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Mick & Claire; Please share

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Mick & Claire;

Your blog describes your discovery of a smoothie receipe that has 485 to 550 calories in 2/3 of a cup? Can you share that with us here on the board. Others (myself included) were launched on this journey by physicians who told us that the PEG would not be needed. Any and all assistance would be appreciated.

Deb L.
Winding down week 2 of 8, and not even trying to count down yet.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Yes, I would like that receipe as well. I havent had surgery yet but I am getting prepared for everything. I bought some L-Glutamine, I read that this is good to take when having radiation. I guess you put the powder in shakes?
Mary

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

I'm revealing my ignorance here, but what is L-Glutamine powder and where do you find it? Is it a health food store item? Would it be on a supermarket shelf? I'm assuming it's available over the counter. Does it come in a box? Cannister? What does it look like?

Thanks for any information.

Deb

staceya's picture
staceya
Posts: 704
Joined: Jan 2010

I got some at a health food store.
I was instructed to make a paste of it and apply it to sore areas.
That bothered me, so I made a rinse out of it. It seemed to help, but I was kind of inconsistent...
Counting the weeks down with you!

Stacey
Done on 3/9. Doing MUCH better.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

It usually comes in a plastic container. it is a tasteless fine white powder. You normally take 1 Teaspoon per day but more is OK. I just mixed mine in a glass of water and used it as a 'Rinse and Swallow' (yes swallow it). It helps to heal your mouth and throat and also should help stop burning in the mouth from and liquids or food you take if you do suffer from the dreaded burning mouth during and post radiation.

It also will aid the rebuilding of muscle tissue if you have lost weight. I still take it but now throw the teaspoon in a drink or in my rice milk that I put on cereal in the mornings.

You would normally get it in a Health food store / Vitamin shop outlet.

It's good stuff.

Cheers
Scambuster

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi D,

I got some straight off of Amazon. I use a teaspoon 3 times a day between meals and it builds mass. And as scambuster says, it does help a little with burning. I heard about it here and really can't tell you if it is helping me at all.

Best,
Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Yes, I have a book that says you rinse and swallow the water with glutamine in it, says to do it every hour while having treatment. You make a bottle of it. Also says can be put in shakes. I ordered mine off Amazon but you can get it at a vitamen shop. I want to be ready for everything.
mary

tracietree's picture
tracietree
Posts: 3
Joined: Nov 2009

Hi everyone,
It's not a shake, but I ordered the Instant Breakfast VHC (very high calorie) for hubby. He can't drink it now(has the PEG now) but it would have been great. Vanilla swirl flavor, he said it tasted pretty good. 560 calories for an 8.45 oz can.

I googled it and found it at OJ Medical Supply.com but there are others, too.

Good luck!!

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

As regards my smoothie recipe, it changes constantly based on what Michael can tolerate. I will list a bunch of things that hopefully will help you. Given you are early in the process, you can probably tolerate a lot more now, but know that this will change over time. So starting with the basics, the protein mix I use is called Ultimate Meal. I did a lot of research and this is the most nutrient dense supplement on the market. It has no additives or junk added, so is pretty pure mix of just nurtients. 1/3 cup gives you 18g protein and 170 cals if you just mix with water. I was using Whey protein, but recently have eliminated all dairy as it just adds to the mucous mess.

So here is the basic recipe that I am using today:
1 heaped tablespoon ultimate meal (60 cals)
2 tabs extra virgin olive oil (240 cals)
1 heaped tabs organic smooth almond butter (approx 95 cals - depends on brand)
1/2 cup almond milk (30 cals)
1 tabs maple syrup (approx 70 cals - depends on brand)

Optional (things I used to add previously - not all at once necessarily!):
1/4 avocado (40 cals)
1/2 tub organic full fat yogart (55 cals - I was using Yo Baby Vanilla/Banana brand)
1/2 cup blueberries (approx 30 cals)
1/2 cup strawberries
1/2 cup cottage cheese
Organic apple juice

Michael is now down to the basics - I serve at room temp with a pretty runny consistency. Feel free to play around with ingredients and consistency to see what works best for you. There is probably something I am missing as my recipe seems to change daily. I used to add a lot of the above ingredients and get up to 800+ calories in about 16 oz, but today I try to focus on the max amount of calories in the smallest volume that he can tolerate.

