Find Support

Anti Food

Anti Food

Posted By
Carlsbad317
6/11/2019 11:09am
View other posts by
Activity
Replies: 5

Between the Ipi/Nivo and radiation - not sure who gets the blame for the taste of food, but weight is dropping quick! Everything tastes like cardboard, metal or poop. The dry mouth is quickly becoming just as much as a pain as the others stuff.
Does anyone have an “ah ha” moment that you wish you would have found sooner with regards to being able to eat?
Thanks!

Hanlon

Hukill - (6/11/2019 - 1:50pm)

Welcome to the club! While on the combo my taste buds got screwed up also. Anything with salt tasted like I was eating salt tablets and anything with sugar was like eating spoons of sugar. Funny thing is during this time my sugar level went high and still is and my sodium level went low and still is. I have to add lots of salt to my food and I still can get my sodium on my labs up to the minimum cutoff. During this time I lost 28 pounds, called it the melanoma diet. I also lost my saliva for 11 weeks at this time. Was prescribe artificial saliva but didn't work. I tried every thing at the store to wet my mouth but nothing worked. I had to carry water with me because my throat would get dry and make me choke. I would wake up during the night with my tongue stuck to the roof of my mouth. I also carried water with baking soda and salt to rinse my mouth out because it made my breath horrible. Chewing gum helps. After the combo ended everything went almost back to normal. Still get dry mouth about once a week, sodium still low, sugar still high. but small price to pay for NED.

Bubbles - (6/11/2019 - 3:01pm)

While on nivo I had a lot of problems with things tasting and smelling bad, sore mouth, mouth ulcers and dry mouth. My last dose was in June of 2013 and the good news is that I remain NED and the problems slowly resolved! I found no major cures...but counterintuitive as it may seem....things like lemonade and dill pickles were tasty and helpful. Probably sounds odd and I don't know if you will find them so...but my little chemo patients always liked them. Years before I went through my ta-dah, I always stopped by the hospital grill to pick up a bag of dill pickles for one of my little fellows when I knew he was in house. Hope it helps. celeste

obtu.bt - (6/11/2019 - 3:48pm)

I am in my 2nd week of first ipi nivo combo. Dry mouth already started just in the morning but currently no problem of taste. Would you also precise when does side effects started?

Hukill - (6/11/2019 - 5:21pm)

In my second week after my first combo the rash appeared on my arms and upper chest, almost 3 years later it is still there. I was very lucky in that my rash never itched or burned, it is just there. I had 7 tumors in my lungs and before being diagnosed had developed a little dry couch and some sharp pains off and on in my right chest probably a month before. The same time my rash appeared the cough and pains went away and I was sure the combo was working. During the combos I had lots of side effects and still have some even today but really no new ones after the combo and just on the nivo.

obtu.bt - (6/13/2019 - 3:10am)

Many thanks for sharing those information. Rash also apprared on my wrist. Sometimes more visible, sometimes dissappear.. I will live them and see what is happining as well