I was diagnosed with neuroendocrine cancer. A month ago

@@faithcanli1861 Check out Ronny Allen. He has had this for over 10 years and his website has tons of good information. My mom also has a 3rd cancer now and has been referred to a hemotologist/oncologist. They found something in her lymph nodes during her small bowel resection. It's not related to the neuroendocrine cancer it's totally a seperate cancer. Her surgeon is calling her next Tuesday to go over it with her. As I mentioned previously, one of the tumours shrunk from 2.9cm to 2.2cm after only 4 months of Lanreotide/ Somatuline Depot injections. I honestly believe we will have a cure for cancer soon. Venom from honeybees kills some breast cancer cells, you can google this to see the news. Also, vaccines are now being used in drug trials for various cancers and people with brain tumours are surviving still after 10 year's. I think they are on the right track on how to treat this. I spend at least 4-5 hrs a day doing cancer research and studying clinical trials taking place all over the world. You may also get sick from the first injection, but it will get better. Your body just needs to adjust for it. They are doing clinical trials for a daily pill rather than a monthly injection, so that's going to so much easier to deal with.

Hi @@faithcanli1861, please be in touch if we can help you with more information. Youi can write to us through our website, carcinoid.org, or give us a call at 888-722-3132, Eastern Time. You are not alone!

Hi Ann, we hope your mom had a smooth recovery from her surgery. Please be in touch if we can share more information about neuroendocrine cancer with you and your mom.

Faith Canli I just diagnosed with neuroendocrine cancer a week ago. I am still in shock with this horrible news.

Get ready for one hell-of-a-ride! There is a 'new' life coming for you. Get whatever you can remove from your liver, removed at once. Go to Kenner LA if your doctor won't work with you. Dr. Boudreaux is excellent and they are experts in NET. Once you do have your liver cleaned out, it should be about a year to 18 months before the metastases, everywhere else in your body (which you can't see now) begin to grow. Get a PET-CT scan between one and two years after a major 'body clean up'. Use caution in your decision to do PRRT (dotatate ONLY). Don't let anyone talk you into dototoc -- worthless! Most people have the sst2 & sst5 mutations and that hybridizes 10X less with dototoc than dotatate. Also, if your Ki67 is less than 5, think twice before letting anyone talk you into chemotherapy. Chemo is generally worthless for this tumor if it is well defined, anyway. The only treatment that will likely be very effective is targeted immunotherapy or targeted monoclonal therapy -- everyone is waiting for this, which doesn't exist today.

Hi Michael, please let us know if we can provide any information that would be helpful. You can use the Contact form on our website, www.carcinoid.org/contact/, to be in touch. And you are always welcome to call us, 888-722-3132, Eastern Time, if you'd like to chat.

Hi Grace, we're sorry to learn that physicians in your country are unable to do enucleation. Could you possibly travel to South Africa where there are NET physicians or another country? While we wish we could give you guidance about the cost of such surgery, we don't have that information as it varies so much around the world. If you are interested in doctors in Europe, here is a link to the European Neuroendocrine Tumor Society Centers of Excellence, www.enets.org/coe.html. There's a map on that page where you can see all of the centers with contact information. We hope this helps.

Hi Mary, you will be in wonderful hands with the neuroendocrine tumor team at Ochsner. If you'd like feedback from others who also see the team there you might want to contact the Louisiana NET support group, www.carcinoid.org/support-group/louisiana-carcinoidnet-support-group-lanets/. You could also post on one of the online support and discussion groups such as ACOR or Smart Patients, www.carcinoid.org/resources/support-groups/online-support-and-discussion-groups/, or one of the many Facebook groups dedicated to the NET community. We wish you all the best with your health and visit to Ochsner. Sending you lots of positive thoughts.

If there is anyway u can contact cancer centers of America they are really awesome I started with them 4 years ago and they give me one shot a month that has stopped my tumor growth and spreading since day one they work to fly u over for free and help with hotel cost please give them a call and I am just across the river in Mississippi if u need to talk

Hello Hiren, we're sorry your dad is experiencing pain. This is definitely something he should discuss with his physician/team of physicians. They can determine the cause of the pain and the best treatment options. Wishing your father all the best with his health.

@@CarcinoidNETs We talked our gastro physician many times. But always he prescribed the PPIs for the same and told to wait and watch. But it's not working.

@@CarcinoidNETs Last time physician was thinking to give octreotide treatment. Should we try that as well?

@@hirenpatel2641 as we are not a medical institution we can't offer case-specific medical advice. Your father's health is very important and he should make any treatment decisions in consultation with his physicians who have access to all of his medical records. If you send us an email through the contact form on our website, www.carcinoid.org/contact/, and let us know where your father lives, we can direct you to resources where he is located.

Can they do radiation to help shrunk them?

Well .. doctors said no need for radiation right now .. they said this stage need only everolimus .. i really dont know what is the best theraby?

Hi @@adamsiology, there are many factors that go into choosing treatments for NETs. Is your wife seeing a neuroendocrine cancer expert physician? We can help you find doctors who are NET specialists if you write to us through our website, https//www.carcinoid.org and let us know where you live.

Ahmed Moneer hi can I pls contact you..pls give mobile number..want to check treatment options for my dad

Find a doctor to remove as much tumor bulk as possible as soon as possible. Stop relying on drugs that are only marginally effective. Afinitor (Everolimus) is very limited in its effectiveness for many NETs. Everolimus (as Zortress - same drug just different names and strengths), is a great transplant drug (mTOR inhibitor) but a poor chemo drug. Search out a center that is aggressively treating NETS, don't wait.