until something happened. It took about 14 hrs before we got any results. We felt like having a party we were so happy. Since then he has been able to keep the boost down and I have started putting more water down the tube also. I was putting things in to fast and found that it takes about 10 mins for 8 oz of boost to go in. Marvin has to have 7 cans to maintane his weight. That has been a challenge with having to drive 60 miles for rad everyday and then they run behind but we have managed this week to get in 7 each day. We too have lots of people praying for marvin which is a great comfort. Even though we don't know why Marvin has to go though this we know it is in Gods hands and at some point we may find the answer as to why. You will find a wealth of information from all on this board. It has helped me out lots of time. My prayer list gets longer everday with the people we meet here and where we go for treatment.

blc,

Get the Carnation VHC. It will drastically cut down the feeding quantity which equals valuable time gained.

David

I asked cvs about it they didnt seem to know of it. Said they havent ordered it. So I will go to Walgreens and check with them. Thanks

Barb, Check to see if there is an Apria Home Care[ google Apria][John actually ended up using the Nutren 2.0 because it was not quite as thick but it had slightly fewer calories] in your area-they are spread out all over the country. They ordered the VHC for us and because John's Doc had written a script for it, the Ins. Co paid for it.
Amy in the Oz

To Walt, Hi! So Sorry you all are having to deal with this instead of playing with the grandkids! It sounds like you have things under some control-good for you! The constipation thing is something you all will have to fight all along.[pain meds , lack of solid food, not enough fiber or hydration, etc. cause it. If you can find one thing that she can tolerate on a daily basis [Correctol helped John] Try is for awhile. Also there is a product called Benefiber, available in powdered form at Walmart, that is tasteless and can be added to most any liquid to add fiber to the diet. We also used Ducoliquid at times. Glad you are where your kids can help. You could get out quickly without support.John's peg leaked constantly abound the incision, we just kept it clean with hydrogen peroxide between showers. And we always put a drain gauze between the plastic and his skin-per his Doc's instructions. Please keep us informed so we can help if needed. Amy in the Ozarks

Walt, if you want to look a little farther down the road, I had a golf ball sized lymph node and a tumor, which were both removed and followed by chemo and radiation. That was five years ago and for a long time now I have felt like a million dollars. Never lose sight of the return to regular, ordinary life that WILL happen.

In the meantime, post all questions and concerns here, because those who are going through it now or more currently than I did, will be here to give you all the answers and information you need. You will find simple solutions here that the professionals don't know. This site is a goldmine for patients and their caregivers, so make use of it.

I found it extremely conforting to connect with people who had gone through things before I did. This is what we can offer your wife. You tell her she is NOT alone!

Hi walt
Liz and Robin here from the UK just wanted to say welcome and trust in these good friends.

To blc,

Remember you have to go thru the pharmacy dept.

blc - I wonder if the accessibility of the Carnation vhc depends on location? I am in TN and I checked at every Walgreen's, CVS, Walmart and several health food stores and couldn't find it. At the different drug stores the pharmacist would always check his "big book" and it was not even in his book. So I did get it online but it was a little more expensive. If you are not successful at the stores closeby, just do a search for Carnation VHC. THey have a website.
Sure hope you find it without going on line.

hi Anne-Marie

I found Carnation VHC at South Mountain Health Supply for a reasonable price and it shipped fast also. It was about $23 per case, the cheapest I could find. If anyone finds it cheaper, please let me know. Thanks.

Vicki

Anne Marie,

This may be helpful, it's a post I made up a while ago:

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.

David - I checked the link and it does make it a lot easier to find someplace nearby to get the Carnation VHC. Happily, my son is past the stage where he needs the Carnation after the small supply I had gotten for him online. But for anyone else that needs it, this sure is a much quicker way to search for it and get the closet place to get it. Thanks for the link!

