Hello @mollie59. I am in your same boat. Diagnosed in Feb 16, disease under control and now referred for Carcinoid Heart Disease. How are you doing and how did your appointment go?
Hello @cjohn and welcome to Mayo Connect's discussion on Neuroendocrine Tumors/Carcinoid. I am sorry to hear of your diagnosis of Carcinoid Heart Disease. I am a volunteer mentor of this discussion and I have personally had 3 surgeries for NETs and while I have some heart problems, they do not represent Carcinoid Heart Disease.
We look forward to getting to know you better. If you are comfortable sharing more about yourself, please provide us with a little more information about your history with Carcinoid. Have you had any surgeries or other treatments? Do you have symptoms of Carcinoid Syndrome? How are you feeling?
At present we are trying to calm down the Carcinoid liver cancer by doing a 20 CC injection of Sandostatin in each of the upper leg/hip area. This is important to get the cancer calm as I have developed carcinoid heart disease too. On Sept 21 I will have open heart surgery to replace the 2 valves on the right side of my heart. My surgery will be at Mayo Rochester.
As for my cancer, most of my symptoms are gone, however, usually one week prior to my injections I get a low grade fever, chills, bloating and lower abdominal discomfort from my swollen liver. The injections are painful at first as I've gotten quite thin with little muscle to inject into., but with rest and then walking it off it's better.
As for my heart, I am more short of breath and simply cannot do stairs well at all. Once I am strong enough after surgery, the oncologists will take over and be more aggressive with treatments. I am getting tissue (animal) valves. So we don't want the cancer to attack the new valves.
Stay calm, positive, and take one day at a time.
Hi. My primary was found in the terminal ileum. Metastasis to nodes, liver, and other organs.i had debunking surgery in Feb 2016. I'm on Sandostatin LAR every 28 days a week ago, I have an echocardiogram. Damage to valves is leading me to a consult with A Cardiologist at Mayo. I'm forever thankful that I'm able to obtain amazing care at Mayo Clinic. Im feeling great all things considered. I don't really have any reactions to my injections that are really worth mentioning. I'm just so thankful.
Back in 2008 I was diagnosed with carcinoid having a mid-gut primary with liver metastasis. I have been on monthly sandostatin injections since January 2009 and the dosage has changed twice over the 8+ years depending on favorable test results. Years prior to my carcinoid diagnosis I developed heart disease, that is not related to the carcinoid. I understand that over 50% of patients can develop CHD (carcinoid heart disease) but to date I've shown
no manifestation of any heart valve lesions. I have had no surgeries and my treatment has been the sandostatin injections only. The injections have minimized my symptoms and kept the progression of tumor spread at bay.
I can definitely relate to your emotional state as I've been there dealing with carcinoid and heart disease. I do want to offer you words of encouragement though. As Teresa mentioned, there are many of us "noids" living and thriving with this rare disease. Many of us who have passed the 10, 15 and 20 year mark and living productive lives. Yes, I do suffer from symptoms: diarrhea at times but very well controlled, flushing occasionally, abdominal pain now and then and fatigue, but I am doing well.
You've come to a good group for information and support. If I lived near Rochester, the Mayo Clinic is where I would go for treatment. It is my understanding they are a comprehensive cancer center, have cutting-edge technology and offer whole-person care for this rare disease.
Everybody's journey is different and I wanted to share with you mine. I am hopeful for continued health and thankful for support I've received from groups and blogs on this disease.
I am glad to hear that you are doing well post-surgery and with the Sandostatin treatments.
I have heard wonderful things about the cardiologists at Mayo, they are known throughout the country to be the best in dealing with Carcinoid heart disease. Doctors who specialize in NET/Carcinoid issues always recommend Mayo to patients with Carcinoid heart disease.
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Hi Mollie @mollie59
I've been thinking about you and the appointments that you had at Mayo. How are you doing?
Teresa
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1 ReactionHi Mollie @mollie59
I hope all is going well for you. Have any new treatments been suggested for you?
Teresa
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1 ReactionHello @mollie59. I am in your same boat. Diagnosed in Feb 16, disease under control and now referred for Carcinoid Heart Disease. How are you doing and how did your appointment go?
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1 ReactionHello @cjohn and welcome to Mayo Connect's discussion on Neuroendocrine Tumors/Carcinoid. I am sorry to hear of your diagnosis of Carcinoid Heart Disease. I am a volunteer mentor of this discussion and I have personally had 3 surgeries for NETs and while I have some heart problems, they do not represent Carcinoid Heart Disease.
We look forward to getting to know you better. If you are comfortable sharing more about yourself, please provide us with a little more information about your history with Carcinoid. Have you had any surgeries or other treatments? Do you have symptoms of Carcinoid Syndrome? How are you feeling?
Teresa
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1 ReactionAt present we are trying to calm down the Carcinoid liver cancer by doing a 20 CC injection of Sandostatin in each of the upper leg/hip area. This is important to get the cancer calm as I have developed carcinoid heart disease too. On Sept 21 I will have open heart surgery to replace the 2 valves on the right side of my heart. My surgery will be at Mayo Rochester.
As for my cancer, most of my symptoms are gone, however, usually one week prior to my injections I get a low grade fever, chills, bloating and lower abdominal discomfort from my swollen liver. The injections are painful at first as I've gotten quite thin with little muscle to inject into., but with rest and then walking it off it's better.
As for my heart, I am more short of breath and simply cannot do stairs well at all. Once I am strong enough after surgery, the oncologists will take over and be more aggressive with treatments. I am getting tissue (animal) valves. So we don't want the cancer to attack the new valves.
Stay calm, positive, and take one day at a time.
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Hug
3 ReactionsHi. My primary was found in the terminal ileum. Metastasis to nodes, liver, and other organs.i had debunking surgery in Feb 2016. I'm on Sandostatin LAR every 28 days a week ago, I have an echocardiogram. Damage to valves is leading me to a consult with A Cardiologist at Mayo. I'm forever thankful that I'm able to obtain amazing care at Mayo Clinic. Im feeling great all things considered. I don't really have any reactions to my injections that are really worth mentioning. I'm just so thankful.
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1 ReactionThank you for your info. This was very helpful to me.
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1 ReactionHello @cjohn
I am glad to hear that you are doing well post-surgery and with the Sandostatin treatments.
I have heard wonderful things about the cardiologists at Mayo, they are known throughout the country to be the best in dealing with Carcinoid heart disease. Doctors who specialize in NET/Carcinoid issues always recommend Mayo to patients with Carcinoid heart disease.
Is your cardiologist appointment coming up soon?
Teresa
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1 Reaction*debulking surgery, not debunking surgery 🙂
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1 Reaction@cjohn
Thanks for clarifying, but as fellow "zebras" we all knew what you meant!
Teresa