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Jan 27, 2018 · Mayo Presentation at the Northwoods NETs group - 1/14/18 in Neuroendocrine Tumors (NETs)

Mollie, Bless your Heart…. and your kidneys, and your liver!! Prayers for gaining strength and for continued stability of this cancer❤️

Jan 27, 2018 · Increasing Octreotide LAR Depot in Neuroendocrine Tumors (NETs)

My friend was admitted to the hospital in October after having a horrible September. Her O2 levels were low, she was dehydrated etc. Her oncologist was going to go to every 21 days because her symptoms had worsened. However, after being misdiagnosed by cardiologist, she was finally airlifted to MD Anderson a week later and underwent open heart surgery for her heart valves. Her injection in September had been administered too shallow, so basically it did not control the symptoms.
So now we joke that not only does she get to recover from major heart surgery, she still has stage IV cancer! We can joke because she is doing incredibly well. I saw her yesterday when she came for her injection. She is now on Xermolo and feels great, looks great! She enjoyed Christmas with all her family and is back at work full time. She has learned a lot— being proactive does not mean you are being negative, you can still have a positive attitude! In order to treat this horrible zebra, the doctors have to know “your stripes”! Also, just because you have checkups at a wonderful facility, it MUST be interdisciplinary, and because you are a zebra, all your docs must be familiar with NETS! This is a long update— but maybe just maybe there is somebody out there searching, trying to put some pieces together and this will help!

Jan 26, 2018 · Increasing Octreotide LAR Depot in Neuroendocrine Tumors (NETs)

They were going to go from 28 days to 21 days between shots for my friend

Jan 26, 2018 · Increasing Octreotide LAR Depot in Neuroendocrine Tumors (NETs)

They were going to go from 28 days to 21 between shots for my friend.

Oct 7, 2017 · Things to monitor, what to tell your doctor in Neuroendocrine Tumors (NETs)

@hopeful33250, @tomewilson
Thank you!! We have started videoing the dr. Visits since you mentioned it and this has been even more helpful with my friend in the hospital, no one wants to miss the doctor coming by! Now that we know about YouTube, we won’t have to break it down to little 1minute sections to be able to send!!!!!! I thank God for y’all! (Yep, I’m a Texan!)
My concern for my friend is that she was short of breath with minimal activity, increased fatigue but just mentioned at her monthly visits when the doc would ask– when she went in, her O2 was at 76%. She had no idea– leaky valves in heart had worsened since her last echo done 6months ago, now has pulmonary artery hypertension. I feel that maybe the cardiologist is not as familiar with the havoc that NETS’s venom can have on the heart. The ER doctor wouldn’t “bother” her cardiologist because her EKG was normal. The oncologist had called, thank goodness. Thank you all for your responses and helpful hints.

Oct 7, 2017 · Things to monitor, what to tell your doctor in Neuroendocrine Tumors (NETs)

This is a question but also a suggestion. Having a positive attitude is wonderful but being passive or not sharing what you are feeling can be detrimental to your overall health. Saying you are “okay” when you are very fatigued, short of breath with activities needs to be conveyed to doctor(s). Would someone talk about things that are important to talk to the doctor about with these types of cancer? I know that is wide open– but guidelines of what to monitor yourself, and note changes?

Sep 18, 2017 · Lesions, Cystic liver mets, vs Tumors in Neuroendocrine Tumors (NETs)

Rosemary,
Thank you! No wonder I couldn’t decipher what the radiologist was saying! She has to speak with her doctor. There has been no discussion for any other treatment, she has followup every 3 months at MD Anderson, and oncologist visits with her before her shot. When I go with her, it was basic- how are you feeling? Do you need pain medicine, are you having any swelling of your lower extremities or shortness of breath. She is a positive person but is very passive and tends to say I’m doing pretty good, doing okay. I realize this may be the best and/or only treatment for her, again just trying to be an advocate and trying to find more out about this “not your average “”normal”” cancer”.

Sep 17, 2017 · Lesions, Cystic liver mets, vs Tumors in Neuroendocrine Tumors (NETs)

Thank you so much for the responses! I have been out of pocket and just now able to respond. She has not had any surgeries. Her primary tumor was in the small intestine, mets to liver. She presently takes Lanreotide injections monthly. Her oncologist sent her to MD Anderson and that is the treatment they agreed on. She has had an octreoscan, gets a CT scan every 3 months. Thank you again for trying to help me get some answers.