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?
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?
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?
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.
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.
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.
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?
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.
Just found this. I can’t remember if I posted anything about this or not, bad memory. My husband was diagnosed 4 years ago and has been on Lanreotide inj and Everolimas for the last 2 years. He has about 50 tumors in his liver and some scattered in other organs. only 2 of the tumors were growing faster and the meds slowed them. He had to have valve replacement this past January. We went on vacation and he started the same gross swelling in thighs, abdomen and even his hands. He went to ER when we got back and it took 160mg of IV lasix twice a day for 2 weeks to get rid of it. Scans showed that now it’s the pulmonary valve that’s leaking and he’s upset that they didn’t replace that one as well when they did the mitral valve. Anyone have a similar experience?
Just found this. I can’t remember if I posted anything about this or not, bad memory. My husband was diagnosed 4 years ago and has been on Lanreotide inj and Everolimas for the last 2 years. He has about 50 tumors in his liver and some scattered in other organs. only 2 of the tumors were growing faster and the meds slowed them. He had to have valve replacement this past January. We went on vacation and he started the same gross swelling in thighs, abdomen and even his hands. He went to ER when we got back and it took 160mg of IV lasix twice a day for 2 weeks to get rid of it. Scans showed that now it’s the pulmonary valve that’s leaking and he’s upset that they didn’t replace that one as well when they did the mitral valve. Anyone have a similar experience?
I'm sorry to hear that your husband is having such difficulty with carcinoid cancer. It is good to hear that the meds have slowed the tumor growth. Has surgery been scheduled for the pulmonary valve?
I'm sorry to hear that your husband is having such difficulty with carcinoid cancer. It is good to hear that the meds have slowed the tumor growth. Has surgery been scheduled for the pulmonary valve?
Thank you so much for your comment and your link. He had one valve done. They want to try and control the link in the pulmonary valve with oasis to get rid of the swelling,as they said it’s not leaking as bad as the other one was. He’s quite upset that they didn’t do it when they were doing the other one. Mainly because the swelling is coming back in his thighs and stomach. I will check out the forum. Thanks again. I will keep you posted.
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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?
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1 ReactionHello @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?
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1 ReactionHello @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?
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1 ReactionYes 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.
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2 ReactionsThinking of you.
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?
Just found this. I can’t remember if I posted anything about this or not, bad memory. My husband was diagnosed 4 years ago and has been on Lanreotide inj and Everolimas for the last 2 years. He has about 50 tumors in his liver and some scattered in other organs. only 2 of the tumors were growing faster and the meds slowed them. He had to have valve replacement this past January. We went on vacation and he started the same gross swelling in thighs, abdomen and even his hands. He went to ER when we got back and it took 160mg of IV lasix twice a day for 2 weeks to get rid of it. Scans showed that now it’s the pulmonary valve that’s leaking and he’s upset that they didn’t replace that one as well when they did the mitral valve. Anyone have a similar experience?
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1 ReactionHello @bluebird1953
I'm sorry to hear that your husband is having such difficulty with carcinoid cancer. It is good to hear that the meds have slowed the tumor growth. Has surgery been scheduled for the pulmonary valve?
Here is a link to a Connect discussion where you can meet others with carcinoid liver cancer as well as carcinoid heart disease.
https://connect.mayoclinic.org/discussion/carcinoid-liver-cancercarcinoid-heart-disease-liver-damage/
As you post in this discussion group, you will find others with similar problems and you can read about how they are dealing with this combination of problems.
Will you continue to post and let me know how your husband is doing?
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2 ReactionsThank you so much for your comment and your link. He had one valve done. They want to try and control the link in the pulmonary valve with oasis to get rid of the swelling,as they said it’s not leaking as bad as the other one was. He’s quite upset that they didn’t do it when they were doing the other one. Mainly because the swelling is coming back in his thighs and stomach. I will check out the forum. Thanks again. I will keep you posted.
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2 ReactionsAuto correct: lasix, not oasis. lol.
Also. Leak, not link, in the pulmonary valve.
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