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NETs with Liver metastasis: starting lanreotide injections

Posted by Anonymous524849 @anonymous524849, Oct 27 2:41pm

Had what I thought was a bad stomach bug, turned out to be a neoindicrine tumor blocking my small intestine with lymph node involvement. Had surgery to remove it which went well. Recent dotatate pet scan showed it matasized to my liver and a group of lymph nodes. Also have stage 3 marginal zone lymphoma and stage 3 melanoma. Melanoma was removed 6 years ago with no recurrence. Spoke to oncologist today, wants to start me on laneotide injections.
Spoke to oncologist today about studying lanaterode injections

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jeanyves7357 | @jeanyves7357 | Oct 31 10:37pm

In 2021 I went to the emergency room with severe stomach pain. Thank-God the emergency room doctor wanted to look further. Turns out I had Nets cancer in my small intestine. They removed the tumor. Things looked good until the Nets moved to my liver. So had another surgery to remove 19 tumors from my liver. Started Lanreotide injections. I've had 9 months of injections. A couple of times it smarted. The side effects I have been having are. Headaches, extremely exhausted, chest pain, weak at times. There has been changes in my heart. I have some left ventricle thickening that was found in a recent Echo. I'm stage 4. Looks like the Lanreotide is working. I just had a scan done but it won't be read until November 7th. Just recently I had a mammogram done and I got a call that they see something. I go in for second mammogram Dec.30. To find out if it is the Nets or the breast cancer I had removed in 2011. I've been a little anxious. It's hard because it's hard for family and friends to understand.

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jeanyves7357 | @jeanyves7357 | Oct 31 11:05pm
In reply to @tgsenn70 "My husband also has NET in small intestine and liver. Can someone tell me what symptoms..." + (show)
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My husband also has NET in small intestine and liver. Can someone tell me what symptoms come along with this diagnosis? Is vomiting common? What else can we expect? Any information is appreciated.

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I've had 9 months of Lanreotide treatment every 28 days. It started in my small intestine and moved to my liver. I've had headaches. Out of the 9 injections only 2 hurt. And the last one I got was the first time it was sore at the site. And I have a knot that isn't going away. When I touch it, it doesn't hurt. I am not experiencing pretty major chest pain. It is really uncomfortable. Waiting to hear the results of a Echo cardiogram. And results from the recent CT Scan. Just had a Mammogram and had a call from the doctor to see if it is returning breast cancer or Nets.

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tgsenn70 | @tgsenn70 | Nov 1 6:42am
In reply to @jeanyves7357 "I've had 9 months of Lanreotide treatment every 28 days. It started in my small intestine..." + (show)
Profile picture for jeanyves7357 @jeanyves7357

I've had 9 months of Lanreotide treatment every 28 days. It started in my small intestine and moved to my liver. I've had headaches. Out of the 9 injections only 2 hurt. And the last one I got was the first time it was sore at the site. And I have a knot that isn't going away. When I touch it, it doesn't hurt. I am not experiencing pretty major chest pain. It is really uncomfortable. Waiting to hear the results of a Echo cardiogram. And results from the recent CT Scan. Just had a Mammogram and had a call from the doctor to see if it is returning breast cancer or Nets.

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@jeanyves7357 thank you for sharing. Prayers for you and your journey.

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