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Wow, Barbara. You must be a strong woman with a great attitude. I have colitis from the pembrolizomab and feel like I will cry for joy if I can ever eat a salad again. Thank you for helping me keep things in perspective. I have only been receiving treatment since November. Sorry about the high blood pressure. That sounds scary.

Yes, still having diarrhea due to ongoing Lenvima. My treatment began as a Len/Pem combo. Daily Len and 36 Pem infusions every 3/wks. I was then deemed stable and put on Len alone. I’ve been in treatment nearly 4 years and told I’m doing well. High blood pressure has been a bigger issue than the GI effects. I’m on 3 HBP drugs at max dose. I find nutritionists utterly useless. If I followed their advice, I’d be in huge distress. I say, don’t beat yourself up about a “healthy” diet with all the grains and fiber. Your GI issue isn’t your fault, it’s the chemo. It’s important to eat enough to survive, whatever you can tolerate.

Thank you, Barbara. Very helpful! Are you still on a low residue diet because you are still getting pembrolizomab, or are you getting chemo treatments for this long as well?
Bananas and applesauce didn’t work for me either!
Yes, I never knew how heavenly a baked potato could be!

Oh, one other comment to add - if you’re on a low fiber diet for a long time (as I am), your blood cholesterol may rise bc fiber moves it out of your system. I recommend limiting eggs yolks and other animal products not to raise your natural ldl or triglycerides. Get it checked often. In my case, I developed xanthelasma (ugly cholesterol deposits around the eyes) after 2 1/2 years on low residue diet. Keep trying to sneak healthy veg, fruit, and grains into your diet whenever possible. 🤞

I had to experiment to see what I could tolerate. Bananas didn’t work for me and neither did applesauce. I found that if I cooked certain veggies down to mush (squash, spinach, green beans) I could mix them into my rice in limited quantity. Among other things I couldn’t handle are dairy, all meat (except for lean fish), legumes (beans and lentils), oil, whole grains (incl oats), nuts and seeds, and all fresh fruit and veggies. That leaves me with a short list of potatoes, dry crackers, seedless jam (except orange), white breads, tomatoes, low fiber vitamin enriched cereals (crispy rice, corn flakes, farina, rice porridge) as my staples. When you’re hungry, you will be surprised how good a plain potato or a bowl of corn Chex cereal tastes with some almond or soy milk. I limit the use of loperamide bc it can cause heart arrhythmia, but occasionally it will let you “indulge” in something like vegan pizza or tuna with a little pickle relish. My advice is to take vitamin supplements (find out which you need and which won’t interact with your drugs). Be creative with dry herbs and drink fluid to keep hydrated. There are lots of great soy products (very binding) out there too. Once your infusions are done, the diarrhea will stop.