I always come here when I encounter a new problem with my husband's treatment. To recap a little, my husband David had a tumor on the back of his tongue and lymph nodes on the left side removed, his cancer is Stage IV and he is going through 32 radiation treatments, and 6 chemo (cisplatin) along with the clinical drug Erbitux (7 sessions). He has one chemo/Erbitux left on this Wednesday (20th) and will complete his radiation treatments on the 29th. He is snapping at the kids (6 at home, youngest is 3 years) and me since he is tremendously constipated and in pain, especially the outside of his neck where they aim the radiation, and inside his throat. Right now, I'd say the outside is the worst. He was wetting his neck area because he has a beard and the Erbitux rash was causing seeping from the rash and crusting up all over his beard. A nurse suggested he lay a warm, wet, soapy compress on his beard and let it soak, then scrub the crust off. She said to do this a few days in a row. Since he has started doing this, yes, the crust is almost gone, as is parts of his beard, but I have noticed him complaining much more about the neck area hurting. I'm not a nurse or a doctor but I suggested today that the wet cloths were hurting the neck so he has discontinued. For pain he has Lortab, which he can use every 4 hours, and morphine, which he has only used at night so far, but today I gave it to him when his neck was hurting so bad. He does have a feeding tube and I have added Benefiber to the liquids I add, and he still is taking Senokot-S 3 times a day (4 pills) but it has been since Tuesday since he has had a bowel movement. My questions? Should he have something else for pain? And any ideas about the constipation?

My husband got extremely constipated when we first got home from treatment - I bought a Fleet's enema at the drugstore and it helped enormously! Admittedly, I'm a nurse so I was comfortable giving it to him - but there are instructions on the box and he could probably do it himself. If the enema doesn't work, there are other things his doctor can prescribe.

We also switched to the fentanyl patch at the end of treatment because the short acting pain relievers (e.g. Lortab) were allowing his pain to spike when he hit the 4 hour mark. The patch has been awesome - can't say enough good things about it.

I'm still new to all of this and I'm sure many of the more "experienced others" will have more advice and experience to share.

Dear MTM59, I am so glad you will come here for support, and I hope we help you. Fighting this battle is so different for everyone, but some things are pretty consistant. It sounds to me like your husband's system is going to really have a problem balancing the pain meds and constipation. Maybe an enema to get him cleaned out is not a bad idea- but, at the same time, he needs to get alot of fiber to keep him moving. The Benefiber has really worked for us. I am surprised [based on John's experience with Erbitux] that no one told him to shave the beard before treatment started. The rash has been really bad for John and we medicate his face, ears, chest and back daily. The rash is so pronounced that he gets stared at if he goes out.
I really hesitate to say this, because I know how difficult it will be- and I am speaking from personal experience- but you need to keep the kids away from him as best you can. If you can pick times when his pain meds have kicked in and he feels o.k for a little while, let them interact with him [ask him first] The battle he is fighting does not allow much room for diverted energy right now.I had to remind my grandchildren, who were living with us, that when they had a cold or sore throat, etc. they wanted to be left alone, and that was how John was feeling. Not easy but honest. I am sending you many hugs, pats on the back and prayers for strength and determination to get your family through this. Amy

MTM59, your husband needs and has a RIGHT to better pain management. At this point in his treatment he really does need the Fentanyl patches, which are good for a much longer time and can be doubled, or tripled as necessary. Because I have very fair skin and received a big dose of radiation, I had incredibly bad burns on my neck and jaw and the OTC things did not deal with the pain. Only when I got the patches could I relax and not feel pain. Copy the name of the medication down and give it to the nurse at your husband's next treatment, telling her that he NEEDS a prescription Right Now. As I recall, it takes as long as a day to kick in, but when it does....ah, sweet relief...for him and by extension for you and the children too.

MTM59,
My husband, Tom, finds that glycerin suppositories help to "get things moving." Definitely mention his constipation to his doctors. There are prescription stool softeners they can prescribe.

Regarding the Erbi-rash, the radiation should take care of the beard in that area. Like Amy, I'm surprised they didn't recommend he shave, however, my husband found that shaving even his facial hair made sparse by radiation could turn into a mess with the rash. We were advised to keep the rash areas well-moisturized. They recommended udder cream, I think the brand name is Udderly Smooth (tube is spotted like a cow)--rich, but not greasy.

For the pain in his throat, Fentanyl patches are, as my husband says "the bomb!" Also, when it wasn't too painful, he tooks sips of Aloe Vera juice. Once you're done with Erbitux, the rash will diminish, but then his skin will look like a bad sunburn. The docs prescribed a cream called Biafine for Tom and it really helps. Has your husband experienced cracking skin on his hands and feet? This is another Erbitux side effect and we find that Biafine really helps it, too.

Hang in there! It WILL get better, but remember that the radiation keeps working for a couple-few weeks after the treatment ends. I'll echo the others here in saying get the Fentanyl patches NOW.

Joyce

Just a note that I, too, was given Udderly Smooth in Rad 4 years ago and still use it as a moisturizer. Just as good if not better than the much more expensive brands I used to think I needed. It helped a lot during treatment, and works just as well now.

My bowels only moved every three or four days. I took two Senecot-S in the morning and two more at night. The doctors told me that they Senecot-S was the preferred answer.