Hi All
Alex and I have had a few dramas with feeding and the poor bugger has gone from naturally skinny to positively emaciated! and all this before chemo+rad begins.
He should be 75kgs (165lbs) for his height and by diagnosis, was already down to 60kgs (130lbs). A PEG was installed within the week and we were given a product called TwoCal by the hospital with instructions to take 3 tins per day minimum, 4 if Alex became unable to eat at all. During his initial treatment of 3 cycles of chemo (taxotere, 5FU, cisplatin)we had daily slanging matches about his refusal to eat (or more correctly "nourish himself"). Alex saw it as food and treated it the way he always did - something to do when he felt like it and I saw it as "treatment" and not to be skipped. I naggede him, he ignored me and his weight dropped below 50kgs. The doctor scared the c*** out of him by telling him his treatment would be suspended until he gained 5-10 kgs (11-22lbs)and for a full 24 hours he was really good. The next 24 hours was spent congratulating himself and he slid back into old habits. So I dragged him kicking and screaming off to hospital to have him admitted for "starvation". Hospital was fantastic after initially slapping me for presenting him at the Emergency dept but they DID admit him after talking to the oncologist and the dietician was called in to consult. She put Alex on Nutrison concentrate which is 1000 calories per 500mL and prescribed 2 bags per day which is administered via pump overnight for around 8-12 hours (we have it down to 8 hours now with a 2am alarm to change bags).
He gained 5kgs in 7 days so we were very happy and Alex kept to schedule with his chemo. Now we are in the hiatus between chemo and chemo+radio and his weight has not shifted in ages. He is still horribly underweight (57kgs) and has actually only gained a further 2 or 3 kilos since the initial weight gain. Once again, I think he is cheating somehow but can't figure out how. His attitude has slipped (again) and the same old excuses are being trotted out - he is delaying starting the feed, complaining his PEG hurts, saying he feels sick (no evidence of this being true), saying in the middle of the night that he will do it first thing in the morning which mucks up the next cycle as he gets later and later etc. Once again, we are fighting daily over this.

Help please from people who have been through this and can give me some insight into what is going on in his head and what am i failing to comprehend? I hate being the wicked witch of the west and blame him for forcing me to act this way (pathetic and selfish, I know but can't stop it). Who stole the love of my life and put this little boy in his place?

Now to my more practial questions
What experience do others have with Nutrison or TwoCal?
In Australia the Nutrison is costing me $650 per month. Is there an assistance scheme that I don't know about that can off set costs?
Any tips or tricks or good stories with Nutrison that might motivate Alex to keep going?
I keep hearing about Ensure Plus but it is only 350 cals per serve - should we be trying this on top of everything?
What are the pros and cons of each of these products?
Karen
PS sorry about the length - I only seem to be able to do epics

You should be using the prescription formulas. Do not start using over the counter things. People who have not had a feeding tube may respond but they do not know!!! Ask your hospitals nutritionist for help. They usually have a stockpile of formula lying around from patients who no longer use it or from the pharmacutical companies trying to get them to push their brand. My nutritionist gave me several cases of formula. Anyway...huge difference between over the counter and prescription kind with it being a complete 'food' with all the nutrients in it.

One big difference between brands is the calorie content. Go for the highest calories. I used two-cal for over a year with good results. I also added a can of carnation very high calorie. The carnation VHC is over 500 calories per can but it is also mainly sugar. Go towards the highest calorie content per can of the prescription stuff. Try to get 3000 calories in him per day and he will feel 100% better. Dont forget to push the water too, at least 48 oz. per day. Sorry dont know the metric conversion but think of it as at least 4 regular sized cans of soda.

As far as Alex's pain and complaining about the feeding hurting and feeling sick. It is a possiblity. Dont just dismiss it as nothing. Have his gastro doc do a CT or MRI to check its placement. I had horrible pain with my tube for a couple weeks. It was so bad it made me cry. Turns out after much begging, they finally scanned the tube and it was dislodged. It ended up being attached to the wall of my abdomin. There are 2 other OCF members that also suffered this agony. Please get it checked.

If he is nasueous, it doesnt mean he has to throw up to feel like that. Fast isnt the best thing to be when it comes to the feedings. Slow down the rate to a crawl of 40 and add extra water. Yes, it will run forever but after a few days, start pushing it faster by an extra 20. Soon he will be back at a decent speed like 160-180 or so and it wont take so long. When the pump runs too fast think of it as trying to force a waterfall of formula into his stomach instead of a normal amount. Of course he will feel sick, his stomach cant process so much at a time. Ive had my own feeding tube for about 2 1/2 years so I do know what he is going thru. I am positive that if you take my advice and do what I recommended, he will feel better right away.

Since its not you as the patient, take a deep breath before you open your mouth and say something that isnt helpful. Being a caregiver is a very very difficult job. Thats why their is a seperate tab for caregivers. There is no possible way for you to completely understand how awful it is to be going thru cancer treatments and how upsetting it is when you feel so bad. It would do you some good to remember to take time for yourself too.

