So, now just still waiting, losing my mind being worried and new quest

Posted by jsudjian @jsudjian, Sep 21 5:29pm

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

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for ricki8 @ricki8

Hi dbamos1945

I watched Dr. Grewal on Sep. 18 with his talk on Alpha PRRT and trying to
copy the page to send to you. It's through the Neuroendocrine Cancer
Foundation and if this doesn't work, I'll try and find another way to send
it to you.
https://www.ncf.net/
I did mention my experience with Histotripsy and do like it, however it's
limited and extremely expensive ($250,000.) CAD.

Let me know if there is anything else I can suggest,
Ricki

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@ricki8: Thank you for your reply. I listened to the podcast again and found it reassuring that there are positive steps being taken with Alpha PRRT trials. Can you tell me any differences you noticed between your Lutathera Beta PRRT treatment and the Alpha PRRT clinical trial as a patient treatment?
Why was Hipotripsy chosen for your Nets progression? What area of the body and size of tumors were treated? If in the liver, was it close to the portal vein?
Hope my curiosity is not annoying! Thanks, dbamos1945

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Hi dbamos1945
I am waiting to take the clinical trial for the Alpha PRRT - it is coming to Vancouver by the end of this year.
I am happy to report on my progress then.
I personally chose Histotripsy (my Oncologist was unaware of it as it's not offered in Canada). I had it done in Seattle because after the Beta PRRT caused my tumors to take off, I was desperate for a different direction. This was done for the tumors in my liver (that was the only target in 2024), they are hoping to get to other areas. I have to get back to you re: 'portal vein'.

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Profile picture for dbamos1945 @dbamos1945

@ricki8: Thank you for your reply. I listened to the podcast again and found it reassuring that there are positive steps being taken with Alpha PRRT trials. Can you tell me any differences you noticed between your Lutathera Beta PRRT treatment and the Alpha PRRT clinical trial as a patient treatment?
Why was Hipotripsy chosen for your Nets progression? What area of the body and size of tumors were treated? If in the liver, was it close to the portal vein?
Hope my curiosity is not annoying! Thanks, dbamos1945

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@dbamos1945
Hi again - re: close to the portal vein question - I had a bland embolization that shut off blood supply to the liver tumor situated in my midsection.
Hope this helps.

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@ricki8: thank you so much for the patient’s perspective of Histotripsy. I have noted your responses and will consult my Oncologist regarding treatment for a liver tumor very near the portal vein. Histotripsy has possibility since it only affects the tumor… if not then discuss embolization. You have helped me!
Best health to you Ricki! dbamos1945

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I am more than happy to share the results of my experiences with you. I hope it is helpful to you. We are learning every year, hope and discoveries are coming at a fast pace!
Best of health to you as well and to all those going through their experiences.
Ricki

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