My thanks to all for the great info and kind words. Pat has had two rounds of Erbitux thus far. Tomorrow she'll have another round of Erbitux as well as start radiation. She'll be getting the Amifostine prior to the Rad Tx and she'll be drinking a lot of fluids (32oz) prior to plus she'll take a Compazine about an hour prior to the injection. She has started to get a bit of a rash on her chin plus a couple of of pimply looking things on her face. Also she has started to experience some fatigue on and off. The diarrhea issue appears to be something I'll have to remain vigilant about. She's had a couple of "regular" days when taking the Milk of Magnesia but as soon as she relaxes on taking it the constipation is back again. Good lesson learned there. Also, she's been reading this message board with me and really appreciates everyone's help and support. So, we'll begin the next phase of our journey as we go forward with rad tx. No matter what - we will trust the Lord. Amen!! Thanks again to all. You're really very remarkable and such a blessing.

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

Walt,

Keep up the good work and tell Pat we are all proud of her.

Walt, I really enjoyed reading your post and like everyone else wishing and praying for the speediest recovery for Pat. It seems you have become quite the caregiver for your wife and I applaud you for it.

Hi, Pat and Walt, What a beautiful team you are!
Here is something to add to the "bag of tricks"- unflavored Pedialyte [found in the Kids sections of good grocery stores]- is somethime much easier on the stomach than Gatoraide and is a great electrolyte replacement. We dealt with many low grade fevers. In an effort to not load John up on too many pills, many times I would just put an ice pack or a cold compress on his head. If it gets much higher than 100, then fever reducing meds are probably in order. Wishing you both the best. Amy in the Ozarks

Hello, Amy in the Ozarks and all the other kind responders,

Thanks for the suggestion about unflavored Pedialyte. I'll check it out tomorrow.

Since my last post Pat's mouth pain has become much worse. It's as if within a two or three day timespan she's gone from doing fairly well to doing pretty bad. Specifically her mouth is just teeming with ulcerated sores. Her lower lip is bigger than Angelina Jolie's (except it has many blisters). Her tongue is noticeably swollen. Also there's a good deal of throat pain. Even swallowing water seems to hurt her.

Today we saw the med-onc prior to her Erbitux treatment and he gave her several Rx's. First, he Rx'd a Fentanyl patch. Reading the sheet on this stuff gave me the creeps. Especially the part that says you basically need to have been on something quite strong (like morphine) when starting use this patch. Pat hasn't had anything that strong and I'm wondering if the med-onc isn't being a little too agressive with the pain meds this early. On the other side however, I'm concerned that my sweetheart is in pain and pretty miserable. Tomorrow we see the rad-onc and I want to run this patch idea past him before we start in to the heavier pain meds.

The med-onc also Rx'd Rozerem for sleep at night. Lately, Pat has been getting up several times each night with dry mouth/pain. The doc felt that getting a good night's rest was important enough at this point that an Rx for something for sleep was in order. He also said that the Rozerem would not be habit forming. (As if the Fentanyl isn't.)

The third Rx was for a Nistatin swish & swallow. I think he tended to agree with me that maybe Pat had some thrush-like/fungal-like symptoms which the Nistatin would be helpful in treating. Hopefully, it will help with all this mouth pain.

The last Rx was a refill for the Doxycycline. The Erbitux rash around her mouth and chin areas are really giving Pat some problems and they want to make sure she has an antibiotic in her for the time being. The closet in our bathroom is looking more like a pharmacy each day.

In terms of what Pat is able to take by mouth the list in becoming much shorter. Anything cold, soft, non-spicy or non-seasoned, etc. is about it. Today we experimented with pop sickles, tapioca pudding, jello, cream sickles. They all seemed to work okay. Today, I supplemented her diet with a three cans of Carnation VHC. Vanilla flavored things seem to be the easiest to tolerate. The pop sickles are the most soothing at this point. The magic mouthwash (once she gets past the short-lived burn/hurt) only lasts a short time - like ten minutes, but relief is relief.

Comment, input and advice is most welcome and helpful. You are all in our prayers daily. God Bless you.

Walt,

I was on the patch and as long as it is managed correctly it is no big deal. I had been on morphine sulfate for a bout a week before I put on the patch. I started a 25mcg patch and worked my way up (25mcg steps) to over a 100mcg then as I started to heal I worked my way down to 0. The biggest side effect (from pain meds)that gave me a real problem was constipation. You really have to take the laxatives and stool softeners, but it's tough to do when you can't swallow that well. I used a pill crusher and put them dow my PEG.

