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So, now just still waiting, losing my mind being worried and new quest
Number 1......I have realized my stool has been kind of chunky and yellowish for a couple months.......so I read that can be from stress alone, but did any of you have that, because I mostly just see diarrhea from others...
2.....remember my only real symptoms are the constant flushing, itching, now I also get itchy a bit all over, but if I flare up worse, it's my head that itches most. At night after some beers, which I'm normally fine with, however once I eat also, no mater what I eat, I then get more flushed, warm, glassy tired eyeballs. More itchy......I was getting faster heart rate, but some of that can be from the panic and stress
3.. if I skip food altogether in morning, I start getting higher blood sugar, i'm in type 2 now but trying to reverse on my own like I usually do by getting back in shape, but anyways, so I eat anything, low histamine or not, then suddenly insanely itchy head and more flush
3.. All these foods have shown negetive for allergy in blood work, but no matter what I eat, I get worse flush and itch.
4...again no diarrhea, no pain, no fatigue,
5.. 24 hour urine was normal, but, it only tested serotonin and cortisol
Tryptase was normal in blood work about 5 weeks back. Liver shows good except higher enzymes but I been drinking and eating and no exercise for over a year so they know I reverse that fast too.
6.. Going now to Endo, GI, and Alergist again, but taking forever with insurance
7.. Thinking about temporary disability but I only have basic through work, I'm in CA USA how am I supposed to pay my bills, but the stress and worry and itching and flushing and blood sugar yuck feelings and depression anxiety is killin me cuz I'm solo trying to do all this.
8.. again I had a CT in 2023 looking hard for tumors that caused my low testosterone after the virus, but nothing found, I know a PET is the real way but can I feel any ease knowing that at least, and that 24 hour urin was normal, how about the fact that if I have NET, it seems to be a histamine type, then what
9...if I have one that hopefully hasn't been around for ever, and these are my only symptoms, is there a good chance of removal
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Is the tumor a NET or NEC? If it is the latter, you need a different scan. And a more aggressive treatment. What do you mean by a histamine tumor? NEC can cause hot flashes and rashes. Find out. I co-chair a patient support group so let me know if you’d like to join. I am also in California
@kurtjazz01: I have Neuroendocrine cancer (sm intestine & liver met) and a year ago chose PRRT Lutathera as treatment for progression of my tumors. Results: I had little side effects and a great response (tumors shrunk dramatically and still getting smaller); the procedure is done by Nuc Med professionals with strict protocols - yes there are risks, but after my research I chose what I believe was what my body needed to give me more time. These decisions are not easy. I want the best health for you!
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3 ReactionsHello @kurtjazzy01 and welcome to Connect. I see from your post that you had surgery 18 years ago for several tumors in the liver and that your doctor has now suggested PRRT.
We have several members of the NETs group who have had PRRT, including @sophiarose, @vinnie694, and @dbamos1945. Most have had success with reducing the number or size of the NETs with this treatment. I am tagging them so they can post with you about their experiences.
How are you feeling? What type of symptoms are you having now?
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1 Reaction@kurtjazzy01
no alcohol when, way back before diagnosis or since youve been having surgeries and diagnosed and proof of tumors
About 20 years before I had surgery never drank that much anyway.
@hopeful33250 I feeling fine I had my yearly CT Scan and doctor told me tumors are really growing and I need the PRRT soon. I had taken shot for about 5 years .I had stopped 2 different times taking them last time was 3 years ago.
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2 Reactions@jsudjian Good morning, I was in a similar situation, was on Octreotide injections for a little over 2 years. Primary Tumors started in lower GI, and spread to liver. They were pretty stagnant for the first year, no new Tumors, but a small few were still growing (very slowly) . My medical team at Mayo, recommended I concider starting PRRT treatments soon. I was given some information on Lutathera, and after little more research on my own
I decided to go for it. Scans after the 4 treatments showed it was successful, some small tumors were not visible, and the larger ones decreased in size. As far as side effects from the treatments, I really didn't have any, other than fatigue, for a day. For me it was the right decision, best wishes for you ..
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4 ReactionsMy experience on (Beta) PRRT was - tumours taking off, so they took me off PRRT. I had 2, 2 months apart.
I am waiting to be put on the new Alpha PRRT clinical trial as that is supposed to be very different than the Beta.
Had some success with Histotripsy (for liver mets) and that proved good, but not complete.
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2 Reactions@ricki8: I am very interested in your healthcare. Can you tell me what your Histrotripsy treatment effects and tumor response? Also, since I had Beta PRRT for my Nets I want to know all I can about the Alpha PRRT!
I’m sure our NET peers would be grateful as I am for treatment experiences. Best of health to you!
dbamos1945