Hi everyone

Update on David -

He has 11 more Radiation treatments to go to complete a total of 30 rounds. As of late he's lost all taste and sense of smell which has him pretty down in the dumps - and he's lost quite a bit of weight. NO stomach tube though - so that is positive.

I'm asking for help from those who have been there. Please let us know what foods you were able to get down with ease and / or could taste. It would be greatly appreciated.

Thanks!!

-Philly

[quote=Philly]

- and he's lost quite a bit of weight. NO stomach tube though - so that is positive.




-Philly [/quote]

Not sure what the positive is....

I didn't have a Peg and it was very rough going but I did find Carnation Instant Breakfast VHC that has 560 cals in the same small 8 oz can so when drinking is difficult it's best to get the most cals for the oz consumed. I drank that stuff for a little over a year post Tx as the recovery is not much fun in the eating dept since it takes soooo long for the saliva and taste to return.

I AM STILL IN THAT STAGE. Anything you can imagine that he likes, that can be liquified, try it. I bought a ggod blender that has liquify speed on it and it is just about the main piece of equipment in he house. Tru poached egss, panckes with lots of butter and syrup , but watch the syrup isn't too sweet. The sugary things burn the tongue big time. Tell David to imagine a meal and then go for it. I threw a lot of good food away and gave a l;ot to my neighbors. Cream of wheat works as does Coco Wheats , and Oatmeal is good as long as it isn't loaded with surprises like hard little berries.

Geez, forgot to say buy Carnation VHC,, 560 calories to a can.

[quote=EzJim] I AM STILL IN THAT STAGE. Anything you can imagine that he likes, that can be liquified, try it. I bought a ggod blender that has liquify speed on it and it is just about the main piece of equipment in he house. Tru poached egss, panckes with lots of butter and syrup , but watch the syrup isn't too sweet. The sugary things burn the tongue big time. Tell David to imagine a meal and then go for it. I threw a lot of good food away and gave a l;ot to my neighbors. Cream of wheat works as does Coco Wheats , and Oatmeal is good as long as it isn't loaded with surprises like hard little berries. [/quote]

Thanks EZJim - great advice ;-) It does seem to take a lot of mental preparation for him to get ready to eat. Imagining a meal - and then going for it. I'll be sure to relay that ;-)

[quote=davidcpa][quote=Philly]

- and he's lost quite a bit of weight. NO stomach tube though - so that is positive.




-Philly [/quote]

Not sure what the positive is....

I didn't have a Peg and it was very rough going but I did find Carnation Instant Breakfast VHC that has 560 cals in the same small 8 oz can so when drinking is difficult it's best to get the most cals for the oz consumed. I drank that stuff for a little over a year post Tx as the recovery is not much fun in the eating dept since it takes soooo long for the saliva and taste to return. [/quote]

Thanks for sharing your experience and advice, David. [My] David is glad to not have the PEG. He hasn't lost enough weight for them to recommend one - and that is what is positive to us.

Thanks again for sharing about the Carnation VHS and your experience.

All the best,

-Philly

Philly,

Please be careful. W/ 11 treatments to go, the biggest weight loss is likely yet to come. The 2 weeks post treatment are unbelievable. My husband, who was also proud of not having a feeding tube, ended up within 2 pounds of medically needing one AFTER treatment. He made it through, but there was one week post treatment where whe had home health care provide IV hydration daily or he would have been hospitalized and in need of a tube. Those men and their pride. ;-)

I remember trying to cook anything that Dan thought would work. He had some odd combos...I made everything he requested and in the end threw a heck of a lot of it away. One thing that worked for a pretty long time was home made mac n cheese. It was a cooking light recipe, but I did everything possible to make it a cooking heavy one! If you think it might work, I'd be happy to send you the recipe.

Poached eggs worked for awhile too. Dan didn't like the liquefied food. He did do the Carnation VHC until it got too thick for him...by the time we diluted it, it was too much fluid. He had a lot of Boost and other liquid supplements. Once food stopped tasting good, he had an easier time switching to the supplements.