I ate pretty much the same as your wife plus I had lots of soft scrambled eggs.

You are a great care giver and are trusting the Great Physician no matter what. I couldn't have done this without my wife and the Lord either. I'll keep you in my prayers.

Hi Walt
Robin had all Pats side effects by day nine which came as a horrible shock to both of us.He virtually deteriorated over night.Our oncologist decided to throw everything at him at once ,with fentanyl patches ,oromorph ,nystatin ,lignocaine mouth wash and on and on.At day 15 Rob hadnt eaten anything for two weeks and was not drinking at all.His weight went from 88kgs down to 78 kgs ,and i was very scared for him.The point of my post is that today is day 24 and i have to say Rob has improved enormously.He is being fed by tube his weight has stabilised ,his mouth has got no worse ,and his skin burns are holding up.We are thrilled .I seriously expected to be at my wits end this week with the phase two intensive treatments started but fingers crossed he is good (As good as you can be with a mouth full of thrush and ulcers ,and skin like you fell asleep on a sunbed.)Robs routine is three hourly feeds,and in between he sleeps.To me this is a blessing and i thank god every day for his continued good fortune.Of course we had no chemotherapy to contend with as doctors in the UK dont seem to use chemotherapy for Robs type of cancer unless it is inoperable.
My thoughts are with you both every day and i watch your progress with much love amd interest

Love and all the best liz in the UK

Walt and Pat. Good luck with the Fentanyl patch- just a word of caution- watch Pat carefully for the 1st several days. Altho many people tolerate it well, some folks do not tolerate it [reading the side effects scared me to death also, but the Erbitux did too.]John could not tolerate the patch- he went loco on it. Reading all of the meds. above that have been Rx'd for Pat, I hope you are being dilligent about when she starts each one [day, time, etc.] because you may have to backtrack a reaction at some point. [we had a pharmacy in the bathroom too, as well as on the island in the kitchen]and it can get complicated to seperate the "trial and did not work" from the sucessful drugs. John and I both kept a pretty tight journal on a daily basis about what was going on. His Docs and nurses found this very helpful when we were talking to them. Something I have not seen on this forum that was rx'd to a cousin of mine with oral cancer is a medicated lollipop that worked very well for him or mouth sores and throat pain. I am worried for you about the Erbitux- the rash can be nasty and can pop up in her ears, pubic area, scalp, fingernail and toenail area. You gotta just keep watching. Hopefully she will not have that kind of reaction-not everyone does. I do encourage you to enter day and time that she introduces any new med. Being able to review is very helpful. Thinking about you both and wishing you much strenght. Amy in the Oz

Hello again,

Pat made it through her third week of radiation and had another round of Erbitux. Only 18 more Rad Tx's and three more rounds of Erbitux to go.

I know from reading numerous posts here at OCF as well as what the Drs and nurses have been telling us that there will be some period of time after treatment is over before we'll see any signs of improvement (i.e. pain, mucous, etc.) I imagine three to four weeks is an average to start seeing some improvement with gradual improvement thereafter over the course of several months. (Your thoughts/input here would be appreciated.)

This past week Pat really started to experience the side effects of mucous, phlegm, throat pain, etc. We added liquid Lortab to the arsenal this week as well. Also, this past week we were very focused on nausea and vomiting. I was initially thinking the culprit was the Fentanyl patch because shortly after taking it off we had a short reprieve from the nausea and vomiting, however, this respite was short lived. Soon enough these symptoms were back again full force. It was also at this same time that the phlegm and mucous became so pronounced, so after a process of elimination I've concluded that the root causes were a combination of pain, phlegm and mucous. I know from my own experience that pain came be very nauseating in and of itself. When combined with the gagging effects of phlegm and mucous it seems to make sense that they are the probable causes.

