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