Hi everyone,
Questions:
1.When you are only eating liquid thru a PEG how often do you defecate?

2.How high do you let a temp get without treating it? (in other words how high over 98.6 but under 100.5 do you take a tylenol?)

3.Best remedies for Erbitux rash (like head and shoulders) and radiation burns.

4. Are these throat issues from radiation going to come and go, or is it a steady decline? (In other words, will he maybe eat again for a day or so..Heal worsen, heal worsen...Or is it just downhill for months?)

I changed the subject to "My Dad" from "Dad"..
It is week 3 for Dad and all of the problems/side effects are starting. He has thrush, sores and swelling on his lip, the Erbitux rash, hasn't swallowed food in three days,experiences nausea in the morning,complains about a pain in his side/back, and is constipated from morphine.
He still has more discharge around his PEG than I thought he would. (It isn't infected though because he has had it looked at often.)
What we are doing:
Nutrition:
PEG feeding 2 cans 3 to 4 times a day
Water each time (which is not enough)

Pain:
Morphine 15mg if he wants it
laxative because of the morphine
Nausea med as needed

THroat/Rad:
Oral wound rinse 2 times a day
Thrush medicine 4 times a day (you swish it around and then swallow it)
Baking soda/salt mix for mucous ropes
Irrigate pocket in his mouth 3 times a day (when he was eating, not so much now)

Chemo:
Dabber for Erbitux rash (alsohol based)
head and shoulders for Erbitux rash - works!
Aquaphor for radiation burns.

PT:
Swallowing exersizes (we are bad about doing these -He's just had enough, usually..but I'm not so worried because he is still swallowing pills..is that enough?)

Mom deals with most of this but I relieve her 2 1/2 days a week. I have taken over one of my Dad's duties as well, taking his brother out of a veterans home 3 hrs away every 2 weeks for food, shopping.
Mom and I had a big fight the other day, so I am stressed about this as well.

Pretty much how I feel is that I am fine when I'm with the patient but can't stand the rest of humanity and their daily "problems". I just have little to no tolerance.
When I am with Dad there is so much to do as he is getting increasingly high maintainence. And I like it in a way, because I lknow what to do every sec. He is still the most pleasant man on earth-by the way!!
I am grateful for this site because I have had few surprises.
By the way: At the middle of week 2 he was in pain, his tumor was swollen and he had to press on it to swallow. Then, on that Sunday the tumor went way down and he was psyched about it! The docs said it is normal for the cells to get aggravated when you first start to combat them.

Hi Mariam

sounds like everything is going pretty much as expected.I too found ordinary things irritated the hell out of me,i always felt like screaming who the hell cares MY HUSBAND HAS MOUTH CANCER.You do become totally bound up in the whole thing,and life passes you by and you dont even notice.

In our case the throat thing got gradually worse until some time after treatment finished,the rads burns were the same,
Robs tube feeds contained fibre so he went to the toilet every day with the aid of 15 mls of liquid lactulose every morning for the morphine constipation.
I cleaned,the peg tube site every day with surgical wipes,and unclipped the tube and deep cleaned round the hole once a week.
Any temprature over 99 should be recorded and treated with some sort of anti pyretic ie panadol or neurofen and if it persists for more than 24 hours see the doctor.

Keep up the good work

love liz

Thank you for your response Liz.
He went to the ER today with fever. I think he has now experienced everything (all side effects of treatment). The doc says that his tumor is breaking up faster than usual and that is why he's so sick so soon.

I went through almost the same treatment. I received 7 weeks of chemo, with Erbitux, before the radiation started, for 14 weeks total. I got a very bad rash within days of starting the Erbitux. The doctor skipped a week of it and prescribed an antibiotic. I can't say the antibiotic did much, but the rash did settle down after a couple of weeks. I haven't heard of using Head and Shoulders, but certainly would have tried anything.

The morphine also gave me instant constipation. So I didn't really take much during the treatment. I did use something call Magic Mouthwash. It's by prescription and the pharmacy mixes it up. I would gargle with it and my mouth would be numb for an hour or two. This helped with brushing my teeth and swallowing things. I stopped eating after the first couple of weeks of radiation, just using the peg tube, but I continued to drink water for the whole treatment. I was told that liquids can be just as good for the swallowing muscles as food. And after the treatments, I was able to transition back to eating without too much difficulty (other then the taste of things).

I also used the baking soda/salt water gargle quite a bit, especially after my saliva started to thicken up. It was actually very refreshing and helped to clear my throat. I found it tasted better with sea salt.