I spoke with Pat's med-onc today and he agreed. Therefore I applied another Fentanyl patch to Pat's arm tonight and I'll watch her carefully. She's done well with the liquid Lortab so far and it's given her some relief. So hopefully the patch will give her some ongoing relief and I can reserve the liquid Lortab for breakthrough pain. I'm now a firm believer that the skill set of a successful caregiving must include trying to be as knowledgeable as possible about current symptoms and symptom changes versus current meds versus recent changes in meds. The amalgamated effect of all three makes for a quite the mystery to solve - Not so elementary my dear Watson.

We've had good results with the Carnation VHC, but after some experimenting I've decided that it needs to be watered down in a ratio of at least one part Carnation VHC to one part water. Also, from experimenting I concluded that I get the best result when I mix the Benefiber with only water and give it to Pat separately in lieu of trying to add it to the VHC. I haven't had any real luck when mixing the two together as the combination goes in the Peg tube very slowly. Much better result separately.

Also, I've noticed that the liquid Lortab needs to be mixed with about three or four ounces of water and given separately. When combined with the VHC it's even more slow and very gummy in my opinion. I'm sure everyone's experience is different and I can only go with what works for us.

We had another change in our routine today when one of the onc nurses at the infusion center where we get the Erbitux suggested some additional fluids. We've been talking about this for a while now and felt that Pat could use some additional hydration especially in view of last week's numerous vomiting episodes. Pat reports that she feels much better this evening and we are scheduled to go back again tomorrow for some additional fluids before rad Tx. If this continues to be of benefit we may try this two or three times per week going forward. We'll play it by ear.

So, that's my latest report on how my sweetheart is doing and how this portion of our life's adventure together is progressing. We'll continue to trust the Lord no matter what.

Walt

Walt, what a SweetHeart you are!! Your brain is churning every minute to stay on top of Pat's treatment. What is your profession? { you are a natural born sleuth and caregiver] One word of caution- you must take care of yourself- ie-please get enough sleep and decent meals- so you can keep the pace up. I am sooo cheering you all on. Amy in the Ozarks

Hello Amy,
Thanks for your encouraging words. I double majored in Physics and Electrical Engineering, so I guess I'm "an inquiring mind and I want to know."
I forgot to mention earlier that Pat doesn't go anywhere now without a container of ice chips and a spoon. The cold of the ice soothes her throat a little and the additional liquid seems to help with the dryness.

As for me I'm now very familiar with Imodium AD. Normally that's not a product I would use, but it seems the last few weeks my system is out of sorts (as if I didn't know why). Sometimes I don't know whether to wind my watch or scratch my head but we'll eat this elephant one bite at a time. We'll just start at the tail and work our way forward.

Thanks again. God bless.

Walt

Walt, Your attitude and approach about caring and sharing this journey with Pat is invaluable to the folks on this website. This is a journey that was never anticipated for most of us and you are proving that it can be done with strenght and love. I am not surprised at your "double majors"- but I've gotta say Yuk to the physics-I majored in English in college- but,like you "I wanted to know" too. Hindsite- I wish I had spent more time just being with John, and less time researching stuff I could not do anything about. What you can do for Pat is to nuture her, advocate for her, and keep yourself healthy enough to see this through. There is ,yet, alot of elephant to eat and if you are on Imodium AD now, you probably need to re acess

excuses: couldn't spell "re access", hit the wrong button, yada-yada- bottom line=- Walt, you are a real life example of what caregiving is all about. Amy in Oz

Hello again,

Well, we've made it through our fifth week of radiation Tx and the seventh Erbitux Tx. Following is a quick summary of how Pat is doing.

First, Pat's nose is just a mess. Even though her cancer is base of tongue SCC, I think the angles that they are directing the beam must be in line with her nose because it's sure taking a beating. Her nose is quite crusty inside and kind of crocodile skin outside. To help with this I've tried a few things. I take a vitamin E capsule and squeeze it out on a Q-tip and she can get this around her nose and a little bit in the nostril Also, I've been using saline spray as well as cutting up strips of a 4X4 drain sponge and getting it really damp with water and she puts these up in her nostrils. This approach helps somewhat.

The second item I will mention, but the biggest issue, is nausea and vomiting. Pat tries to take some of her meds (pills) by mouth and this will often set off a bout of nausea. Also, for reasons that are hard to pinpoint she will just get nauseous and then have dry heaves. Sometimes this will happen after radiation, sometimes it's over exertion, sometimes it just happens. The thing is that we're seeing a lot of it as we close in on the remaining treatments. I imagine it's just an accumulation of all of it and this goes with the territory.

