Already on oxygen - diagnosed with DIPNECH

Hi @jan355
I'm so sorry to hear about your oxygen issues and for so many years. You didn't mention nodules, but there must be some if you were diagnosed with DIPNECH. When did they discover the nodules? When I read my CT reports, it's a miracle I can still breathe pretty well. My oxygen level goes its lowest when in my recliner or bed and it's always 92/93. For a few months it was at 89, but went back to 92/93. I've been told 88 is the magic number for supplementary oxygen that I don't ever want. I breathe okay when resting, just a little heavier and short breaths. When I yawn, no more air can come in during the last half of my yawn. I get a little short of breath when walking, but the octreotide injections have really helped that and my other respiratory symptoms (constant coughing was my main issue). Octreotide has been life changing for me. It has even helped some of my respiratory allergies. Inhalers and steroids did nothing to help my issues.

Have they considered trying octreotide injections for you? What do you have to lose but maybe an oxygen tank? What is your oxygen level without oxygen? Do you feel like you can't breathe without the oxygen?

As for what's next, I have read that some DIPNECH cases have resulted in lung transplantation. Would you ever consider that if available? Do you have any other major disorders that would disqualify you? Can I ask how old you are? DIPNECH is typically diagnosed in the 5th or 6th decade of life after years of being misdiagnosed. I'm 66 and was only properly diagnosed at 61 even though the nodules were discovered when I was 49. Severe symptoms since I was about 30. Lots of asthma before that (was it really asthma?)

DIPNECH is rare, only about 30 documented cases so not much data to go on, but it doesn't always turn into cancer and even if it does, you would likely have the slow growing typical carcinoids that can be managed. Based on my symptoms, I've had DIPNECH for 30-35 years or more. It did turn into lung NETs for me (typical carcinoids), but I'm still at stage 1 lung NETs with advanced DIPNECH. It hasn't spread outside my lungs. It's very slow growing.

You mentioned you were just diagnosed yesterday. So what has your pulmonologist said is next for you? Have you been seen by a lung NETs disciplinary team? That's a must because most specialists have no experience with DIPNECH and little to none with lung NETs. Mayo and university hospitals all have NETs teams. Experience matters greatly. Prayers for you.

Hello @jan355 and welcome to Mayo Connect. I see that @californiazebra has already posted with you. I agree with her response, it is important to seek out a NET specialist and one who is familiar with treating DIPNECH.

A one-time consultation at Mayo Clinic would be a good idea now that you are diagnosed. Here is a link with information about obtaining an appointment, http://mayocl.in/1mtmR63
If you cannot be sent at a Mayo Clinic facility for any reason, here is a list of NET specialists, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Often, just a one-time consultation with a specialist can put you on the right road for effective treatment.

I look forward to hearing from you again. Will you keep posting and let us know how you are doing?

Banner Health Patient: JAN
COMPUTED TOMOGRAPHY
Report:
Noncalcified pulmonary nodules some of which is detailed below. Punctate 1 to 2
mm nodules in the right lung apex as seen on series 4 image 41, unchanged from
prior. 1 to 2 mm punctate nodule in the right upper lobe as seen on series 4
image 89, unchanged from prior. 3-4 mm nodule in the middle lobe as seen on
series 4 image 128 unchanged from prior. 4 mm subpleural nodule in the middle
lobe as seen on series 4 image 131 and 149, unchanged. Subsegmental atelectasis
in the middle lobe. 5 mm nodule right lower lobe as seen on series 4 image 183,
unchanged. 9 mm groundglass opacity in the right lower lobe as seen on series 4
image 158, new from prior. 4 mm nodule right lower lobe as seen on series 4
image 143, unchanged from prior. 4 mm nodule right lower lobe as seen on series
4 image 135, unchanged. 5 minimal nodule in the left upper lobe as seen on
series 4 image 118, unchanged. 6 mm nodule in the lingula as seen on series 4
image 140, unchanged. 7 mm nodule left lower lobe as seen on series 4 image
138, unchanged from prior. Mild tree-in-bud nodularity better evaluated on the
MIP images.

These are the results of my October scan. I had a bronchoscopy with biopsy in December, and the biopsy was sent to Mayo.
My lung issues go back a lot of years, and I have been diagnosed with asthma, COPD, and a few others. I was put on night time oxygen after my oxygen went to 86 during an apnea test. Mostly my breathing issues after that were dealt with by inhalers and a nebulizer. Pneumonia shots keep me from my yearly bronchitis and pneumonia, and flu shots have helped. So that part seems stable.
Four years ago I was on prednisone and was exposed to a cold. I ended up in the hospital with double pneumonia with ground glass opacities on and off for a couple of month. They did a bronchoscopy but I desated too quickly for a biopsy.
I knew I was having breathing problems but my doctor (a woman!) told me it was stress. My cardiologist was the one who walked me, and my oxygen went down to 84 pretty quickly. He put me on oxygen, and after the fellow couldn't find what was wrong with me he managed to get a friend in the Pulmonology department at Banner to see me. After that I had 2 CAT scans - one in the summer and one in October. That was when my nodules were discovered.
I will be 70 in another month. I don't think I would want a transplant. I've had several back surgeries - I have what is called a collapsing spine. I have artificial joints in my feet. I have wet macular degeneration and have injections in my eyes every 4 weeks. With all of this, I honestly think the lungs, when available, should go to someone who can make better use of them.

Jan, sorry to hear about all of your health challenges. Sometimes DIPNECH is misdiagnosed as asthma or COPD early on, but reading your history it sounds like you may have both and COPD may be causing your issues as much or more than the DIPNECH. Great that Mayo handled the biopsy. Will you see a Mayo NETs specialist next for further evaluation and possibly a revised treatment plan? If Octreotide could result in some respiratory improvement, it might be worth considering. Please keep us posted.