Karen, TwoCal was too rich for my husband. The nutritionist started him on it since he lost 12 lbs. the 1st week of treatment but it was way more than he could stand. It made him sick. After many issues with nausea I asked that they change his formula to Jevity, which I learned about from this forum. That change plus the slow overnight pump feedings made a huge difference. He is 11 weeks post tx and continues to use Jevity 1.2 and 1.5.

Now about your significant other not wanting to eat -- patience and understanding are key here. Jim and I have been married 29 years and I had never seen him refuse food, and I'd also never known him to throw up, but this treatment made him do both! It is strong stuff so try to hang in there and keep encouraging him and he will cooperate as best he can I feel sure.

P.S. Insurance covers the cost for all his nutrition needs since the doctor ordered it.

Hi Karen, found the name of the scheme we were under for assistance with Steve's supplies. It's called Program of Appliances for Disabled People (PADP). It's a government funded scheme to aid with such things as Enteral Nutrition Consumables (ie 2cal etc). These guys really helped to drop the cost of all of this for us and delivered it to our door. Your dietician should be able to get the ball rolling for you in regards to this. Ours filled out paperwork and got this all organised for us. All I had to do was sign the paperwork pay the initial $100 set up. After that I would just ring and order, then pay a reduced amount for what we needed. Made a huge difference. Hope this helps.

Also we weren't offered anything other than 2cal and sustagen. We pick up sometimes 6 cans at a time of sustagen for free from our dietician which you guys should also be entitled to. 2cal worked extremely well for Steve's weight gain while he was on it. Not sure what others are available here in Australia.

Your are a legend Wendy ..great information..thanks

Thank you everyone,
Our monthly meeting with all the team was last Tuesday and I asked about all of the things that others have highlighted for me. Alex, not unexpectedly, decided that his PEG wasn't really giving him a hard time and that scanning would not be necessary. This happens with pain as well - when it is he and I, he lists his symptoms and we discuss our options. If none of the possible solutions work, we agree to discuss it with doctor. The second I bring it up, Alex minimises the problem ("I don't like taking drugs doc" or "not too much pain doc" grrr). The dietician knows what he is like and immediately looked to me to see if I agreed. A shrug from me and Louise (bless her) decided to drop it until the next time.

Here is what I found out regarding the feeding.
Victorian hospitals do things differently and hospitals have a budget for such things (this happens in my area of specialty with HIV patients too)
Two cal is on the "very cheap" list so we can get it for a very small amount of money through the HENS programme which is an extension of what used to be called the PADP
Nutrison is not on this list in NSW (though might be in other states) so we have two choices - go back to TwoCal which Alex hates or continue with Nutrison and go broke. At the moment we are going broke as Alex refuses to entertain the thought of TwoCal.
We have discovered that TwoCAl can be run with a pump (thanks Karen and Wendy) which would slow the feeding down and may be more tolerable for Alex. I need to get him used to the idea but Louise has a spare pump waiting in the wings if I manage to convince him to give it another go.
I need to start lobbying for Nutrison to be put on the enteral feeding list by the federal or state government or Area Health Board (not sure but am networking and doing the research now) to get it subsidised for ALL patients regardless of which state or hospital they are being treated in.

DebandJim mentioned Jevity so I looked it up it but does not have the calories we need in the small volumes Alex will tolerate. Alex is not insured so none of this can be claimed either, and I suspect Jevity is another product that is not on THE LIST.

Karen
PS for the information of our US friends, the Australian Health system is similar to the UK and every Australian resident is entitled to free healthcare in hospitals and most medicines are subsidised by the government who charge a copayment of $5.60 per script for pensioners /unemployed/disabled and $33 for those of us with jobs. This means that health insurance is not offered as part of the work package and it is not uncommon for Australians to be uninsured. Those who are uninsured, need to buy medicines that are on THE LIST (my terminology not the government's)

Hi Karen

If it helps any Steve hated the 2cal also. Because of the problems he had with his peg leaking everytime he drank the 2cal it came out of the hole in his stomach. So in his mind the smell of the 2cal as he drank it smelt like what was coming out of his stomach. So getting him to drink it after all of this was impossible. We also had issue's getting him to agree to the pump as well. In the end while he was in hospital we had a discussion with the dietician and agreed to take it home on a trial basis. At home it still was a no go until after Steve had done a course of cisplatin. Then he didn't care. He felt so sick and just wanted to sleep so I was able to convince him that we give the pump a try so he could sleep and neither of us had to worry about his hydration or nutrition. Worked a treat and we used it every day after that. Because it was going straight into his stomach (below where the leak was) he couldn't smell it or taste it. So 2cal became a lot easier after that. But still to this day he would not drink it. Hates the stuff.

Steve had a checkup yesterday and I'm glad to say all going well. But like you we had discussed things before hand. Things I was concerned about. But when I brought them up in front of the doctor I was suddenly over reacting (not specifically said but just the words to the doctor from Steve and the body language said it all). So so frustrating. But I said my peace and at least I know I've done the right thing. Not much more we can do other than raise our concerns and hope that the doctor's can see through the I'm Ok's or the I don't like drugs. Normally they do.

Great work on the research by the way. Take care.
Wendy

[quote=WendyG]

Steve had a checkup yesterday and I'm glad to say all going well. But like you we had discussed things before hand. Things I was concerned about. But when I brought them up in front of the doctor I was suddenly over reacting (not specifically said but just the words to the doctor from Steve and the body language said it all). [/quote]

LOL Wendy

Alex waves me off (like a backward royal wave) and yes, the non verbal accusation of being hysterical or over-reactive is very plain. The good news is that every single female in the room sees it for what it is and even the less attentive men catch on quickly.

Karen

Klo
While the party line is 3,000 calories a day, my CCC RO noted that the bulk of his patients did okay on 2,000 which is about all I could manage during TX. It's not optimal, and the more calories the better, but since Alex is unlikely to change, I thought you might like to know that it's not the end of the world if he doesn't make the 3K a day.
Since he does have a PEG, don't be too dismissive of mixing in a little beer, although I found the carbonation troublesome after a while so I just put wine down my PEG tube. It's a combo of both calories and pain relief. Check with your doctors, but mine at the CCC had no problem as long as I did not drink any alcohol but just put it down the PEG.
Charm

Interesting idea re the beer Charm,

I thought I was joking but maybe not ... We have a phrase in Oz that refers to how beer affects one's bowels. It is called the AGB (after grog bog) - this could be a distinct advantage as well as adding calories and improving mood. Although right now, he is a happy little Vegemite (another Oz expression) and is practically bouncing around the place with no treatment scheduled until July 12.

You are right, there is no chance of 3000 calories long term although right now between therapies (chemo and chemo/rad) he is positively gorging! Ok I might be exaggerating slightly . I reckon a whole 200 calories went down his throat yesterday in single nibbles/slurps/sucks of a dozen different foods but every day things are getting better and we have 3 weeks to improve further. I have high hopes of going over the 60kg (130lbs) mark in the next few days and I can feel meat when I squeeze his leg.
KLo