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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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This site was given to me at Mayo's in Mn.. I am sooo glad to be able to talk with someone who understands. I am my husband's caregiver. I hope this is right place to ask a question. My husband has had Nets since July of 2017. He has been on Lanreotide shots ever since. He has had 2 oblations for the liver. Which is the place he has tumors. Now he had his first PRRT. My question is? His first PRRT was very easy on him. Do they get harder each time? Also he has a very bad heart valve.The bad valve dosen't seem to cause him any trouble at this time. Will he be able to have it fixed if the PRRT works? Thank you for listening.
A very concerned wife.

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Replies to "This site was given to me at Mayo's in Mn.. I am sooo glad to be..."

Welcome to Mayo Connect, @glenkinman68

I am glad that you have joined our NETs discussion group. It is wonderful that you are trying to learn all that you can so that you can advocate for your husband.

It sounds like your husband is getting some good care. You mentioned that he has a bad heart valve. I'm glad to hear that it is not a problem now. Some of us have heart problems that are not related to NETs. Has your husband been told that his heart problem is related to NETs? Which heart valve is affected?

Your oncologist could best advise you as to whether the PRRT treatments will be more difficult to tolerate each time. It is good that he got through the first one easy, though.

Is his liver considered the primary site of the NETs? How does he feel in general? How is his appetite?

Here is a video about PRRT treatment that you might find helpful,

I have Pnet with 23 tumors on my liver, and else where. They are looking at doing the embolize the tumor or a few of them. How did you do through this procedure and when did did you go through this ? Thank you, Anthony