Typical Carcinoid Tumor in Lungs

Hello Group...Just remembered I was a member here. And yes still chugging along with 2 whoppers. right lung and media sternum. Not much change though. Currently on Lanreotide injection every month and just stopped Afinitor. Lots of difficulty by radiologists to measure tumors accurately. Is it bigger...smaller or the same. The last CT very confusing to me but definite enough to stop Afinitor. Dr. Was looking for shrinkage. the wonderful word stable keeps popping up or even worse if the Radiologist looks sideways it looks the same. My nets are non-productive so it is also difficult to understand what symptom is actually attributable to the net. Crazee. right now I am going through an itch phase....itching all over and deep like a skin crawl. I have other afflictions but the NET gets everybody's attention. Everyone is learning.Thanks for reading GAP

Hi @gapsc, welcome back. Great to get an update from you. You'll notice I moved your update to the discussion group called "Typical Carcinoid Tumor in Lungs" where you participated before. I'm sure @hopeful33250 @mgreene and @ghassan will appreciate hearing from you again.

What led to the decision to stop Afinitor?

Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size reduction in tumor to possibly make resection possible. Although early indications were positive and I was able to tolerate the drug. the Oncologist decided out of the blue that it was not worth the effort or potential risks (news to me). Afinitor was stopped. A suggestion from Dr. Wolin of Mt Sinai in NY was to take Afinitor with the Lanreotide. the two drugs seem to work better. Again Afinitor was stopped. This has thrown me for a loop and the decision to stop that drug almost seems arbitrary. I really do not know what to do. So you asked a great question Coleen. I have sought alternative treatmentas since my initial diagnosis and it seems that unless I get the World Health Organization to back me up the suggestions are ignored. You might think that it is time to go elswhere...only to travel a great distance?.I am in Charlotte NC. I simply cannot afford to hop across the country to get a monthly shot. We are in our 80s and I care for my wife on a daily basis. Novartis the maker of Afinitor has been very kind to me and made Afinitor available. But I guess that may be the story of alternative treatments. You will get your shot and take your chances. there are no guarantees. Live well......be happy......thanks for reading GAP

Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size reduction in tumor to possibly make resection possible. Although early indications were positive and I was able to tolerate the drug. the Oncologist decided out of the blue that it was not worth the effort or potential risks (news to me). Afinitor was stopped. A suggestion from Dr. Wolin of Mt Sinai in NY was to take Afinitor with the Lanreotide. the two drugs seem to work better. Again Afinitor was stopped. This has thrown me for a loop and the decision to stop that drug almost seems arbitrary. I really do not know what to do. So you asked a great question Coleen. I have sought alternative treatmentas since my initial diagnosis and it seems that unless I get the World Health Organization to back me up the suggestions are ignored. You might think that it is time to go elswhere...only to travel a great distance?.I am in Charlotte NC. I simply cannot afford to hop across the country to get a monthly shot. We are in our 80s and I care for my wife on a daily basis. Novartis the maker of Afinitor has been very kind to me and made Afinitor available. But I guess that may be the story of alternative treatments. You will get your shot and take your chances. there are no guarantees. Live well......be happy......thanks for reading GAP

Hello, mine is in left lower lobe, approximately 11cm. Had echo and pulmonary function test yesterday. Have consultation Thursday with surgeon. How do you feel?

@dzerfas Hello and welcome to Mayo Connect. We would enjoy getting to know you better. If you would like to share something about your carcinoid, we would be interested in hearing what led to your diagnosis. Were you having specific symptoms that led to the CT scan in December? I've also had carcinoid tumors, but in the digestive tract. We actually have a group dedicated to those of us who deal with carcinoids. I'm not familiar with the term "Typical Carcinoid." I'd like to introduce you to @joanney, who has also had a carcinoid in the lung and had surgery several years ago. Perhaps she can shed some light on your situation. Here is a Mayo website that you might find interesting: https://connect.mayoclinic.org/discussion/has-anyone-used-mayo-clinic-in-rochester-minnesota-for-carcinoid-tumors-the/. In the meantime, we look forward to getting to know you and walking with you on health journey.

My sister and I both ended up with this in our lung. We, both, found out when doing a check for heart disease. Neither one of us have heart disease. Really weird to both have a carcinoid tumor.

Well had the surgery. I can’t lie anything with the lungs is rough. I’ve been better this 22-23 year. I am actually going to have a pulmonary function test this week, I have noticed a little out of breath after tackling staircases at hotels. I will come back and post my results . My prayers too everyone.