Third, they made the new mask this week and did the CT boost. So, after this week they will zero in on the primary at the base of her tongue and concentrate on this for the last eight treatments. Pat's med-onc seemed to think this was about as bad as it would get in terms of Erbitux-related symptoms while her rad-onc seemed to think that her radiation related symptoms would continue until treatment was over and persist for a few weeks after treatment.

Fourth, Pat has been getting additional hydration five days per week for the last two weeks. This has made a great difference in that she feels a lot better, plus the damage to the skin around her neck and throat have been minimal. One of the nurses at the infusion center suggested the additional hydration and she was right on the money. From our experience I would suggest this to anyone undergoing this treatment regimen. I've suggested to Pat's two Oncs that they just make the additional fluids a standard protocol. Anyway, it really helped out my sweetheart.

Lastly, Pat's spirits remain very positive. She was a bundle of energy prior to the big C and she often tries to overdo it. It's hard to balance getting her to take it easy versus various projects. Either way I think this is a good problem to have at this point.

We've met many folks during the course of treatment and been able to share in their lives. It's always so interesting seeing the various folks who touch our lives as well as the people we come in contact with. Sometimes a kind word or just listening makes so much difference.

I cannot say enough good things about the OCF forum. What a blessing and encouragement we've found here. Thanks to all for your help, kindness and prayerful support. We've sent many other H&N patients here. Thanks again. Pat say "Hi" to everyone.

Walt

Hi Walt,

Glad to read your post on Pat's progress. You are right about the extra hydration, we also did that with Jack and it made a big difference. What kind of anti nausea meds have they given her? If she's not on the heavy duty ones like Zofran that might help. If she is on that ask them if the dose could be increased. Jack used Zofran 8mg twice a day in the form that melted under his tongue since swallowing pills was too difficult at that time. He also had compazine, a milder one, for breakthrough nausea.

We also found that sitting/walking outside helped. One of the nurses told us to try it so when we got home from the treatments we would sit on the stoop or in the back yard. Sometimes he would walk up and down the driveway just to be outside. Not sure why it worked but it seemed to.

Other than that, I think he used to smell pieces of fresh ginger - okay that one was weird but we figured it couldn't hurt.

The radiation symptoms do continue after treatment ends and some people feel worse just so you're prepared. Then one day all of these side effects stop and they start to recover. It takes a while but Pat will get there.

Continued good wishes to you both. Keep posting.
Regards JoAnne

Hello JoAnne,
I was wondering whether you had any trouble getting the Zofran ODT approved. We have Aetna and they only cover 12 pills per month. The nurse were telling us that they were hideously expensive and recently I asked the pharmacist at the local CVS to price out 20 pills. I wanted to know what it would cost if I wanted to get extras. The pharmacist said the cost would be $899. I was shocked. Forty-five bucks per pill!! Unbelievable. I think I'll talk to the med-onc as well as call Aetna and find out about some sort of special authorization. Pat is really starting to use more of these each day.

Any input is always appreciated. Incidentally, I have Compazine for her as well as the Phenegran suppositories. However, I find I'm having to rely more on the Zofran since it's so quick acting. Thanks.

Walt

Hello,
Well, we have completed Pat's sixth week of treatment. To date she has been through 30 Rad Tx and 8 Erbitux Tx.

This past week the fatigue really started to set in plus we are still having the ongoing nausea/vomiting to deal with. The rad-onc increased her Fentanyl patch to 50 mcg, so that may be comtributing to the nausea. Also, this past week Pat had some heavy duty diarrhea. Previous weeks we were dealing with constipation and now the opposite.

Another thing I have changed for her this week is adding Saturday/Sunday hydration with Zofran. The additional two days brings us to a seven day per week regimen at the infusion center so we were already pretty used to the routine. From my experience in helping my sweetheart through this thing, I can strongly recommend getting all the IV hydration possible.

