Badges (2)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (18)

Apr 2, 2018 · NETS tumor in the plural sac around left lung in Neuroendocrine Tumors (NETs)

Hello! Just thought I'd take a minute and send an update. I was at Mayo for some tests, scans, and a consult with my doctors. My echo showed my heart was improving and getting stronger with each visit. My MRI showed the carcinoid cancer to mainly be contained to my liver. As for the carcinoid they found in the plural sack around my left lung; we are just going to take the wait and see approach for now . Because this cancer was so small we felt we could continue to watch it for any changes. They were able to remove the catheter from my chest, I am just feeling better from that procedure. It is sore around my shoulder blade area and tire easily, but I do feel improvement. Happy to have no more draining and only a 10% chance it would return. First time I can say I've heard " return in 3-4 months" and be so excited!!

Mar 2, 2018 · NETS tumor in the plural sac around left lung in Neuroendocrine Tumors (NETs)

Hi, I was diagnosed with NETS last May. Since I have had open heart surgery to replace the two valves on the right side of my heart due to the carcinoid. Surgery went great, however 2 days later a carcinoid storm caused my body to crash. 10 days + I was in ICU and 10 weeks of dialysis due to renal failure caused by the storm. However, I have been battling the reoccurrence of fluid in the plural space surrounding my left lung. Thoracentisis on Dec 12, Jan 4, Jan 11, with removal of 1.2+liters each time. On Feb 23 I was referred to the pulmonary doctors, (after having a CT scan) I underwent a plueroscopy of this space. 1.4 liters tapped, biopsies taken, and a drainage line put in so I can drain it each morning. The goal is for 30 days. Today I learned the fluid in this area was negative, but the biopsies are positive for NET tumor. I will speak to my oncologist next week for a plan. My liver is full of carcinoid and I am trying to find any information on cancer in the lining of the plural space, not cancer in the lung. Please help me……I am hoping this weekend I can regroup and be ready for the next fight…..carcinoid is so mysterious. I am doctoring at Rochester Mayo and am new to all these "rare" findings. Is there a preferred scan? Or treatment? My kidney functions are returning, but I'm afraid to go back to dialysis! Thank you

Feb 20, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

I am so happy to hear it worked out for you. My local nurse told me there was no sense in having the pain. Continued prayers to you…..

Feb 13, 2018 · 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.

Jan 26, 2018 · 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

Jan 25, 2018 · 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
Sincerely,
Mollie

Jan 24, 2018 · 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.