Postby zephyr » Wed Apr 28, 2021 1:36 pm
I don't want to be playing doctor or dietician without a license, just offering some things that helped me and might be worth a discussion with your doctor/nurse. Your mileage may vary.
When I had a bad flare one time, my oncologist prescribed Triamcinolone Acetonide Cream UPS, 0.5% 15 grams. It worked really well but, again, I think if you use it for more than a week or so at a time, it can cause other problems, so ask about timing before you use it.
Avoid going barefoot. This was a tough one for me but I eventually got used to it.
Avoid hot water. I really, really love hot showers but they really did a number on my HFS. I eventually got used to warm showers but cold was a step too far for me.
My husband took over the dishes so my hands wouldn't be in warm water. See if you can enlist family members for that job.
I don't eat a lot of pasta but when I do, I buy organic pasta imported from Italy. I've read posts (elsewhere) by people who claimed that when traveling through Italy they never have gluten or related issues with pasta, so I tried it & it didn't seem to affect my HFS. I've read Trader Joe's carries one; I buy mine at Sprouts (a smaller version of Whole Foods). As far as flours, I've read that King Arthur, Bob's Red Mill, Arrowhead Mills, and Jovial Food Einkorn flours contain no folic acid but, as Rock_Robster mentioned, a call to the manufacture would answer the question. Again, don't worry about naturally occurring folates, only the added/fortified/supplemented synthetic folic acid. If you can tolerate soy, Costco sells an edamame spaghetti noodle by Explore Cuisine. No, it doesn't take like pasta, and I can take it or leave it but it's a decent alternative and my family loves it. A good sauce helps. A friend once told me that a good sauce was the secret to eating anything. I think she was right. One more thought suggested by my naturopathic doc: spaghetti squash. No, doesn't take like pasta, but I really like it. It doesn't really taste like much of anything, very mild. Sort of an angel hair pasta substitute. I cut it in half, remove the seeds, put it face down on parchment paper in a tray, poke it with a fork/knife a few times, and cook it in the toaster oven at about 400 for maybe 30 minutes. When it's done, you take a fork and pull out the "spaghetti" strings.
I sure hope something here will help you.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin