1. < Neuroendocrine Tumors (NETs)

Spreading NET

Posted by harley4650 @harley4650, Apr 7 12:46pm

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 5:57am
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 9:09am

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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harley4650 | @harley4650 | May 14 8:00am

Its the same thing i was told

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lyons1234 | @lyons1234 | May 15 12:26pm
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 10:45am
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 9:47am

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

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