1. < Neuroendocrine Tumors (NETs)

Spreading NET

Posted by harley4650 @harley4650, Apr 7, 2024

Just a up date on my journey of net been on my shots octretide for two yrs. had four treatment of prrt, not going very well tumors have increase in my liver and there are more and larger. Mayo wants me to see if i qualfied for a trial study.Cancer seems to be in the liver only.

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bnjncrew | @bnjncrew | May 12, 2024
In reply to @lyons1234 "Hello bnjncrew, I'm also having severe edema in my legs and feet. I have also developed..." + (show)
@lyons1234

Hello bnjncrew,
I'm also having severe edema in my legs and feet. I have also developed acities. My Net specialist doesn't feel its from the
tumors or PRRT treatment I had 3 months ago. The net specialist and my Oncologist are looking at possibly cardiac as the cause. I had Carcinoid Heart Disease and had two valves replaced 1 yr ago (severe regurgation tricuspid and pulmonary valves.) I just had an electrocardiogram. It looks like I could have some issues there. The Oncologist wasn't real
specific in his explanation. I have an appointment with the Cardiologist.
Good Luck with your
treatments !

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My husbands got better but it reoccurred after a flight and the last time it was after flying also. He is wondering if flying has something to do with it. Our best to you!

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bnjncrew | @bnjncrew | May 12, 2024

I also forgot to mention he was on everolimus and his oncologist discontinued this and the swelling went down (he did still swell this week when flying but I guess that can be common when flying)

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1 reply
harley4650 | @harley4650 | May 14, 2024

Its the same thing i was told

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lyons1234 | @lyons1234 | May 15, 2024
In reply to @bnjncrew "I also forgot to mention he was on everolimus and his oncologist discontinued this and the..." + (show)
@bnjncrew

I also forgot to mention he was on everolimus and his oncologist discontinued this and the swelling went down (he did still swell this week when flying but I guess that can be common when flying)

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interesting, I never would have thought that. Thanks for the reply.
Best Wishes !

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sandy23 | @sandy23 | May 21, 2024
In reply to @harley4650 "Its been 2 yrs. from net diagnosed,give you heads up never had embolization symptoms are worse..." + (show)
@harley4650

Its been 2 yrs. from net diagnosed,give you heads up never had embolization symptoms are worse and under hospice care

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Might I suggest you get a 2nd opinion? It's just a thought. Also, possibly speak with a surgeon who is familiar with Nets in the liver. My hubs had stage 4 Nets originating in the small intestines and the liver seemed to be the "go to" spot for the tumors. It was speading and growing. He had "debulking of the liver" surgery which had gone to the other lobe. He then underwent a radiation treatment called Lutethera. Both were done last year. And he has had 2 CTs since Jan and with his continual shots of sandostatin (octreotide) he is once again stable. If you live near Charleston SC I can recommend an excellent Oncologist and surgical oncologist who both specialize in NETS. His surgical oncologist happens to also specialize in liver surgery. We felt like we got the best of the best. I encourage you to seek more options. Also, (I guess I should've asked first) why have they put you in hospice care? 🙏🙏 you can go another route.

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harley4650 | @harley4650 | May 22, 2024

My other options at mayo clinic was chemo, and wait for a trial opening at mayo.

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cordelia73 | @cordelia73 | 22 hours ago
In reply to @michaelv "I’ve gone through four embolization procedures on my liver and I’m down to my last one..." + (show)
@michaelv

I’ve gone through four embolization procedures on my liver and I’m down to my last one on Friday. The tumors grew very fast once they started giving me the octreotide injections. Surgery wasn’t an option and as they have already said they can really only do histotripsy on smaller ones (it’s more of a maintenance for tumors once you know you have them). My largest tumor was the size of a grapefruit and required 2 embolization procedures to start killing off. This procedure on Friday is to get rid of two smaller ones. Oncologist wants me to start chemo pills afterwards but that won’t be until after my next scan in May. In case you were wondering most of my main symptoms have severely lessened (nausea/diarhea/constipation/etc) after the fourth embolization and my continued octreotide injections. Because of the size of the tumors it really took a lot out of me after each one, and as I’m only 49 I rushed to get them done sooner. This last one I was in no rush to get them done and I let my body heal. I lost a good 40lbs and I’m starting to put it back on. Keep up your fight and make sure you are looking at all of your options.

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Hi, sorry to hear about your diagnosis and really hope you'll regain your health back again after this last treatment. One question, what grade and stage were you when you were first diagnosed? Are your tumors well differentiated or poorly differentiated?

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