Please keep posting, it helps to vent sometimes. Best of luck with everything.

Don't know if it's available down under but here I always recommend Carnation Instant Breakfast VHC, which stand for "very high calories". Try the internet. It has 560 cals in an 8 oz can.

IMO he needs 3000 cals a day and separately at least 48 ozs of water. Even with that he will probably loose weight as this Tx is a bugger as you strange talking people would say. lol

As his Caregiver, toughest job in the world, you must treat him like a kid and make sure you track his daily intake. Since I am an expert on not getting enough calories and water during Tx I can tell you REALLY BAD THINGS WILL HAPPEN TO HIM if he doesn't get the necessary calories and water in him EACH and EVERY day from now until at least a month POST TX.

Your nutritionist at the hospital should organise all the cans of nutrition and equipment that is required for the PEG at no cost. They will then continue to deliver supplies to your door regularly at no cost whatsoever.

Ensure is the usual supplement supplied in Australia. Unfortunately Carnation VHC that David mentioned is not available in Australia and Nestle (who manufacture it) are not aware if and when it will be available here.

The medical team should have allocated a nutritionist to monitor Alex's situation. If not contact the hospital and ask to speak to the dietician/nutritionist department and they will organise everything for you immediately.

Karen

Christine, thank you for your practical advice. At the risk of sounding defensive - I DO know that Love of Life is going through hell, more than I can imagine (although 4 days waiting to die when I was 27 gives me some small inkling of the paralysing dread that sweeps over without warning). Although I can see his pain and nausea coming (ex nurse working with non-verbal patients), I can't see that low level wretchedness that I know he is living with all the time sitting in the background just waiting to come out and wreak havoc. I also know that my own previous experience was only 4 days and cannot compare with weeks and months of waking up every day to pills, treatment, doctors, fatigue, fear and well meaning but bullying girlfriends. However, this well meaning but bullying girlfriend will deal with the practical stuff, stroke him when he reverts to 6 years old and forgive myself when I forget to bite my tongue at times.

Thank you so much for the advice re the nutrition products. Learned quickly through research that there is little available over the counter that fits our needs and it hadn't occurred to me to ask if the hospital had a stash - even though Alex and I discussed donating our own left over TwoCal to the next person (Alex can't tolerate the Two Cal, and the smell of Vanilla will forever make us both sick :/).

We have our "group hug" with the team tomorrow afternoon, so will tell them about his PEG. I am concerned because Alex is on so much pain medication, the extent of the pain (and potentially a real problem) may be masked. Scan is a good idea - they can do full body instead of just his head this week I think.

thanks again - I'm sure there are other gems but am trying not to do the epic again

thanks David I am a particularly strange talking person and have to be very careful with my words when talking to people Down Under, let alone globally.

You have given me some really great tips re the feeding - Alex is not ready for some of your solutions yet (no chance of getting 8oz of goo down him at this point unless it is mixed with beer)

I will ask though, what really bad things happen to those who don't eat or drink enough? Love of Life is an engineer and responds to facts not feelings. If I can tell him his risks, he will do the assessment and make the decision if the risk (nasty side effect) outweighs the benefit (opportunity to procrastinate). This is how he got his PEG one week after diagnosis and 12 weeks before radiation. It also helped that I was so enthusiastic about it and not "weirded out").

I have already told him you said in another thread that 3000 calories is the target and he responded positively saying that was what he was aiming for. Hmmf, this from the man who has consumed the extra 250cal he was instructed to by the dietician to take him up to 2250cals once maybe twice since he got home last Thursday. However, I have hope - you are a male, you know his issues, you are currently in the position he hopes to be in the future (minus 100 miles of torture on a bike)and he might listen to you as an expert. And best of all, you just gave him permission to keep being a kid

Hi Karen
Alex and I are so special we have THREE dieticians/nutritionists, and not one of them have mentioned an ability to organise anything at no cost. Wonder if this has something to do with our different Health departments, or maybe it is an age/pension thing. The Two Cal was certainly very cheap (about $1.60 per day) but definitely not free. The Nutrison is another kettle of fish and could run us bankrupt if we hadn't both just given up smoking (fanfare now please). Lovely Louise (queen of the dieticians), put us in touch with the Nutricia people who loaned us a free pump, but the feeds plus tubing bits are over $650 per month for 2000 calories a day. Louise knows we are in a financial bind (who isn't in this situation)so surely she would have told us if no cost was an option? Will report back

Thanks again, Karen

Having said that, the group hug is on tomorrow, I will ask her. And maybe hit up our soon to be new Social Worker too. I will also see if she knows anyone in Victoria in her job that can enlighten us on the differences between states. I work with doctors specialising in treating HIV and I KNOW that there is one clinic in Melbourne which charges nothing for prescriptions whilst there are none in NSW (or the rest of Australia as far as I can remember). Maybe this is a similar thing.

Karen

I'm sure the same benefits apply in NSW as Victoria. Another OCF member WendyG from NSW was also supplied with nutrition and equipment for her husband's PEG feeding tube at no cost delivered to her door.

