Seth just made me some crushed ice chips, and I'm able to slowly nibble on this.

It tastes and looks like snow...(thank goodness it's not yellow

Hopefully, I can get some hydration cause I really REALLY dont want to go to the ED for another fricken IV!

Thanks for all the advice and inspiration to everyone on here!!!!!!

Not necessarily. Remember you are at the absolute worse point for chemo-induced nausea right now. What isn't working well at controlling nausea now might work better in the next few days (though I have to say they also tried Reglan with me and it didn't do much good).

Remember there's a good bit of experimenting with the combo. that works for you that may have to be done. I am sure those chemo folks have some other ideas up their sleeve if what you are on now doesn't work well. And do try teh Ativan but be sure you have taken it at least an hour and 1/2 ahead of time to get the full effect.

Hang in there Michael--you know you can come here and whine anytime and you'll be heard by people who have been there too. You aren't alone in this.

Nelie

oops.. you slipped another post in there. "not necessarily was in repsonse to "the worst is yet to come".

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