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.