Definitely worth asking about because I wasn't receiving a pension and it was still organised by the nutritionist/ dietician. All my medications, lotions and potions that were needed following my surgeries and when I was receiving radiotherapy and chemotherapy were also supplied at no cost.

Karen

[quote=klo]The Nutrison is another kettle of fish and could run us bankrupt if we hadn't both just given up smoking (fanfare now please). [/quote]
Hey klo Karen...you know I cannot comment on any of the feeding issues you are having with Alex because that was not my TX.
I would like to however give you that big fanfare and say congratulations to the smoke free
Well done both of you...talk soon.
Would also like to thank my OCF family for the responses to date..You are all bonza mates
Love
Gabriele

Hi Karen

Hopefully I can offer some helpful advise. Steve pre-diagnosis weighed roughly about 66kg. He stands 181cm tall. Very lean all of his life and never, ever a big eater. When he was diagnosed he was 60kg. The lowest he got during treatment was 51kg fully clothed in winter gear and boots. I still have visions of him walking around the house being excrutiatingly thin. A memory I don't think I will ever forget. During his treatment he had cisplatin 3 times. After he had cisplatin you could guarantee he would lose about 5kg in that first week. So we would spend the next few weeks getting him to put it back on again so he had it to lose all over again when chemo time came around. Boy was it hard work. The nausea he had after chemo knocked him big time. He never threw up but food of any kind (liquid or solid) just turned his stomach. There would always be a few nights following chemo that we would have to drop his feeds by a couple of tins.

Steve was on 2cal. Our schedule was to run the pump overnight while he slept and to try to get 6 tins into him. We didn't start straight away at 6 tins but built up to them bit by bit. It was time consuming so often he would curl up on the lounge in the afternoon to watch tv and I would get it all set up and whirring away. Then we'd just transfer it to the bedroom when he went to bed. Worked better for us to do it overnight because to have Steve forced to sit there for a feed of a day time was sheer torture to him. When he slept he didn't care. After chemo he'd drop back to about 4 tins for a bit, slower rate, until he felt a bit better. Also to try and add extra calories to his day he'd eat icecream. He seemed to live on just 2cal, icecream and apple juice for weeks. But it worked to get the weight on so it was worth it. When he was wanting to do nothing but sleep after chemo I'd hook up the pump with a bag of water and let it run while he slept. Keeping him well hydrated during treatment seemed to help with the nausea a bit.

Before Steve started treatment he was purely on a liquid diet. He was in too much pain to eat. The hospital put us onto Sustagen Hospital Grade and our dietician advised that by him having 3 milk shakes made from this each day it was the same nutritionally as 3 meals. When he was diagnosed we were living in Qld and we had to buy the sustagen. In NSW our dietician advised us that Sustagen Hospital Grade is free to head and neck patients so may be something for you to look into for Alex also. We stopped using it during treatment but before and still now Steve has it daily. The best thing is you can add to it. I put icecream into it, full cream milk etc. There were stages where I was even adding cream, custard, yoghurt, you name it. They were so good that when Steve went into hospital for a stay he refused the sustagen the hospital gave him because it just didn't taste as good as mine.

With the 2cal we had to pay for it but only a small amount. I think it cost us about $100 initially to set it up and then we payed a reduced amount. I can't remember exactly but I think 4 cartons (96 cans) of the stuff used to cost around $50 including bags for the pump. Our dietician refered us to this scheme and organised all of the paperwork for us. I can't remember the name of the service but I'll have a look tomorrow to see what the name of it was and let you know.

Anyway I hope this info helps. It's a tough road both you and Alex. Steve is very much not into food and I pretty much had to take control of that side of things. If I left it up to him setting up the pump and 2cal etc he would have had half the amount I think. There were many moments when we discussed (butted heads) over the amount of 2cal he was having. Sometimes I would step back and other times I wouldn't. But sometimes he just had to learn things the hard way. He's not a child so I would just say my peace then leave it at that. Sure enough he'd quickly come around to my way of thinking (most of the time, but not all lol).

As for the weight issue. We are 10 months out of treatment and still Steve hovers around the 58kg mark. No matter what we do he just can't seem to put on weight. His dietician told us that for some reason radiation treatment does something to your metabolism and it's very common for a person to always have problems keeping weight on. For Steve one missed meal usually spells 1kg lost in weight. Even now though he still has days where he gives me grief about eating. He knows he has to but I think a year of being told eat now, drink now etc just gets a bit much some days. If I'm not here to do make him lunch he forgets too. He calls it chemo brain He just doesn't get hungry. Never has really so trying to change a lifetime of habit of not eating much is incredibly hard and a constant uphill battle.

Anyway sorry for writting a novel but I hope it helps. Take care Karen, of yourself as well as Alex.

Wendy

Oh yeah, one other thing. If you are doing night feeds I strongly recommend a mattress protector that has some kind of water proof thing in it. Steve used to roll over of a night and pull his connection to the pump out in his sleep. 2cal in the bed was a common occurance. Sure can wreck your mattress too.

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