1. < Neuroendocrine Tumors (NETs)

Anyone have swelling with liver metastases?

Posted by willam @willam, Jun 22, 2023

hi,

does anyone have swelling in the ankles in face along with their liver metastases

thanks

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

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 22, 2023
In reply to @mmckeone "I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen...." + (show)
@mmckeone

I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen. I am waiting to be scheduled for right side heart valve replacement and bypass due to some blockage found during a heart catherization. I am currently treating with lanriotide a hormone therapy that is supposed to stop the NET from producing serotonin and spreading. Hoping the surgery takes care of the abdominal fluid. Anybody with similar experience?

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Hi @mmckeone, have you been schedule for heart valve replacement? @hopeful33250 may have some experience to share with you.

How are you doing?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 22, 2023
In reply to @willam "thank you for the input" + (show)
@willam

thank you for the input

Jump to this post

Hello @willam,

It has been a while since you last posted. How are you doing? Have your doctors suggested any treatments for the liver METs.

Will you post an update as it's convenient?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 22, 2023
In reply to @mmckeone "I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen...." + (show)
@mmckeone

I'm in the same situation. Lasix not helping. Started in legs then around waist then abdomen. I am waiting to be scheduled for right side heart valve replacement and bypass due to some blockage found during a heart catherization. I am currently treating with lanriotide a hormone therapy that is supposed to stop the NET from producing serotonin and spreading. Hoping the surgery takes care of the abdominal fluid. Anybody with similar experience?

Jump to this post

Hello @mmckeone and welcome to the NETs support group on Mayo Connect. From your post it appears that you have been treated for NETs and are now experiencing heart valve problems.

Please share, as you are comfortable doing so, how long you were diagnosed with NETs and if you have had any surgery for the NETs. Are you currently seeing a NETs specialist?

As you are experiencing heart valve problems, do you have a surgery date scheduled yet?

REPLY
mmckeone | @mmckeone | Jul 22, 2023
In reply to @colleenyoung "Hi @mmckeone, have you been schedule for heart valve replacement? @hopeful33250 may have some experience to..." + (show)
@colleenyoung

Hi @mmckeone, have you been schedule for heart valve replacement? @hopeful33250 may have some experience to share with you.

How are you doing?

Jump to this post

Yes I am scheduled on August 2nd. Have to have right side valves replaced. Hopefully I will get some strength back.
I am getting Lanreotide injections once a month and it seems to be helping. The surgery is scheduled at UNMC (University of Nebraska Medical Center).and I was able to pull a few strings and get the best cardio thoracic surgeon at the facility.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 4, 2023
In reply to @mmckeone "Yes I am scheduled on August 2nd. Have to have right side valves replaced. Hopefully I..." + (show)
@mmckeone

Yes I am scheduled on August 2nd. Have to have right side valves replaced. Hopefully I will get some strength back.
I am getting Lanreotide injections once a month and it seems to be helping. The surgery is scheduled at UNMC (University of Nebraska Medical Center).and I was able to pull a few strings and get the best cardio thoracic surgeon at the facility.

Jump to this post

Thinking of you.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 5, 2023
In reply to @mmckeone "Yes I am scheduled on August 2nd. Have to have right side valves replaced. Hopefully I..." + (show)
@mmckeone

Yes I am scheduled on August 2nd. Have to have right side valves replaced. Hopefully I will get some strength back.
I am getting Lanreotide injections once a month and it seems to be helping. The surgery is scheduled at UNMC (University of Nebraska Medical Center).and I was able to pull a few strings and get the best cardio thoracic surgeon at the facility.

Jump to this post

Hello @mmckeone

I hope that your heart surgery went well and that you are on the road to recovery. When it's convenient for you, will you post an update and let me know how you are doing?

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