So, we have Erbitux on Monday and three more radiation treatments ending on Monday and then the treatment portion is done. Then on to road to recovery. I expect it will be at least two to three weeks before we see much improvement. In fact I expect her to get somewhat worse since the effects of the radiation/erbitux are cumulative. I plan to continue her hydration after Tx for as long as she feels she needs it.

Pat is looking forward to the day she can get the peg tube removed and have an actual meal. I'll be very glad for her. After treament is over and she has recovered we're going to take dance lessons and learn the salsa. It should be great fun.

Our thanks to everyone for their input and encouragement. We will continue to trust the Lord no matter what comes our way. I'll give another report in a few days. Thanks again.

Walt

A minor edit to my previous post. Pat's Erbitux will be finished on Monday and her radiation treatments will finish on Wednesday.

Walt

Hi Walt,
We have Aetna as well and did get special authorization for a 30 day supply of zofran ODT. The doctor's office has to initiate that for you because it's based on medical justification. I believe it was our MO that called and got it. The price is rediculous but it was the only thing that worked for him. Also it won't be an ongoing expense for Aetna so they should approve it.

The extra hydration is a great idea and you are right that things will get worse before they get better. Even though we had discussed that Jack was still shocked when that happened, but it does pass. Pat will start to feel better and take those salsa lessons. She'll be finishing up right before Cinco de Mayo so maybe that will bring her luck.

Regards JoAnne

Walt, so glad that you all are near the end of tx. one thought- Pat doesn't have to wait for the tube to be out to start eating again. As soon as she feels up to it,you can start Cooking Hope that is soon. Amy in the Ozarks

Hello,
It's been a while since I posted anything, but I wanted you to know that Pat finished her 33rd radiation Tx on 5/2/07. Total treatment also included 9 Erbitux Tx.

Her symptoms all increased and got worse after treatment as expected. In fact sixteen days after treatment I'm just now starting to see some modest signs of improvement. For example, the ulcers in Pat's mouth are starting to lessen in number and are not as painful. What a blessing this has been. In fact, today she took about three sips of ice tea. (Only H&N patients and caregivers could appreciate something as simple as this.)

One of the things I noticed is that even after Tx the Erbitux rash + radiation burns got much worse. To help combat this I concocted my own little approach which goes something like this.

In the morning I use a spray bottle with a 50/50 mixture of Hydrogen Peroxide and water and I apply it to gauze sponges and then apply this gently to the skin on Pat's neck. The process takes a while but eventually you'll see the dead skin start to bubble up. I use a wet sponge to debride the skin and keep going until it's all gone. The front of her neck plus the back of her neck are the problems areas and it's quite extensive so this process takes a while. Once the skin is debrided, I apply a generous amount of Elidel cream. Elidel is a Rx antibiotic cream that the MO Rx'd. I let this soak into the skin for about thirty minutes and after that I apply a liberal coating of Bag Balm. Bag Balm is similar to Utter Cream, but in my experience much better. Needless to say, I use rubber goloves during this whole process to avod spreading germs. I repeat this process in the afternoon, and again in the evening before she settles down for the night.

Following the application of Bag Balm, I take about a dozen 4x4 sponges and soak them in clean water. I apply these to the skin over the Bag Balm. Prior to this step I make a donut collar out of dry 4x4 sponges. I tape them together with the 3M paper tape in the shape of a donut collar. So, once I have the wet sponges applied, I place the dry donut collar over top of it to soak up some of the moisture from the wet sponges, plus provide a protective layer. I put a couple of pieces of tape where the layers crisscross in the back of her neck and everything stays in place.

This has worked well so far and Pat says that the coolness of the moist sponges is very soothing. Thus far we're seeing a little improvement each day. I've found from trial and error that this is much more desirable that the usual crocodle skin that is common with Erbitux and Radiation Tx.

I have continued with Pat's hydration Tx each day, seven days a week. From our experience I can't see why anyone undergoing this type of Tx would not insist on hydration Tx each day. It's really made a big difference with Pat.

Anyway, that's what is new with us. Our thanks to all. God bless. Any questions please ask.

