Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

I was diagnosed with atypical carcinoid neuroendicrine tumors in March of 2022. I underwent surgery to remove a tumor from my lung and a smaller tumor just under my skin on my side. (There were many of these small tumors that had cropped up over the course of a year, before my diagnosis.) The smaller tumor turned out to be the same cancer. I had four chemotherapy treatments composed of Atezolzumab, Carboplatin and Etoposide, one every three weeks. Scans after the treatment showed no recurrence of tumors in my lung. The smaller tumors under my skin, however, were not affected, so my oncologist changed my treatment to an injection of Octreotide every 28 days. This week I have two scans scheduled to assess the effectivity of the Octreotide. As far as I can tell, the small tender tumors have not subsided; in fact, there are some newer ones. I'm very discouraged. Has anyone else had these small tender spots under the skin? They're too small, or thin, to light up on a scan, unfortunately, which just adds to my frustration.

Hi @triveraderubio and others with DIPNECH and Lung NETs. I hope the octreotide is working for you. Sorry to hear about all your side effects. I typically have all the rare side effects, but am doing well with octreotide. I too have the rare and likely underdiagnosed DIPNECH. Due to chronic bronchitis, I had my first chest CT in 2008 that revealed I had over 50 tumors sprinkled across both lungs. I was 49. We monitored heavily with CTs for two years and they were slowly growing. Lots of guesses over the next 12 years by many radiologists, anything from metastatic cancer, but where is the primary cancer to remnants of a viral infection which didn't make sense to me since the tumors were still growing. Many more guesses leaned toward something benign. 20 local radiologists, pulmonologists, oncologists and others were baffled. They said they could only biopsy by cutting my chest and lung open so I declined especially since they leaned toward benign. I had a history of chronic coughing, shortness of breath upon exertion and constant issues with clear mucous. In 2013, I was diagnosed with breast cancer, but it was stage 1 so they didn't believe that was the primary cancer for the lung tumors. Had a mastectomy due to BRCA2 mutation. In 2020, my breast cancer returned in my chest wall (KI-67 50%) and now they insisted on a lung biopsy. They could do it with a needle as the tumors had grown. I agreed. I was diagnosed with typical carcinoid or lung NETs (Ki-67 2%). The breast cancer is much more aggressive so they started that treatment first. Due to the 50+ lung tumors, removing them is not an option. I'm being treated at UCLA by a NETs team for my lungs. My interventional radiologist destroyed the largest tumor (2.5 cm) with microwave ablation as that one was most likely to metastasize. Not fun, but better than surgery. My other tumors are approximately 1+ cm. He told me if any hit 2 cm, we will do microwave ablation again. I've been told there are hundreds or thousands of small tumors lining my airways that we can't see on the scan and those cause the symptoms. I then started the octreotide injections and am just hitting the 2 year mark on that. 30 mg every 4 weeks. Those have been life changing as my coughing is now minimal, mucous issue minimal and shortness of breath much improved. I was known as a chronic cougher since my mid-30s. I'm now 64. I'm not nearly as sensitive the chemicals/fragrances as I was. Asthma inhalers did not help my cough over the years. As for side effects, that's challenging because I had started Kisqali and Letrozole for metastatic breast cancer two months earlier so had lots of side effects already. I can tell you octreotide made me diabetic, caused my heart rate and blood pressure to go even lower. I was already very fatigued, but felt octreotide added to that. It seemed my hair was thinning more now, but hard to tell which drugs were responsible. All worth it! When I read up on typical carcinoids, it seemed all articles talked about one tumor so I started my own research to determine why I had so many. I actually presented DIPNECH to my oncologist after reading the 2019 Mayo Clinic retrospective study about 59 patients with DIPNECH over the past 20 years. Thank you Mayo Clinic! I was not at UCLA then, but later requested to be referred to the NETs team there as it's only a hour away. Thanks for listening. Excited to find others with DIPNECH and lung NETs. I don't normally do group chat so not sure if it's better to comment or hit reply or if it matters.