In a way, your husband is lucky that his sense of smell went away. My husband's didn't and it made eating (or trying to) very depressing to him.

On a good note, he's doing great now! He gained all his weight back and then some (which he didn't really need). :-)

Good Luck!!

Philly, looks like David and I are on similar paths. As of today, I have 9 sessions of radiation and one chemo left. I'm in quite a bit of pain. Got prescription for the patch today.

So far, I lost about 5 lbs since the start of radiation. I gave up on normal, even blended foods as of middle of last week and am just doing ensure plus, clear chicken broth and water, none of which are fun to drink mostly because it stings my tongue. My nutritionist is fine with that as long as I get enough calories and stay hydrated.

OK thanks for the insight everyone.

I just ordered him a case of the Carnation Instant Breakfast from CVS. Roughly $24 / case. Does that sound about right?

Thanks again,

-Philly

Hi Philly,
If you found Carnation VHC that cheap, you were very lucky. The cheapest I have found online is about $1.30 per can. I buy 4 cases at a time and try to get free shipping when I can or a flat rate shipping. Ron has no prescription insurance so his insurance company won't pay for the VHC, even though he NEEDS it to LIVE. Sorry, side rant:)
All my best,
Lori

Philly, that is very cheap. Where did you order it from? I have been planning my meals by tyhinking what might work for well over a year 1/2. I still am dowen 60 lbs and had lost 70. It's toughbut he will do it with you behind him.

I haven't started radiation as yet, but here are some ideas that were given to me. First, you still need protein so friends suggested a smoothie using tofu, berries, and milk/ice cream, etc. Also, in a health food store and/or Whole Foods you can buy a Whey Protein powder. Mix it with milk, and it's a great way to have your protein mix.

Also, make some cream of ...brocoli and cheese, spinach, carrot soups.

If you want the tofu smooth recipe, let me know.

Sandy S.

Ensure, Boost, etc, got very boring for me (even without my taste buds). So try to change it up, it really does improve you mood.

[quote=EzJim]Philly, that is very cheap. Where did you order it from? I have been planning my meals by tyhinking what might work for well over a year 1/2. I still am dowen 60 lbs and had lost 70. It's toughbut he will do it with you behind him. [/quote]

I called the local CVS Pharmacy and had them order item #3606563. It will be in and ready for pickup by 10am, as long as you get your order in before 7pm the previous day.

Hope this helps!

All the best,

-Philly

Thank you Philly.

I ate lots of eggs, mashed potatoes with gravy and finely ground beef, soups, yogurt. Everyone is different, but that worked for me all the way through.

Best of luck!

Philly,

MAKE SURE THEY UNDERSTAND IT"S VHC (560 calories) not the other 10 or so types of CIB. It took me 3 tries with Walgreens before they got my order correct and $24 is very cheap, in fact the cheapest I've seen. I paid $30 3 years ago and that was cheap then.

I too was very proud and happy I didn't let them put a PEG tube in me for, to me, it was just another slap in my face to say I was sick, very sick, and I didn't want to be sick!! I was also (still am) a very stubborn patient and didn't like being told what was best for me. That said, that mentality cost me a lot of grief as it got near impossible to swallow which led to a whole host of other problems like dehydration, weight loss, nausea, constipation, and on and on. The only benefit I MAY HAVE as a result of not having the PEG is that I have zero swallowing issues and that's not a foregone conclusion.

His condition, if like the majority of us, may very well get far worse than it is right now and may last weeks past the end of his Tx so if it really gets rough at least consider the nasogastric tube that's inserted through the nose directly into the stomach in a non surgical procedure.

THe local rite aid manager di get me 2 cases while we waited for my Ins to say yes or no. He only charged me $24 at that time.

Update ** the charge was $28.00 for the case - normally $42.00 / case.

Philly, best to your husband and to you too Jenka as you head toward crossing the finish line of treatments!