The Ultimate Meal is pricey - but I feel it is worth it. I get mine at Whole Foods locally, but you can also buy on line at www.ultimatelife.com

Hope this information is useful.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi folks. I'm down to a crawl in this marathon. Today I cannot swallow, not even the lovely smoothies that Claire makes. We decided yesterday to have a feeding tube installed on Monday. Hopefully it's not too late. All the Drs say "don't worry it's not too late, you'll dio fine."

I knew better. It was here on a few posts back before treatment started. I wasn't going to be stupid. Well, my GI Dr, my rad onco, and med onco had more faith in my motivation that they should have. I was going to have the feeding tube installed but at the end of the day felt I dodn't need it. Huh? Dude your *entire* mucosa is going to get fried, and that's not going to impact you swallowing. Uh huh. Good luck with that. What a dumbass. I needed to listen closer here and stick to my gut which said better to have it than not.

Deb my advice, before you go buy any of that stuff and figure out the awesomest smoothie ever created, go get feeding tube. The constriction, not necessarily pain but yeah pain is there too, due to inflammation has closed down the food highway for repairs. Unless you're treatments are greatly less invasive than mine I would caution you to make sure you have a back up to the smoothie plan, one that is sure to work.

Claire is posting daily now on my website www.justwrite.us if you're interested. 5 more freaking days of this hell.

Weakly,

Mick

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

Hey Mick, at 5 days left the end of the tunnel is in sight. I remember at this time heading to the Cancer Center single purposely like a robot to complete this. I was to only have 2 chemos but the Onco decided a third was the best course. I was really let down at this news but knew I needed to do it. I would shuffle to radiation shivering and chilled, hit the drinking fountain for a rinse and spit and then clamp down under the mask. Each 1 completed was 1 less to do. I was down 35 lbs. by the end. Find whatever it is that will get you to the goal line and use it. You are tougher than you think. Do whatever is necessary. I'll be thinking of you this week. You will be amazed how much better you feel the 2 weeks following your treatment. Just get there. Take care and good luck.

Mike

P.S. Keep sipping water or whatever you can. When you are done you want to start working on getting your health back. Swallowing is king!

staceya's picture
staceya
Posts: 704
Joined: Jan 2010

Counting down the days with you!

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Sorry you have completely closed down. I know it has got to be tough to have to think of more hospital time after all you've been through already.

Ask the doctor about a PRG. It is radiology assisted in placement and they put a much smaller tube down your throat, hence less invasive, less pain.

I have used mine twice now and I know it will get used more. Stop beating yourself up man, all you did was take the advice of your doctors. Had my RO not advised me to get it, I would probably be where you are now.

Right now 5 is the magic number and you will be in the hospital, I guess, for a day or 2, and maybe they can make it easier for you to get through these last 5. Hang in there, and as always my thoughts are with you and Claire.

Best,
Steve

Fire34
Posts: 353
Joined: Feb 2010

Mick
Dont knock yourself out over the tube. I was 3 weeks, 30 rads in before I got mine. It was not that bad to have it put in, just make sure they knock you out all the way. Mine was done on an outpatient basis. One of the 2 weeks I got to go home. Good Luck Mick Hopes & Prayers
Dave

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Thinking of you Mick. you dont have many treatments left, you can do this!
Mary

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

my boyfriend had his tube installed after he was done with treatment. He had to admit that he needed help with food. He couldnt do it. His last 2 week treatments involved rads twice a day as well as the last two chemos. So he was whipped and he knew it. He has since had it removed. He still isnt eating solids, but liquid protein meal replacements and anything else liquid calorie like, is at least going down his throat. His throat forgot to swallow a little so he is trying to get it to remember. Whatever he tries to get down, hits his upper palat first and sometimes sticks there. so he has to keep with the swallowing, drinking water, etc to unstick it. But no shame in getting the tube now. You get it and then you dont have that added worry of losing more and more weight etc along with the other issues you have to worry about.

youre gonna be ok.....

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

You are almost at the end of the tunnel Mick, its been one hell of a dark ride but you are there close to the finish line my friend.

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