Marvin had his first check up after treatment today. He was told that he needed to start to try to eat more and not depend on the peg for all of his food. He seems really tired these past few days. The doctor said that was because he wasnt getting enough real food to help get his strength back. I find it hard to figure out how to get regular food in that will match a can of boost or VHc. If he eats something do I then take away one can of food so he doest get to full?

Also they said that there is still a small mass on the side of his neck. (they said it could be scar tissue) I was wondering is this normal. The normal person could not see the mass it is only when they check him that they can feel it. We are to wait 2 more months for a pet scan to get more accurate reading. They said however if we notice the side of his neck getting bigger then we are to go back right away. But they didnt think that would be the case.

Barb,

They just won't let us have one peaceful minute. I've have 3 post Tx scans and each time they told me "congratulations, everything is fine....but....". I know that the best I can expect is a perfect scan (whatever that this) and that can only last until the next scan but I hate that word BUT or IT CAN'T BE EXCLUDED.

Also, I was told to try to eat as much "regular" food as I could post Tx for my swallowing and I did but I also drank 6 cans of VHC everyday for about 2 months. Now my docs tell me getting that much protein a day was good for me during that period of time. I just wonder if anyone out there really knows what we should specifically do?

I was 5'5' and 118 lbs and was told I needed 80g protein a day to promote healing. Since I didn't have a peg, I was eating real food in very small bites and quantity for the first several months. To get my 80g, I ate my food with fortified milk(carnation instant breakfast in a glass of whole milk) and drank Ensure Plus (13g) to fill out what I wasn't getting otherwise. I'd check with the dietician to see how much protein his body needs. I was also put on Zinc sulfate, Vitamin C and a multivitimain by dietician. That was also almost 10 years ago so I don't know if protocol has changed. Hope that helps.

Take care,
Eileen

Hi Barb, It's still based on total calories so as Jack started eating we cut back on the cans. Remember he can also drink the formula since that's swallowing and those calories count. You can add things to it to make a shake. Look for high calorie foods that can be pureed in a blender to start him off and build on that success.

They sell protein powder that can be added to foods as a boost. I think it's intended for shakes but also works in soft food. I've also heard that protein promotes healing. Remember that it will take time to build up the ability to eat larger amounts so start our with small frequent attempts at feeding. We made up a schedule so Jack could keep track of what he was eating and adjust his plans accordingly.

I think it's normal to be tired at this point, that took a while to get better with Jack. The statistic we kept hearing was 1 month of recovery for every week of treatment - and that's pretty much what happened. A PET scan would not be accurate at this point, everything will light up due to the treatment. It's frustrating to hurry up and wait, but some things just take time. It will get better.
Regards JoAnne