chemo & “metal mouth” and appetite

I have not tasted it. I can say it doesn’t smell appetizing. I think if nothing else tastes good, this would taste worse.

I did see Ensure has come out with low sugar/low fat versions. Not as many calories of course, but still a lot of protein and vitamins.

Molly

I’m going to put this out there because it has worked well for me. What they are calling “early satiety”, is actually a slow emptying of your stomach due to the pressure on the small intestine. You might notice that its easier to eat more in the morning, but that rapidly declines throughout the day as the stomach remains full. I could eat a decent breakfast, but almost nothing after that, and was rapidly losing weight that I couldn’t afford to lose.

My solution was to get a jejunal feeding tube (yes this sounds bad, BUT I regained the weight I lost and my weight has stayed stable since then). A jejunal tube puts the food into your intestine, past the blockage. You can still eat normally if you want (or can). The feedings occur overnight. The pump makes an annoying sound, but I wrap it in a thick hand towel and a small foam cooler, and then I can barely hear it.

My ONC was TOTALLY against this (I still have no idea why). I went through my primary care Dr, and my insurance covered it. People seem to die of starvation with this cancer, in some cases long before the cancer itself kills them. And how do you fight without good nutrition?? With the tube, even if you’re nauseous, you can still get the nutrition you need.

I have been on it for 18 months, and just got a bypass that will probably allow me to go back to eating enough without the supplemental feedings. I’ve also done very well in terms of no progression. Is it related? I don’t know, but my Dr says good nutrition certainly can’t hurt. I use Nestlé’s “Compleat” formula, which is all real food, no sugar. You can also blend your own, if you’re comfortable doing that.

The tube is not as bad as it sounds and it certainly saved my life. For the most part you can still do most things. I’m pretty active caring for my horse, trail riding, moving hay etc. The process for getting the tube involves getting a hole in your stomach, which hurts like a son of a gun for about two weeks (imagine grabbing a little fold of skin and pinching it), and the tube needs to be changed every 3 months, which is painless and takes about 20 minutes. Other than swimming, I can’t think of anything I haven’t been able to do.

Because of the supplemental feedings, I have the energy to live my life, while going through chemo or whatever. Its something you might want to look into.

I wish you the best,

Molly