June 13, 2018 at 10:14 am #97133gavinModerator
Sorry to hear what your dad is going through with this and yes, it is very important to try and deal with any appetite issues and the metal taste of food will not help with maintaining a good appetite,
I have some links from here in the UK and hopefully they will be of some help to you and your dad.
I hope that some of these will be of use to you Sar and my best wishes to you and your dad.
GavinJune 13, 2018 at 6:22 am #97129molly_mayParticipant
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.
MollyJune 12, 2018 at 10:08 pm #97128richnkimParticipant
I know that the Nestle’s compleat is for tube feeding but did you ever taste it? Was wondering if this could be taken by mouth also, as long as it didn’t taste horrible.
KimJune 12, 2018 at 7:14 am #97122molly_mayParticipant
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,
MollyJune 12, 2018 at 12:15 am #97121SarwithketchupParticipant
My dad has has stage 4 CC with mets to surrounding and hilar lymph nodes and to peritoneum. He has undergone an ERCP w/ biliary stenting about 3 weeks ago which helped temporarily and has gone through 2 rounds of FULFOX (Cisplatin and 5FU). He had another ERCP today and was told the tumor has grown and is putting pressure on his small intestine which explains the increasing early satiety. To add to it, the metallic taste is unrelenting, adding to his poor appetite & pickiness when it comes to food. He was told to try and avoid acidic/spicy to avoid mucositis. Is there anything to augment the “metal mouth”? I’ve done a general search and “MetaQil” came up–any reviews? Any other tips when it comes to improving taste? I am concerned for his nutrition. I try to make every meal count by supplementing with protein powder. I’ve tried Boost, Ensure but it tastes “medicine-y”. It’s extremely difficult to find something nutritious/high in protein & calories AND inoffensive to his taste buds.
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