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Flushing with NETS lung cancer?
My understanding was that flushing only happened with those who have GI NETS. However, I have developed something very weird in the last 8 months or so. Cinnamon, and spices like cinnamon, mild banana peppers and even mild onion cause my face to feel hot and prickly and then that feeling moves all the way down my body to my feet. It is so uncomfortable and lasts hours even over night. When I wake up in the morning, the heat and prickly pain has subsided. Has anyone experience this? Is this how flushing starts with NETs or, is my body just being a "weirdo"?
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I have a lung NET and My flushing was immediate and only lasted a minute or so. My negative food reactions lasted longer after eating something my body/ treatment didn’t agree with.
I’ve cut out bananas, highly processed meats, and most sugars. This has satisfied my food issues. Now taste changes and neuropathy are physical symptoms that I seem to have. Along with dizziness and fatigue
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3 ReactionsI had all the NET at a before being diagnosed, probably for 5 years they CAT my lungs to watch the nodules. did not grow. They saw growth 9/23, and l said about symptoms, and they felt my diverticulitis inflammation can cause all my symptoms.! My G.I. Surgeon told be to not neglect my lung and blood issues. I respect him! My pulmonologist ie. Says my PET/ST scan was normal, except for the lung small nodules. She will not address the SUV. 9.96, uptake is high somewhere i.e. My "mean liver." Go to Dana Garner May 1 5.
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1 ReactionI have neuropathy as well but I blame it on my Graves Disease, but, maybe it's a combination of NETS and Graves. I find that I tire out quickly but then, when it comes time to go to bed, I'm wide awake. I make myself go to bed anyways, hoping I will fall asleep. I eventually do but hours after I have been laying in bed. Frustrating.
I ordered vegetarian pizza last night and forgot to ask to remove the onions. About 30 mins after I had finished eating, my face started the prickly burning and went from my face down to my feet. Lasted for hours, went to bed with the prickly, burning sensation. Thank GOD when I woke up this morning, it was gone.....
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1 ReactionHello @gig666
I hope that your appointment at Dana Farber is helpful and provides you with information and direction as you deal with NETs.
Will you post again after your appointment?
Yes, l will write back 5/15. Also, at UMASS l am ha ing a team l see Friday a thoracic doctor, then a I oncologists specialist in Lung cancer. I know l am going to be wiped out, but l have my notes, l Will get my answers!
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3 ReactionsYour tenacity, expressed in your words "I will get my answers!" will be valuable to you as you look for answers and treatment directions, @gig666. I look forward to hearing from you again,
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1 ReactionI have had neuropathy for over 15 years, right side only. MS. Group followed my case due to fibromyalgia plus my unexplained symptoms of slurred speech, my walk looked like l was drunk by noon the at work. The wonderful neurologist at UMASS. felt my neuropathy was due to environmental poisoning, which was very high in our time. I was put on gabupetin, for the burning and pins and needles in my hand and feet. I was blessed to get Disability, which allowed me to rest more.
I did not have NETS then. Medication is to numb the pain! No cure, so fair! My husband suffers also, environmental poisoning also, over 30 years sadly his has progressed to his hands body, and feet numbness. Plus diabetic meds. And gabupetin, for pain which by night he is really uncomfortable. He does not have Nets. Check for studies being done for neuropathy brought in by environmental poisoning. Clinical trials.
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1 Reactionthe fatigue sucks. I'm so tired of being fatigued.........
Hi. My sister had a biolobectomy for an atypical pulmonary carcinoid tumour in February and she has flushing (gets red in face and neck, chest for about a minute or two several times during the day). Her urine 5 HAS is normal so far and doctors tell her it's not related to carcinoid. However, I've read lab reports can be in normal range and flushing can still occur. Is this true for you?
Hi Ekri. I've not had the redness in my face, neck or chest. Well, not quite fact, one evening my husband asked me if I had a fever because he said I was flushed. He took my temp, but, no fever. That was only the once and it was just my face. But the heat and prickly sensation goes on for hours . Thankfully, if it happens at night, by the morning it's dissipated. One of my oncologist checked to see if I had a "functioning" nets, and, the blood tests came back as it not being "functioning". I guess time will tell, though, I see the thoracic surgeon next week and hopefully surgery to remove tumour in June. Hoping for a "one and done" .