[quote=SandySt.]I haven't started radiation as yet, but here are some ideas that were given to me. First, you still need protein so friends suggested a smoothie using tofu, berries, and milk/ice cream, etc. Also, in a health food store and/or Whole Foods you can buy a Whey Protein powder. Mix it with milk, and it's a great way to have your protein mix.

Also, make some cream of ...brocoli and cheese, spinach, carrot soups.

If you want the tofu smooth recipe, let me know.

Sandy S.

Ensure, Boost, etc, got very boring for me (even without my taste buds). So try to change it up, it really does improve you mood. [/quote]

Sandy, I would stay away from berries as they are acidic and can cause further irritation to mucosa.

THat $28 sure beats buying ensure for the same money. I buy Sam's club memers mark , it's ensure under a different name , but not near as good as VHC.. For members mark I pay 19 now

Jenka: My post cause a little misunderstanding. I meant berries in a smoothie. I saw an interesting recipe using tofu, berries and other ingredients. However, my posts implies each item individually.

Thanks for calling that to my attention.
Sandy S.

I know what you are going through. I had 35 radiation treatments. My problem is that I stop eating all together. I tried the drinks and it would take me 2 hours to drink 8 oz of water. I could not taste food. In one month I drop 50 pounds and they could not put in a feeding tube since I was at 325 pounds. So they they ended up giving me IV feedings. I was on IV feeding for 5 months until I forced my self to eat (that was 4 months after treatment.) I still have my good days and bad days with eating.

Please keep you head up and things will get better.

Then you must still weigh in at 275 lbs. I think you need what I have been doing and get an exercise regime going. It will make you feel better and your body tougher. I am doing it to put weight on after going down to 147 from 220. In the 160 range right now and at a stand still but feel much more energetic. Good luck and go for it.

thanks for the advice EzJim... I drop down to 240 after I stop the IV feedings and right not I go from 250 to 255. Nothing higher or lower.

Good job you are doing then Ivredrock. You are just a big man I bet.

Philly, we are almost at the end. Tomorrow is my last radiation, which means that you guys have three more left.

I am getting conflicting messages - my RO says that a week after tomorrow I should be feeling much much better, his nurse is saying that two-three weeks from tomorrow I should slowly start feeling better. I'm just looking forward to some sort of positive trend.

Jenka, congrats on finishing your treatments. It will usually take a couple more weeks til you feel a little better. It will take a long time til you are back toyour old self. Radiation keeps working even after treatments are finished. So very soon you will begin to feel more normal again.

Jenka,

Believe me my RO or his nurse were NEVER as in NEVER correct about how I was going to feel!!! As we all know you will recover when you will recover but for me my most intense period was the 3 weeks post Tx and it was like walking out of a dark tunnel as one day I woke up and I just knew the worst was over.

I hope you have a quick recovery but be prepared. My husband was finished 7 weeks (35 treatments) of IMRT and 7 weeks of Cisplatin on April 15th. He still can't talk or swallow. I know everyone recovers at a different rate but the past few weeks have been very difficult. Before all this started he was around 5' 9" tall and weighed 173 lbs. He currently weighs 143 lbs. I don't know how he would have survived without the PEG. I can't wait until he starts eating again.

I got my PEG before my treatments began because I didn't have much to lose. I was a little freaked out at first and it took about a week to get used to it physically. I didn't actually start using it until about 3 weeks into the treatments. But I quickly became accustomed. It was nowhere near as difficult or disturbing as I'd feared it would be. A week ago I finished 7 weeks of radiation and chemo and ended up maintaining my weight throughout, using mostly Carnation VHC. In fact, I even gained a pound or two! My doc told me point blank that without the tube I wouldn't have made it. I'm very happy that I had it. I'm still using it as I slowly start to feel better. But I can't wait till I can go back to eating by mouth.

