hello everyone! I have reached about the half way point in chemo and radiation. My blood work with the chemo has astonished my rn's Perfect readings so far. I wish I could eat how ever. even water does not taste right, My mouth is really burnt up and using the right washes for numbing and dr gave me liquid lortab but after a couple of weeks not working as it once did so i dont know whats next or available she also has me on JEVITY 1.5 my supplement for my feeding tube. I lost weight to 118 and well yesterday the scale tipped at 120 so gained a couple. fighting with insurance company for my Jevity, it is expensive but dr wants me on it. I should not have to go on worrying about my next meal but this is what is happening they wait till the last second to approve wich is really uncalled for. starting to lose my hair now but over all in good spirits. tell me out there that I will one day eat my good gumbos and food we took for granted with our embelished taste buds I want them back! keeping you guys posted and yea go SAINTS!

YES! you will eat most of that good food you crave.......in time. There is a light at the end of this tunnel that is not another train coming. At almost 8 mos post treatment I can eat most things and for the most part can enjoy the taste. And it is enough to make me feel great about food again. So keep up those good spirits. We are all on your side cheering.

I'm three months out and had a nice steak for dinner last night.

Kelly

Don, glad you are doing so well. Its always inspiring to others going thru treatment to see someone who is having an easier time of it. Although its never an easy task getting thru this. You will eat agin, it might be a while but you will get there. If you are able to keep eating something, soup or yogurt, choc. pudding with whipped cream is good. Make sure no matter how difficult it gets to keep drinking water daily. Also stretch your mouth open wide several times per day to avoid worse problems later.

You can order carnation VHC thru the Amazon tab on here. Its 560 calories per can. Its so much cheaper than prescription formulas. I use it in my peg with a can of water and then a can of formula. Whats the Jevity? About 200 calories? This will help you to keep the weight on....2 cans of Carnation VHC and 2 cans of Jevity would do the trick, maybe even 3 or 4 cans Carnation VHC for you. Talk it over with your doc or nutritionist. Keep those calories up to about 3000 per day to keep your weight on.

It took me a bit longer (about 18 mo's) til I was able to eat anything more than soup and fruit smoothies and, of course, Ensure Plus, but that was largely due to a terrible yeast infection in my mouth that affected the taste of real food. Now I'm mostly eating normally (Lots of gravy and mashed potatoes help)and I can tell you, after all that time, eating is just awesome. It just takes lots of patience and keep trying things every now and then and 1 day you will be surprised that something actually tastes good. For me that surprise came in the form of won ton soup from the Chinese place around the corner. I completely expected it to taste awful but gave it a try. That was a real turning point. You'll get there in time. Congrats on hitting the 1/2 way point.

Kelly,

That's great.

the insurance companies make this process so much worse.
i had to freak out on ours, letting them know that they could give me the stuff to give him or they could pay for him to finish his treatment in the hospital...i had cases of jevity, a pump, syringes, and feeding bags delivered to our home within 2 hours.
ask ur MO about this. they should be able to help, too. maybe they could make the call for u.

glad to see treatment is going fairly well. 1/2 way!!!

hello Christine thanks for the response..you are so sweet! jevity is made by abbott same people as ensure. It is a formula that is high protein nutrition with fiber and has prebiotics to maintain and restore damaged gut flora. the 1.5 contains 355 cal/8 oz. I did pick up 2 cases of the carnation brk. hvc. and putting a can in, in place of one of the jevity. I do exercise my jaw opening it wide 20 times per day at least when i do think about it. So far christine I have no weakness at all no nausea either. thank goodness. I try to keep moving and busy the draw back is the feeding tube cause they have me setting at 70 cc per hr. well feeding takes 7-8 hrs plus you have to add water and or juices so = some more time but its all good! thanks again for being here for me and inspiring me to play it forward. donald

Donald

I have been exclusively on Jevity 1.5 since March of last year or about 11 months and while certainly not optional, it will work. I started out at 119 lbs after getting out of the hospital with a PEG tube (I did better the first time around w/o a PEG) and 6 cans a day of Jevity 1.5 plus a beer or wine have put me up to 136. I'm still 5'11" so I also know what it is to be considered skinny
Keep the Faith, you will do just fine
charm

Donald...

As long as you are tolerating the feedings, its ok to up the rate. Work on gradually increasing it by 10 every 4 or 5 days. If you have a problem back in down again. I was at 70 for weeks before I upped mine. Im now at 150 and will stay at that rate. I do mine starting at about 4pm while watching tv. Then I let it finish overnight. If you do it at night, make sure you are propped up in bed. I have the head of my mattress about 8" higher and use 2 pillows so its high enough.

Jevity as well as all the different prescription formulas come in different strengths. If you are using the carnation VHC, add a can of water to it. Its thick and can clog up your feeding tube.

Im so glad you are doing so well. See, it just goes to show people what a good positive attitude will do. It might start getting harder as the next few weeks go by. Reach out if you need help, we are here.