Anyone living long-term with DIPNECH on lungs?

Posted by rogo @rogo, May 9, 2024

I have written on this form before. I am 71 and was diagnosed with very slow growing neuroendocrine tumors on my lungs 8 years ago. No treatment at all . Two years ago I had lower left lobe removed as one small tumor changed . I saw my oncologist yesterday for my 6 month blood and scan / X-ray. I was very happy and fortunate to get a stable , no change report . My encologist said I could go on like this forever ( although I live in constant fear ). Is there anyone who has this neuroendocrine dyptic tumors that is leading a long life with little or no treatment. My only problem is I get out of breath when I climb stairs or any upgraded hill. I can live with this. Just want to know if anyone else has been living a long time with this. My doctor called this a condition I could live with rather than a cancer ( even though it is )

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Zebra | @californiazebra | May 9 11:56pm

In reply to @nannybb "@californiazebra I have been. But I wake up in the morning flushed (??)" + (show)

@nannybb
Supposedly, octreotide can help with that. Maybe over time or a different dose? My flushing tends to happen more at night and the whole right cheek. I was told octreotide can also cause it. Was it happening before octreotide?

nannybb | @nannybb | May 10 1:22am

In reply to @californiazebra "@nannybb Supposedly, octreotide can help with that. Maybe over time or a different dose? My flushing..." + (show)

@californiazebra Zebra, the surgeon wants me to try the I.M. dose when I'm finished with 3 times a day. I'm really not worried, worried about it. I hate the flushing before surgery, and after. It contunued with the shots. I'm actually more upset that no one is concerned about my not having CAT scans. I just need an oncologist to be in charge of putting my treatments all together. Hope YOU are feeling better. 💕

Zebra | @californiazebra | May 10 2:16am

In reply to @nannybb "@californiazebra Zebra, the surgeon wants me to try the I.M. dose when I'm finished with 3..." + (show)

@nannybb
I agree. Scans are important. I hope you can get a good oncologist to manage your case soon. You’ll like doing the shot just once every 28 days.

I’m feeling good today. Thanks for asking.

nannybb | @nannybb | May 10 2:51am

In reply to @californiazebra "@nannybb I agree. Scans are important. I hope you can get a good oncologist to manage..." + (show)

@californiazebra Thanks Zebra. Happy Mother's Day 🌹

mbarreras | @mbarreras | 5 days ago

In reply to @californiazebra "@mbarreras Nodules left behind by valley fever was one of the incorrect guesses doctors had when..." + (show)

@californiazebra I went to the Pulmonology. He is having to do Flonase, an allergy pill, and an inhaler, both Symbicort and Albuterol. None of them stops the coughing. I am having a Pulmonary function test next month and a PET CT Dotatate to see if I have any cancer that might of returned in the lung.

Zebra | @californiazebra | 5 days ago

In reply to @mbarreras "@californiazebra I went to the Pulmonology. He is having to do Flonase, an allergy pill, and..." + (show)

@mbarreras
Good luck. So frustrating for you. I was told with DIPNECH, it’s not the nodules we can see causing the cough, it’s the hundreds of tiny nodules in the airways that are too small to see on a scan that cause the symptoms. Hope they figure it out. 🙏