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4 days ago · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Hello, I too was diagnosed with Carcinoid Center in May of 2017. Mine is located in the liver. I am able to get my sandostatin injections at my hometown hospital. I was given a tube of lidocaine lotion to apply to my injection sites 30-60 min before, I live close so can apply it at home, however, I’m sure they could apply it for you. This made a 100% difference for me! I no longer had the pain or the sore hips for the day following. It is worth a try. Good luck to you.

Fri, Jan 26 7:31am · Mayo Presentation at the Northwoods NETs group - 1/14/18 in Neuroendocrine Tumors (NETs)

Thank you for the sincere comments. Supporting one another is so important and helpful, however, the real heros are God and my doctors

Thu, Jan 25 11:58am · Mayo Presentation at the Northwoods NETs group - 1/14/18 in Neuroendocrine Tumors (NETs)

Hello, here is an update. Sept 21 heart surgery to replace two valves in my heart. 2 days later a carcinoid crisis/storm causing my body to crash. Renal failure from all the drugs used, causing my kidneys to shut down. Dialysis for 6-7 weeks and Oct.31 I was taken off dialysis completely. Dec. 12, Jan. 4 & 11 thoracentisis procedures to drain the fluid build up in the sac around my left lung. Fluid was negative for cancer. MRI w/out contrast on Dec. 13 showed my caracinoid liver cancer to be stable, I continue with 40 mg sandostatin every 28 days. i am trying to regain my strength so in March I can have a MRI with contrast. My symptoms from carcinoid are under control with the sandostatin with minor issues the last few days before my injections. i am on the mend slowly,just so thankful the dialysis was short lived and my kidneys are regaining their strength. I pray daily for each and everyone fighting their own battles with their health. Carcinoid cancer is a hard one to understand and even hard to explain to others. Have a great day, everyone! Stay positive

Wed, Jan 24 6:30am · Mayo Presentation at the Northwoods NETs group - 1/14/18 in Neuroendocrine Tumors (NETs)

Thank you so much, Tom. I was in attendance, my son took me and found it very interesting. I will forward the link to my other 2 sons and my husband to watch. Very informative

Dec 1, 2017 · Talking Frankly about Living with Advanced Cancer in Cancer

Sarah Young has some very well written Christian devotion books. One of my favorites is Jesus Calling or Jesus Lives. They are short one page inspirational readings with bible verses to cross reference to. These books gave me strength to get through my heart surgery and complications all caused by carcinoid cancer. Your friend is so lucky to have you, she needs you now more than ever.

Nov 24, 2017 · Carcinoid liver cancer/carcinoid heart disease/ kidney damage in Neuroendocrine Tumors (NETs)

Hi, I am looking for information and advice. On May 25,2017 I was diagnosed with carcinoid liver cancer. However, Carcinoid had already attacked my heart causing a diagnosis of carcinoid heart disease. On Sept. 21,2017 I had open heart surgery replacing the two valves on the right side of my heart. The surgery went as planned, but within the next 1-2 days I went into a carcinoid storm/crisis. My body shut down and because of all the drugs needed to bring me back, I lost complete kidney function. I was on dialysis for 7 weeks. I was very fortunate that my kidney function returned and I am no longer on dialysis. Now that my recovery from heart surgery is 9 weeks out, the oncologist has ordered an MRI to see if and where the cancer has moved. I am frightened about using any dye or contrast as I do not want to injury my kidneys again. I realize they will test my blood and not intentionally use a contrast that could injure them. I am looking for anyone who is dealing with carcinoid cancer who could ease my mind. I am a 60 yr old female

Aug 30, 2017 · New Here, happy to see this group! in Neuroendocrine Tumors (NETs)

Thanks for all your encouraging words, they come at a good time. I will keep you in my prayers, as I do for all Carcinoid patients