Thank you for sharing your experience. As I read your story it seemed just as complicated as mine.

The Sandostatin has controlled my cough and while I still feel fatigued, it is much less. You mentioned hair thinning ….it’s interesting because I noticed this too and so did my friend who is also my hairstylist.

Because I am Towards the 5th mark of treatment and have the chronic stomach pains, Just recently I underwent chest X-ray with contrast, abdomen Ct scan and guided thyroid biopsy. The nodule on my thyroid has increased its size and two small ones appeared. My liver is oversized and the radiologist leans towards the hepatocellular disease and my gallbladder has no stones, but has “slush”.

I received a call from a nurse practitioner of the oncologist department where I work (United Healthcare) and she is insisting that I go to Mayo Clinic.

My oncologist has told me that in his years of experience, I am the most challenging patient he has ever had.

My journey for the past year and the years that lead up to it, have been interesting.

My next appointment with my oncologist is on the 6th. I will know more then.

Again, thank you for sharing.

May you be blessed.

Thank you for responding. Yes, you do have a lot going on, definitely more than just DIPNECH. Like you, I hear from every doctor that I am a challenging, baffling, interesting, etc. case. My son does too. We both have a rare hereditary neuropathy that causes oodles of issues too. I think you're wise to go to Mayo Clinic because you need providers that are interested in rare cases and love the challenge. Places like Mayo Clinic have also seen more rare cases and have more resources. Some doctors do not want anything but textbook cases. We are definitely not that.

I'm glad your cough has improved. To me, that was huge! It was miserable for 30 years and it's a social problem. I couldn't be near anyone with scented products, candles, air fresheners, cleaning chemicals, but often was coughing for no apparent reason. Working in cubicles was impossible. Getting an office was a blessing then remote work even better.

I also am missing some enzymes to metabolize meds properly. I always have those one in a million side effects and even ones that haven't been previously documented. Often very serious, scary ones. Plus allergies. Allergic to NSAIDs and narcotics don't work at all, just have side effects so I take nothing even after surgery. I have a great fear of meds and take no OTC meds. So I felt for you when reading about your side effects. But like you said, when you have multiple disorders sometimes it can be hard to assign symptoms and side effects to the right cause.

I hope you get some answers on the 6th and all of your issues can be resolved. Scary to have new things popping up. Yesterday, my neurologist told me she often asks God if I really need to have so many different challenges and can he lighten my load just a little? I'll pray the same for you. I always keep in mind that there are a lot of people worse off. We're still here!

Blessings to you as well.

Thank you!

Talking about coughing! I will never forget the day the family was together and of course, I would cough. My son in law asked are you sick? And my daughter said; “oh no! Mom isn’t sick she’s had this cough since as far as I can remember!” It really hit me then.

Everything in life is a process….💙

Will keep you posted!

Blessings!

Thank you for sharing your experience. As I read your story it seemed just as complicated as mine.

The Sandostatin has controlled my cough and while I still feel fatigued, it is much less. You mentioned hair thinning ….it’s interesting because I noticed this too and so did my friend who is also my hairstylist.

Because I am Towards the 5th mark of treatment and have the chronic stomach pains, Just recently I underwent chest X-ray with contrast, abdomen Ct scan and guided thyroid biopsy. The nodule on my thyroid has increased its size and two small ones appeared. My liver is oversized and the radiologist leans towards the hepatocellular disease and my gallbladder has no stones, but has “slush”.

I received a call from a nurse practitioner of the oncologist department where I work (United Healthcare) and she is insisting that I go to Mayo Clinic.

My oncologist has told me that in his years of experience, I am the most challenging patient he has ever had.

My journey for the past year and the years that lead up to it, have been interesting.

My next appointment with my oncologist is on the 6th. I will know more then.

Again, thank you for sharing.

May you be blessed.