Also remember you can use your PEG for hydration. Just be sure the water you put in there is room temp--too hot or cold could make you more nauseated. Or try putting in hingerale--it had a slight queasy-stomach soothing effect for me even when it went through the PEG.

Michael --

What are they giving you as the pre-chemo IV anti-nausea drug? It simply may not work well with you (everyone's different). They must have some other options up their sleeves -- and you may want to ask about acupuncture. Ativan made Barry spacy and woozy (even taking just 1/2 tab) which didn't help his nausea at all so he's stopped it.

What are you doing to protect your mouth and skin from radiation damage? Or have you felt well enough to even think about doing anything? Barry's swishing with cold 100% aloe in mouth immediately afterwards -- if you do that don't swallow it if you are nauseous -- and then applying aloe or radiacare gel to skin, followed by Biafine. So far so good but it is only 6 days so a l-o-o-o-n-g way to go...

Gail

Michael, Pedialite [in the baby food section of the gro store] and Gatoraide are also good thru the peg or orally to help combat dehydration. Hope this goes away soon. Amy

Hi all! This is Seth, Michael's caregiver.

Looks like he's kept you all pretty much updated here and we are both greatful for all of you. I wanted to thank you and ask you some questions-

1) Any ideas what I should offer to eat for Michael at this stage and later? Soft foods, Jello? etc

2) Are there any other tricks we can use to help him get through this? Certain herbs, aloe, etc?

He may not be able to post as often since he is fighting the nausea. I'll try to check in here as often as I can. This has become my new full time job!

Thanks again to all.

Hi Seth, glad to see you! Full time job indeed and a whole lot of trial and error over the next few weeks. Based on my experience since April with my John, your #1 job will be to be sure Michael does not get dehydrated and is getting any pain meds he needs. This meant,to me, that I had to have a notebook, with entries -sometimes hourly- of what he drank orally, what went thru the peg, and what and when he took any pain meds. or other meds. Over the past few weeks, he has felt so bad that he could not remember what he had done during the day or night, so it's up to you. I logged cc's, calories, anything that went into him. We took his blood pressure 2 or 3 times daily[it got really low for a few weeks] Put your nurse's hat on and get ready for whatever happens next. I can tell you that I have cooked and thrown away lots of meals that John thought he wanted or could eat. The food part is trial and error. The peg tube part is NOt trial and error. Use it for lots of liquids and nutrients. If he is having trouble with it, talk to your Docs and get help here. Hope you have time to stick with us, the caregiver role is a challange and you will get lots of help here. We want both of you well so we can come visit. Amy

A cream that i used on my neck that all the nurses were very impressed with during radiation had emu oil in it and I have no scar or sign of even having radiation at this point and im 3 months post tx, www.emumagic.com and i used the theracare lotion. Wish there was a magic wand to wave and make it all better or speedier but there isnt. USE that peg when needed is the most important thing to keep hydrated and stay out of the hospital. If any hitches come up just message and there will be a bunch of replies with experienced replies on its way.
Best of luck and sounds like you have all your priorities all in order and some good help with you.

Hi Seth --

I am my husband Barry's caregiver and he is about 3 days ahead of Michael re treatment (at Johns Hopkins). Here are some tips we use to keep organized:

1) a sheet (by time) for what has to be done each day -- he has "radiation only" days and "chemoradiation days" -- he is getting amiphostine on radiation only days so (for example) has to start drinking 24 oz. water and take a Zofran by 9:30 am to be ready for the injections at 11:00 am (11:30 radiation). We have this all down on a list so he can check it, and whoever is taking him to Hopkins (usually me, but his daughter once a week) is responsible for cross-checking everything. We know as he gets more side-effects he will be more apt to make mistakes, so is checked on throughout.

2) We have (on the fridge) a checklist with boxes for each day, listing things he needs to do to take care of mouth and skin -- e.g. fluoride trays once a day, Thera-bite 7x a day, Biafine cream on neck 3x a day, etc. He checks these off and I also watch him, and check off. Several times I have had to remind or even push for him to do something as he's forgotten or is tired or queasy, and I know this will only get worse as the treatment progresses.

Right now he has no problems eating and drinking but I can see that soon we will have to have a "diary" of calories and hydration. Especially if he has to use the peg.

Now as to eating, on amiphostine days he does have a lingering queasy feeling and some foods do not appeal to him. Things that have tasted good to him -- luckily now he still has all his taste, it's going to be a lot harder when that goes -- are sweetened ginger tea (get at health food store), various fruit jellos, lime-flavored sparkling water, Cozy Shack rice pudding with raisins (mmmm), four-cheese mashed potatoes (comes as dry mix, add hot water -- not "gourmet" but very tasty and also, very smooth), French vanilla ice cream, and chocolate pudding. Quite an eclectic mix but he ate them and that's what's important! He did NOT like the way Boost or any of the other prepared liquid foods "sat" on his stomach and is off them for the moment -- they are very high in fats. Barry had his gall bladder out two years ago and too much fat in a food causes some problems, which we hope the recently-prescribed Reglan will stop this (it seems to). It keeps things moving through and helps avoid that bloated feeling.

If you have problems over the weekend call the oncologist on call at Sloan as they may want you to come in.

Good luck, be strong,both of you...
Gail

Hi Seth, I'm taking care of my dad, who has/had the same type of CA as Michael. He has completed 4 weeks of radiation and 2 chemos. I am in the medical field. My suggestion is to NOT offer things by mouth when nauseated as this typically sets off more nausea. He can get all of his fluids/nutrition via tube. I got my dad a cute little chapstick holder that he wears around his neck religioulsy and he carries water to keep his mouth moist. My dad is doing fabulously, now that he doesn't try to eat anything. He does swallow H2O and religiously does his swallowing excercies. NOW-in our experience, the moth sores came overnight and we were ill prepared. Meaning, we did not have the Fentanyl Patches and liquid Oxycontin. It took a week to get ahead of the pain.
A trick we use in the hospital for nausea post op is having our patients sniff alcohol pads. Strangely, it works. My dad is 100% better since he decided to exclusively use the PEG. Good luck Seth, you and I are in the same boat. I told Micheal that we are a couple weeks ahead. We have 15 treatments to go!! You 2 are in my thoughts daily.

Hi Seth,

My one suggestion that isn't a repitition of something already said is to encourage Michael to eat yogurt either by itself or mixed in with something--the kind of yogurt with active cultures. Those cultures in his mouth may help prevent thrush when his mouth starts to get dry.

I found very creamy soups, with yogurt, were about the lst thing I could eat before the mouth sores got so bad that everything was via tube.

Please keep posting and let us know how Michael is as time goes on--you are both in my thoughts (I know being te caregiver can be as hard as being the patient sometimes so don't forget to take some time for you in all this).