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May 15, 2019 · Typical Carcinoid Tumor in Lungs in Neuroendocrine Tumors (NETs)

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

May 10, 2019 · Typical Carcinoid Tumor in Lungs in Neuroendocrine Tumors (NETs)

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

Mar 13, 2018 · Making decisions about air travel when traveling for medical help? in Visiting Mayo Clinic

Hi…GAP here…just made a res for a flight to Albany NY. I have a lung net, advanced, and my big fear is getting pneumonia. Crowded planes and airports are bad news for me but I have little choice in travel My first goal is to minimize exposure. First class, even though it is expensive may minimize who or what is close to me. Some perks are included in that like first boarding and access to overhead. I wish it was cheaper though. I will take a mask with me if my neighbor has any symptoms. Proximity to the rest room and availability is another hope in first class. As I think about it there may be other seats on the plane that may also be suitable,but the crowd….so maybe selective boarding is the answer without the designation of "handicapped". "Now boarding First Class and Select passengers would be the announcement"
Designated pickup areas for individuals who do not have obvious liabilities…perhaps an armband…to ease shuttle assistance etc. One of my Drs told me I pass the "V" visual test. I do not look sick. Lucky me!

Mar 11, 2018 · Typical Carcinoid Tumor in Lungs in Neuroendocrine Tumors (NETs)

Hello ya all. Had a rough time signing back in, but finally did the deed. Hope it continues to work. To answer your question Teresa. the immediate symptom was a severe coughing episode with blood. that sent me to the ER. I was recovering from an operation which had nothing to do with lung issues. So I knew that something was very wrong. I had been diagnosed with Barretts esophagus a few years before so I figured I must have ruptured a blood vessel. First x-ray showed tumor and was told I had lung cancer. I went into shock. I simply could not believe it. Although I was an x smoker I had not smoked for 40 years. Lung Cancer? The first cancer docs confirmed the news and Drs Doom and Gloom had such pondering looks, and really had a demeanor unbecoming cancer specialists. PO'd me to no end.
Prior to that event though I was told I had Asthma….COPD…..chronic Bronchitis, all to justify coughing and congestion, even Pneumonia. Fatigue etc. That misdiagnosis, very typical for lung carcinoids, prevented earlier detection of the tumor(s). Perhaps surgery was possible 3 years ago or even earlier….earlier?.
Back in the 70s, I was diagnosed with labile hypertension. Monitoring of that condition produced some strange blood and urine test results which confused the Drs attending to me. I ended up in the Lahey Clinic in Boston. At that time only high-speed x-rays, primitive nuclear scans, and sonograms were available for inside viewing. Nothing could be confirmed. The search at that time was for a Pheochromocytoma, another form of NET. Equally evasive and difficult to detect.
In a U-tube interview with Dr. Wollin of Montefiore Hospital in the Bronx, Carcinoids can hide for up to 40 years. If that is true was my initial tumor hiding for over 50 years? Highly doubtful I guess, but it certainly doesn't make me feel too comfortable.
And that was the beginning of it all.
So…I am still here and I am not going anywhere…GAP

Mar 10, 2018 · Typical Carcinoid Tumor in Lungs in Neuroendocrine Tumors (NETs)

Greetings. I am a newbee and just joined. I have a lung carcinoid. Actually there are two with a few nodes thrown in. I was diagnosed in May 2017. They are inoperable. I am currently on lanreotide monthly. I have local MDs (Levine Cancer) and have oversight from UNC-Chapel Hill. I know a lot and know nothing at the same time. GAP