Hi Walt, Glad to hear that Pat is starting to come to the other side of treatments. I think your solution to the skin irritation was very creative and I really hope it works for her. Keep the hydration and nutrition going and this will soon be a surreal memory. Regards JoAnne

Dear Walt, What a post! and it's so good to hear from you and to hear that Pat is doing better. Today 3 sips of tea, next month, maybe an English High Tea party. John had a weekly infusion of Erbitux for close to 8 months so we spent alot of time dealing with the "Erb rash". His Chemo Doc only had 2 solutions - stop the tx for a week or so and try antibiotics. How I wish I had known about your approach then! I really encourage you to print your "rad. burns + rash tx." and give it to the Chemo Doc. and send it to the folks at ImClone for their reaction. You two are a beautiful couple and a wonderful example of what love is all about.Thanks for sharing. Amy in the Ozarks

Hi Walt

how great to get an update on Pats treatment and progress,and what a lucky girl she is to have a sweetheart like you.
I wish you continued god speed in the recovery and hope all is well.

Liz in the Uk

Hello All,

I thought I would give another progress report.

Pat finished radiation/Erbitux Tx on 5/2/07, so we're now four and a half weeks post treatment. There were days that I thought would never end, while other days seemed to whistle past. Overall, I'd say that the whole ordeal has gone very quickly looking back on it.

Collectively and individually our spirits and mental outlook have been positive and upbeat. We've drawn so much strength, encouragement, and inspiration from the folks here at OCF as well as doctors, nurses, friends, and family. The many prayers and awesome support have made such a difference.

Slowly, but surely, Pat's Erbitux rash and radiation burns on her face, nose, chin, neck, and back of her neck are healing. In fact the only area that's still bad is the area on the right side of her neck where they really cooked the nodes and the primary tumor site. We've tried many things, but the one I keep going back to is the Bag Balm. It still gives Pat almost instant relief once I put it on the burned areas.

Pat still cannot eat anything by mouth, so I'm still feeding her three cans of Carnation VHC per day through her peg tube. The med-onc was so impressed at how well Pat has maintained her weight throughout this whole ordeal that he now routinely orders the Carnation VHC for all of his peg tube patients. Also, I've been able to suggest this to numerous other patients that we see at the IV infusion center. They are also experiencing very good results with the VHC. From what I've read, I expect it will still be a few more weeks until Pat is able to eat normally. Any advice from others on this subject would be appreciated. Pat is anxious to be rid of the peg tube, but I must also say that without it she would not be here today in my opinion. I guess it also goes without saying that we're ready to resume our "normal" lives again - depending upon what "normal becomes over the next few months.

Another treatment option we've had enormous success with is getting additional IV hydration each day. I've been taking Pat seven days a week for the last several weeks for IV hydration. Each day she gets 1 liter of normal saline infused over two hours. Also, on those days when nausea was an issue she got Zofran through the IV as well.I spoke to the med-onc about the burns/rash on Pat's neck and as a result the med-onc ordered Decadron two days per week to help heal the burns for the past two or three weeks. (Decadron is a very strong steroid which also has an anti-nausea effect.)

On Monday we'll be going for the first follow up PET/CT after treatment. We'll then meet with the rad-onc on Thursday to go over the results and see if we got it all. As I've said so many times the past few months, if we get a good report we will Trust the Lord and if we get a bad report we will Trust the Lord - either way we will Trust Him no matter what.

So, that's my little update. I will keep you posted as we progress. Thanks again to all of for your support, prayers, advice and input. You've been such a blessing to us. We will continue to hold you all up in our prayers as well. God bless you.

Walt

Man, I gotta get me a commission on that VHC stuff.

David...............great call on the Carnation VHC. It's made all the difference with Pat's ability to maintain her weight. I agree with Brian that it would be great if they would become a sponsor of OCF. If I can help please let me know.

Walt

Walt and everyone,

I have made numerous calls, so much so I talked to the same CSR on the phone the other day. She told me she remembered me from a few weeks ago.

I just can't seem to reach the right person to make my pitch to. I plead with every CSR I talk to to have someone return my phone call to no avail.

I won't give up. I take it as a good sign she recognized me. Maybe they will get soooo tired of hearing me, they will finally pass the buck.