I also used Aquaphor for the radiation burns on my neck. I still ended up with a lot of scabbing, but looking back, I probably did not use enough or put it on frequently. I probably just wanted to be left alone, not always the best thing.

I hope any of this helps. Good luck.

Hi, Miriam, I'm a little late chiming in here-sorry- but I will relate some of our experiences to you in hopes they will help. To #1. That is a "management" problem, depending on the individual AND which peg nutrition he is on, how much fiber is in it, what other meds he is on that might cause constipation, etc.You really have to be a "Sherlock Holmes" on this one.
#2. Fevers [low grade] under 100.5 can usually be controlled at home with cold compresses and acetaminophen alternating with asperin[if he can tolerate them]. Some fevers are associated with with tx he is on and some are from other problems. We were told that if I could not get John's down to 100.5 over a 24 hr period, then go see the Doc. or call his nurse.
#3. The Erbitux rash was a bear to fight- Head & Shoulders did help, as did Clyndimycin[sp?]. Never rub his skin-always pat dry- We had to stop the Erb. tx on several occasions to get the rash under control.
#4.The radiation issues are going to come and go, as you stated. Every day will be a new day-you just need to be prepared for that.
#5. The morphine will cause constipation-you all need to try various OTC remedies to see what might help there.
#6. Suppliment water, Pedialyte, Welches Grape juice, tea, anything liquid, between feedings to help keep his liquid content up.Even 6 to 8 additional oz. will help.
#7. Does he have a suction machine?? Does he NEED one to get the junk out of his mouth to help him swallow or just feel better??
#8. You and -Especially -your Mom need to carve out some down time whenever possible.. Find a way to designate to friends and other family some of the "non- Dad personal" chores that need tending to: gro shopping, laundry,meds pick-up, yard work,house work, etc. You have a long haul here, so it is vital that you both take care of yourselves. Keep posting, it will help to relieve some pressure and you will always have support from those of us who have been there and care. Amy in the Ozarks

Hello. I too am chiming in a little late, but I thought I'd mention some things that helped us.

1.) My dad's bowel movements have been pretty infrequent. He takes Colace (Rx) and Senokot-S (OTC) every day, plus a Dulcolax suppository if he's really getting inpatient. (The suppository seems to do the trick within an hour!)

3.) As your docs about Radiaplex for the radiation burns. My dad has used it pretty religiously (3x/day) and his skin has held up really well. No blisters, bleeding, etc. In my dads case, the Erbitux rash eased up a LOT after the first couple of weeks. Hopefully you'll experience the same.

4.) The throat issues seem to steadily worsen. However, be aware of what he is using. My dad was given a "magic mouthwash" that just tore his mouth apart. He used it the first time in the second week of radiation and his mouth pretty much erupted in ulcers. He stopped using it and his mouth healed quite a bit...until the increasing radiation made it worse again.
Also, my dad started with the mouth rinse to prevent thrush. He could NOT take that either. He was switched to Diflucan, which was easier on his mouth and he has yet to get thrush...knock on wood.

One last thing, if you don't mind, I'd like to email you the "drug log" me and my mom have been using to monitor what my dad takes. I think this is especially important when there are two caregivers, since you're probably not staying up on his meds on your "off" days. The log we used it just kind of a modified version of the one on this site. (Which I believe can be found in the "getting through it" posts.)

Good luck!

Thanks guys (I was wondering where you were!!)
The ropey saliva/choking just started night before last.He does not have a suction machine but honestly I don't think he could handle one right now..-He has too much pain. He sees his ENT nurse tomorrow -thank God.
He is out of ER now, still waiting for some swabs to come through to know if he has an infection or not.
I am not with him at this time, I drive over Weds to relieve mom and bring him back home on Fridays for the weekend (although weekends might be over)The hospital he is at is 3 hours away but we have an apartment there to be near him.
Yes, feel free to email me with anything Chicagosteph, and how is your Dad? It looks like he finished treatment on 10/2.
Thank you all so much.
[email protected] is my email

