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Biopsy showed DIPNECH
I received the results of a lung biopsy last week & it showed DIPNECH. I see an oncologist next week to discuss treatment options. Pulmonologist recommended Octreotide & Lanreotide as options to consider. Have had chronic, persistent cough that has gotten progressively worse over the course of 3 years, as well as fatigue & shortness of breath upon exertion. I've been in pulmonary rehab for about 4 months, which has helped. Looking to connect with others & hear side effects from both meds. My pulmonologist suggests med be administered through infusions. Anyone heard of this?
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Hi! I’m in VA but will be going to Duke at some point to see an oncologist there once the referral is sent. My pulmonologists are both located in my state. One has said specifically that Duke is the best center in my area to manage my DIPNECH, though I’m not sure if they have a NETS team. I haven’t had a Dotatate/PET scan & I wonder if having one would identify any tumors, or if I should rest on the fact that none were detected in my high resolution cat scan, just tiny nodules. I feel so thankful to have connected with people who have this disease. It makes it seem less scary. Hope this helps.
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1 Reaction@nanabarbara
I’ll reach out to you in a private message.
@kdubbs
DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long long lonnnnngggg time. Even if it turns into lung NETs they will likely be slow growing typical carcinoids like I have. We’ll grow old together. I’ve had all this for decades. I had the DOTATATE Ga68 PET scan and it turns out I don’t have the somatastatin receptors needed for NETs to show up on that scan so no more DOTATATE scans for me. But Octreotide still works to calm my DIPNECH cough and other issues. You’ll do great!
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2 ReactionsThanks for the encouragement & reassurance. I had silently prayed to connect with others who have this because the road ahead can feel daunting, especially when you don’t know anyone with this; or when you haven’t spoken with an oncologist to get the “lay of the land” to know what I’m up against. I feel so encouraged. Feel free to message me anytime.
~k
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1 ReactionHi , I have the exact same diagnosis and situation as you do. I have tumorlets scattered throughout my lung. Was diagnosed with typical carcinoid net 9 years ago. 2 years ago I had part of my right lobe removed. I have scans once a year and thankfully no treatment. I can walk for 10 Miles straight but 1 flight of stairs and I am totally out of breath. They told me these are very slow growing tumors. I am 73 and I hope and pray for the best . They told me old age would get me before this. I hope they are right. Occasionally I do cough , but I c a live with that. Wishing you well
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2 ReactionsWow! Very similar! (Except I’m not sure I could walk 10 miles.). I can, however, walk a lot as long as I don’t walk too fast. If I do that I start getting short of breath again and have to slow down and sometimes stop for a short bit. That part is frustrating because I used to walk quite a lot. And for some reason now my leg muscles have just gotten very, very weak, which doesn’t help! At this point, I still get scanned every six months, but the doctor appointments after each scan are now by remote video call. I’m sorry you’ve had to go through this too, but it’s nice to know you’ve had it this long and not too much has changed. I didn’t know. I had it at all until they found the tumor by chance. But who knows how long I had had it already, because by the time they found it, it has some malignancy. I really don’t worry about it too much, but I am reminded of it when I’ve had some symptoms.
I agree! I wish I could walk that distance without shortness of breath or fatigue. I used to love walking, especially on the treadmill when it was too cold to go outside. My nodules are so small that I don’t need a PET scan dotatate but I’ll get a CT scan just to do a baseline. I’m looking forward to starting the cancer med because I’m ready to be cough-free.