1. < Neuroendocrine Tumors (NETs)

Net unknown cause of breathing problems

Posted by peggymariejackson @peggymariejackson, Apr 9, 2023

I have a off and recurring Net in my stomach.Since 6/2021 was diagnosed with Net in my stomach went from stage 2 to Stage 1.I have a had a breathing problems for the past year.They even sent me to a Pulmonologist but everyone keeps telling me it is my asthma,I have had asthma since I was 4.Never have experienced like this.I have to do my nebulizer 3-4 hours or less than that and constantly take mucinex Dm.My oncologist takes Ct scans of my chest and pelvis abdomen every 6 months and blood test the only thing showing is high eosinophils and neutrophils.They seem to not be concerned for they pass the buck.Not many tests Pulmonary function test normal allergy test no allergies which I have a hard time to believe.No one seems to care.Constantly wheezing can’t sleep much.

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peggymariejackson | @peggymariejackson | May 19, 2023
In reply to @ce1b "Hi Californiazebra, My NETs is a stage 3 atypical large cell considered to be a fast..." + (show)
@ce1b

Hi Californiazebra,

My NETs is a stage 3 atypical large cell considered to be a fast growing type of NETs. So far my treatments have reduced my tumor sizes by half. That was the positive results of the treatments to date. I'm looking forward to another positive result on this next PETscan as well. Hoping the treatments keep the spread of the tumors in check.
I've lead a healthy life up to the cancer diagnosis so my body is in good shape to take what ever is next. However the treatments have been taking its toll on my health. For me one of the impacts have been the change in my daily routines. Appointments and fatigue are some of the biggest impacts to my lifestyle. I've always led a busy life now I'm having to adjust to more downtime as the treatments schedules are reduced.
I see some new hobbies on my horizon as I progress in this NETs journey.

Kindest Regards
Ceb1

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God Bless everyone as we go through this journey together.I am moving closer to my son and my oncologist.I pray good things keep a positive outcome for all of Us.❤️❤️❤️❤️❤️🙏🙏🙏🙏

REPLY
Zebra | @californiazebra | May 19, 2023
In reply to @ce1b "Hi Californiazebra, My NETs is a stage 3 atypical large cell considered to be a fast..." + (show)
@ce1b

Hi Californiazebra,

My NETs is a stage 3 atypical large cell considered to be a fast growing type of NETs. So far my treatments have reduced my tumor sizes by half. That was the positive results of the treatments to date. I'm looking forward to another positive result on this next PETscan as well. Hoping the treatments keep the spread of the tumors in check.
I've lead a healthy life up to the cancer diagnosis so my body is in good shape to take what ever is next. However the treatments have been taking its toll on my health. For me one of the impacts have been the change in my daily routines. Appointments and fatigue are some of the biggest impacts to my lifestyle. I've always led a busy life now I'm having to adjust to more downtime as the treatments schedules are reduced.
I see some new hobbies on my horizon as I progress in this NETs journey.

Kindest Regards
Ceb1

Jump to this post

Hi @ce1b

Sorry to hear you have the atypical type. I feel lucky to have typical since it's slow growing. It sounds like your treatments have been effective though so that's great news!!! Very encouraging! Your healthy lifestyle and upbeat attitude are a huge plus.

I absolutely agree with you regarding appointments (so many) and fatigue changing your lifestyle, but I'm happy I can still enjoy life, just in shorter increments with more resting.

Blessings to you! Keep us posted. 🙂

CA Zebra

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ginnym3 | @ginnym3 | May 20, 2023

Could it be heart related, not lungs? I'm being evaluated for Carcinoid Heart Disease due to an incidental finding from a CT scan of the chest, abdomen and pelvis where an astute and observant person reading this scan noticed my heart was enlarged on the right side (by the way, I have had plenty of CT scans previously). Just a thought.

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peggymariejackson | @peggymariejackson | May 20, 2023
In reply to @californiazebra "@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,..." + (show)
@californiazebra

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b
I see some of you have lung NETs, some GI NETs, but talk about breathing issues and mucus. I have lung NETS -- typical carcinoids. I also have DIPNECH which is really rare and can be a precursor to lung NETs. I have 50+ tumors approx. 1 cm across both lungs. I had tumor microwave ablation at UCLA to destroy the largest one that was 2.6 cm (they were afraid that one might metastasize). We first discovered the tumors in 2008 -- an incidental finding. I wasn't diagnosed until 2020. I had a chronic cough, mucus for 30 years plus shortness of breath and fatigue just with walking. My NETs was diagnosed with a biopsy. I then had the DOTATATE Cu64 PET scan, but it turns out I'm one of the people without somatstatin receptors so that didn't even catch what we already knew. Something like a third of the NETs patients don't have those receptors. However, even though I don't have those, octreotide helps symptoms of DIPNECH.

So I've been taking octreotide injections every 4 weeks for over 2 years. Within about 3 months of taking them, my coughing, mucus cleared up and the shortness of breath improved. They also give octreotide for some GI NETs to control symptoms. I'm wondering if this can work for you? Also, as far as seeing the tumors in your lungs. My interventional radiologist at UCLA told me it's not the 50 tumors we can see that cause my symptoms, but the hundreds or thousands of tiny tumorlets that are too small to see on CT scans, but line my airways. They know they are there based on PFTs, maybe the general structure in scans and from other cases. Octreotide might be something to discuss with your oncologist. Octreotide has been life changing for me. It's also supposed to slow down tumor growth, but mine grow very slowly anyway. It took them a decade to double in size.

I also have GERD, sleep apnea and asthma with allergies or when sick, but it turns out the lung NETs and DIPNECH were to blame for most all of my symptoms. My chemical sensitivity has even improved. Best of luck to all of you.

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I want to ask I have been experiencing a lot falls and balancing issued a couple months ago I fell and cracked my head open and 5 staples.Today fell in Family dolllar parking lot and messed my ankle and hip up.Do any of experience this?

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2 replies
ce1b | @ce1b | May 20, 2023
In reply to @peggymariejackson "I want to ask I have been experiencing a lot falls and balancing issued a couple..." + (show)
@peggymariejackson

I want to ask I have been experiencing a lot falls and balancing issued a couple months ago I fell and cracked my head open and 5 staples.Today fell in Family dolllar parking lot and messed my ankle and hip up.Do any of experience this?

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@peggymariejackson, I have dizzy spells and some balancing issues. I attribute this to the multiple drug therapies and or the cancer itself. In the next 2 week I'll start KT rehabilitation. This is supposed to help with some of the issue for the dizziness and balancing. It might be worth checking out.

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Zebra | @californiazebra | May 20, 2023
In reply to @peggymariejackson "I want to ask I have been experiencing a lot falls and balancing issued a couple..." + (show)
@peggymariejackson

I want to ask I have been experiencing a lot falls and balancing issued a couple months ago I fell and cracked my head open and 5 staples.Today fell in Family dolllar parking lot and messed my ankle and hip up.Do any of experience this?

Jump to this post

@peggymariejackson
So so many things can cause dizziness and balance issues. I've always had dizziness issues from neuropathy, low blood sugar and allergies. When you're falling and getting injured, that's a serious problem.

This is probably not the cause for you, but I'll throw this out there anyway just as something to rule out. When my brother was put on blood thinners for heart reasons, he suddenly started feeling faint, passing out and getting seriously injured. He was in the ER 7 times in 6 months before they figured out the cause. He unknowingly had esophageal cancer and the blood thinner had made his tumor start bleeding so he become seriously anemic. Maybe you've already had blood tests recently that can rule out anemia?

I hope you find the cause so you can be safe!

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