I wasn't really given a choice when it came to having a PEG. They just had me have it inserted. I'm glad they did because I lost over 40 lbs and that was with the PEG and all of the feedings. Without it I wouldn't have been able to eat so I would have ended up with one anyway, I think. My biggest problem throughout the tx was that darn Amopostine stuff. I was sicker than a dog and nothing including water was palable. My one mistake was not forcing myself to swallow some liquid everyday so it took a little while to get going again, but I did. If I had to do it over that would be the one thing I'd change. Oh yeah, and I'd remember to ask for some medical marijuana...............I totally forgot about that stuff while in TX and was kicking myself later. LOLOLOL

They gave me some very expensive marijuana pills called Marinol (?) which I thought hey I'll get high and it will increase my appetite so all will be OK. Those pills didn't do a thing for me, either way, except put a dent in my pocketbook. Heck I think the're still in the refrig.

I have been given just about every pain perscription there is and if there was an adsdiction connected to them, i never got them filled and if I did, I usually flushed the pills or put them in the trash. But unlike most people. I can fight pain mentally and my mind gets used to it. I still have my last Fentanyl patches, all but 2 in a drwer and I am trashing them today. Mind over matter works for me.

I should add that I have had so many surgeries and add the 12 kidney stones, I have experienced some heavy pain thru life. It's been a part of my life since the 60S.

Silly martin tried to fight the tube. But couldn't. We don't have carnation breakfast here. But for a long time he could eat liquid porridge with maple syrup, rice pudding, custard, and creme caramel. Then it all started tasting of salt. He kept thinking I was sneaking in some salt in his food. That's when he had to go for the tube because he weighed the same as me (9 stones for 6ft2).
It's not pleasant to put in or take out (I had to look away while I was holding his hand). But once it was in in he had no trouble.

How much is a stone?

Whatever you want to pay for it...

Fourteen pounds.

David shame on you after all this time you still haven't learnt any "english"

16ozs = 1LB 14 LBS = 1 stone 2.2LBS = 1kg

I was wondering about stones too. LOL Hell By my stream I have a lot of them. Liz,, could you make that a little easier for us foreigners? LOL 16 OZ= 1 LB 14Lbs ??= 1 stone 2.2 lbs= 1 KG LOL I am still lost only more so now. Come on sweet lady and make it easier

I don't know about David, but one of the very first things I learned in college was how much a "kilo" weighed. Even Arlo Guthrie, son of the all american folk singer woodie sang about
[quote]Coming into Los Angeles, bringing in a couple of "ki's", don't touch my bags if you please, Mister Customs Man[/quote]
Back in the 60's all the good hashish came from London so you had to learn the metric system. One Stone was not used for weights in the counterculture since it involved too much math and decimals (example one stone would be 6.35029 kg) instead it was a measure of consumption,
Ah, my misspent youth - glorious
charm

Man a 14 pound stone is not the typical stone.

Who came up with that one?

Was never taught about your stones in any school I ever attended.

sorry Jim lol.

The british system of weight is as follows

16 ounces equals 1 pound
14 pounds equals 1 stone which is what we are weighed in.When rob was diagnosed he was 15 stone,and when he died he was about 9 stone.
Now we are a part of the European community,the A.. H.... in brussels are trying to get us to convert to metric which means using Kilogrammes..It is now illegal to sell food in pounds and ounces and petrol in gallons,or to use feet and inches for distance and height,but there is a hardcore of the old school who refuse to conform to this crap.I will always be 5 foot 6 inches tall and weigh**stones,and i will always buy my potatoes in pounds lol.

You have me laughing out loud here Liz. I hope the neighbors didn't hear me. Might have the funny farm wagon with attendants at my door if they did. LOL

Notice I didn't mention the weigh**stones. LOL You my buddy lady.

So Cookey.....how many stones did your elephant weight?

Get a PEG. I have one which I didn't use until week 5 (out of 7) of radiation. I still have lost 25 pounds. I continued to swallow water. I am now 3 weeks out of radiation and starting to eat and my swallowing is working well. Really, a PEG is great idea and makes eating one less thing to worry about.