Hi Miriam,
My mom was given tussionex, it helped with her mucous.
I too was annoyed with anyone not involved with my mothers care. My best friend would phone me and tell me about how she had to scrub stains out of her kids clothes. On a 'normal' day that would irritate me, can't tell you what it did to me through all of this.
My mom went up and down with eating during her tx's. She only got the ng tube on 9/17 and it was removed last week, it was fractured. They didn't replace it, they trusted us to be able to get her calories in....why do they put so much trust in me???
All through mom's tx's she had diarrhea. Doc's didn't seem to concerned.
We too used the aquaphor. The head and shoulders nearly made my mom come out of her skin, we found that Dombrero soaks helped most, that and time of course. The soaks are over the counter.
I would ask for the tussionex, that releived mom of choking within a day!
Donna

Mariam, if the ropey stuff continues\gets worse over the next week, do ask about a suction machine. It is a very gentle suction with a small tube to insert into his mout: he does not have to let it touch his tongue or mouth tissues. His ins co. should pay for the rental of one, but if you can't find one, I will gladly send you the one I have. It really does give relief. Amy in the Ozarks

Mariam --

If your dad is still in so much pain, then you need to have a serious talk with his doctors about appropriate pain management. He may need to be shifted over to the fentanyl (Duragesic) patch that many folks are given when they find morphine (he's not taking oxycodone?) no longer does the job or is causing too many digestive upsets. I know my husband found that oxycodone not only caused constipation, but also a constant queasy feeling. He did much better on the patch, with the caveat that it sometimes takes a few days to adjust to it (and some never do) -- he had very vivid dreams and even some nightmares for 4-5 days, had to use a night-light! He did take tylenol for break-through pain, but always after checking his temperature. Btw, Hopkins wants you to call day or night if a temperature over 100.5 occurs. We caught a potentially serious blood infection in my husband by being on top of this.

Some tips: The Hopkins oncology nurses prefer the senna tea Smooth Move to Senakot -- it can be given by PEG and seems to work more reliably. Given with Colace. This tea can be purchased in many places, including GNC and Trader Joe's.

Mucinex (without antihistamine) can be given to thin the ropy discharges, the caveat here is that it is a pretty large tablet which, being timed-release, cannot be cut or ground up. Take up to 2 tabs every 12 hours, with ample water, or 1 tab every 6 hours (what our RO recommended). If your Dad cannot swallow it, you can substitute guafenesin syrup (sold as Tussin) -- make sure it is the guafenesin ONLY with no antihistamine. The catch here is that the pure syrup with burn his mouth so the dose must be well-diluted in at least 4 oz. water, given every 4 hours at most.

Get a warm-mist humidifier and keep it going all the time in his room.

The suction tube does work, many have said it really made a huge difference to them -- if your hospital cannot supply, a medical supply house can rent one to you. Insurance should pay.

Have him sleep with his head slightly elevated on several pillows. It helps prevent that choking feeling.

My husband hated the "magic mouth wash" and in fact, it amost caused him to aspirate food. (Our RO nurse hated it for same reason). He found that frequent rinsing with a salt/baking soda mixture and also, an l-glutamine rinse (5 g l-glutamine powder in 8 oz. water) helped. He used Ulcer-ease some (this is a phenol rinse, rather potent but numbing!) and also, the over-the-counter coating agent called Rincinol. The latter has the same ingredients as the rather expensive prescription material Gel-care, made by same company (G.U.M.)

Watch for thrush -- ask the nurse to check regularly as even with Diflucan you will only keep it "at bay" -- swishing with active yogurt or Kefir is supposed to help maintain normal mouth flora but I am not sure this works. Might be worth trying.

It is vital that your Dad do exercises to prevent trismus (restricted jaw opening) -- my husband got a TheraBite system and his insurance paid for it as it was prescribed by his ENT, but there are other exercises which though perhaps not as effective, will help. After the end of treatment, be sure he continues with these as fibrosis and scarring can "sneak up" on one -- also he will need a post-treatment swallowing evaluation (usually involves fluoroscopic barium test done about 6 weeks' out) and this may well result in his being given exercises to improve his ability to sallow, which will be affected by the treatment no matter whether he eats all the way through or not. My husband found these really helped within a few weeks and months, he did them religiously several times a day.

(Check the Oral Cancer Foundation web site -- the actual site, not the Forum) for information on some of these side effects and how to ameliorate them.

Finally, since your Dad has a tonsillar/base of tongue SCC, he shoud know that the majority of these appear to be due to human papilloma virus and he should be tested for this. If he is HPV+, it will mean something re his response to treatment (better) and chance of recurrence (far less). In the future it may also mean he could be a candidate for some of the therapeutic vaccines in trial (to ensure that the virus is truly gone from his system), so important to know this even though it will not make a difference in his initial treatment.

Gail