Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

I was diagnosed with this rare condition 6 years ago . I had a persistent cough and got out of breath easily . After a lung biopsy , I was diagnosed with multiple carcinoids . I have been in the care of excellent doctors at Princess Margaret Hospital in Toronto , a world leading cancer hospital . I was told no treatment, just Ct scans and X-rays every 6 months to monitor these carcinoids . Several doctors assured me this is a very slow growing condition , and the better of all possible cancers , with excellent prognosis and long life . Three months ago , they noticed one of the carcinoids started to grow . After much deliberation, they suggested I remove a lobe of my lung . They told me I could do it now or later in time . As I am 70 , I chose to do it . It was a very unpleasant surgery , but it is done and 3 months later I am perfectly fine . I will have to continue to monitor the other small carcinoids the rest of my life . Hopefully , what they told me is true , that these carcinoids rarely spread ,and only grow at a very slow rate . They told me I have many more years to go . I would love to hear other experiences.

Hello @rogo and welcome to Mayo Connect and to the NETs discussion group. I'm glad that you found this forum and that you have chosen to share your NETS journey here.

Your doctors are correct in saying that NETs/carcinoids tend to be a slow growing cancer. I have had three surgeries for carcinoids in the upper digestive tract beginning in 2003. I'm sure you are relieved to have your surgery behind you and to be feeling better now.

I would like to introduce you to another member, @melmangen, who also had a lobectomy this year. I hope that she joins this conversation and shares some of her experiences with carcinoids.

What type of surgery did you have and how long was your recovery?

This is @amd12. I wasn't actually diagnosed with DIPNECH, but I was told that I seemed to be at risk for it. So far, it hasn't developed.
@triveraderubio , good for you to be so thorough in your research and reaching out for as much information as you can get. Hope you will share what you learn with others. Best of luck with the Octreotide!

Thank you so much for your reply!

The oncologist made me aware that DIPNECH is a very rare condition, and my case is challenging.

He detailed the avenues available for treatment. However, Octreotide would be the first step, for six months, hoping the medication will suppress growth. I am always open to several other opinions as this is so new to me and symptoms are challenging.

Thoughts?

Hi Everyone.

I had my first treatment of Sandostatin LAR Depot on November 21, 2022. Side effects were quite troublesome to keep at bay. Severe abdominal pain, loose oily stool, and headaches, which lasted several weeks.

Into the third week, late evening I experienced severe abdominal pain with episodes of emesis. During this episode, I felt extremely hot and weak. The palm of my hands were red and started to itch. I developed a rash from my toes all the way up to my neck, and my face had red spider-like veins. My two german shepherds alerted my husband and he called 911. The paramedics were a bit concerned because my blood pressure was very high and I have never had it so high: 149/95 when my BP is 95/69. I did mention to the paramedics about my diagnosis and medication. I was given Benadryl and at the ER the NP ordered a steroid and a nausea medication. All blood work returned normal. The clinicians did call my Oncologist who was ok with prescribing medication for the nausea and Prednisone and to take if needed, (but was not too keen in having me use prednisone as my pulmonologist had me on 50 mg/day for 30 days after surgery). Thankfully to the Lord, I have not needed any of this medication.

To this day, it is still a challenge as to where this could have stemmed from. I recounted my steps several times and there was nothing out of the norm, which could have triggered such ailment. It is quite odd that the injection would have triggered this three weeks later, but in any event, I was told it is possible.

In any event, symptoms dissipated and my Oncologist cleared me for my second treatment, which occurred 3 days after the ER visit. It has been 9 days and I have experienced abdominal pain and headaches, but at a lower scale.

I keep researching to learn more about this uncommon condition and I am blessed to have connected with this network group.

Just wanted to share my experience, but please be reminded that everyone is different. My experiences may differ from anyone else's. Body's structure is determined and influenced by a variety of forces, and of course genetics. Our gene pool influences bone structure, predispositions, and much more.

I wish everyone a wonderful new year full of happiness and health.

Thank you for reading.

Hi Everyone.

I had my first treatment of Sandostatin LAR Depot on November 21, 2022. Side effects were quite troublesome to keep at bay. Severe abdominal pain, loose oily stool, and headaches, which lasted several weeks.

Into the third week, late evening I experienced severe abdominal pain with episodes of emesis. During this episode, I felt extremely hot and weak. The palm of my hands were red and started to itch. I developed a rash from my toes all the way up to my neck, and my face had red spider-like veins. My two german shepherds alerted my husband and he called 911. The paramedics were a bit concerned because my blood pressure was very high and I have never had it so high: 149/95 when my BP is 95/69. I did mention to the paramedics about my diagnosis and medication. I was given Benadryl and at the ER the NP ordered a steroid and a nausea medication. All blood work returned normal. The clinicians did call my Oncologist who was ok with prescribing medication for the nausea and Prednisone and to take if needed, (but was not too keen in having me use prednisone as my pulmonologist had me on 50 mg/day for 30 days after surgery). Thankfully to the Lord, I have not needed any of this medication.

To this day, it is still a challenge as to where this could have stemmed from. I recounted my steps several times and there was nothing out of the norm, which could have triggered such ailment. It is quite odd that the injection would have triggered this three weeks later, but in any event, I was told it is possible.

In any event, symptoms dissipated and my Oncologist cleared me for my second treatment, which occurred 3 days after the ER visit. It has been 9 days and I have experienced abdominal pain and headaches, but at a lower scale.

I keep researching to learn more about this uncommon condition and I am blessed to have connected with this network group.

Just wanted to share my experience, but please be reminded that everyone is different. My experiences may differ from anyone else's. Body's structure is determined and influenced by a variety of forces, and of course genetics. Our gene pool influences bone structure, predispositions, and much more.

I wish everyone a wonderful new year full of happiness and health.

Thank you for reading.

Hello @triveraderubio

I appreciate your sharing this experience. While this was frightening, you were wise to realize that everyone responds to medications differently. As Colleen, @colleenyoung, asked, I'm also wondering if your oncologist gave you any suggestions for dealing with a similar response?

Have you approached your doctor about being tested for medication sensitivity?

Thank you for your response @collenyoung, @hopeful33250.

I think I hit “send” before finishing my email, my apologies.

I have not been tested for medication sensitivity, but will address with my oncologist. It has been 15 days from my from my second injection and just last night I was awaken by a nauseated sensation had two episodes of emesis, but no rash. Dr Aijaz had cleared for the second injection. I have an appt this month and will discuss medication sensitivity. I do have medication to control the nausea, however, do not want to overwhelm my system with more medication. But I feel a lot better tonight.

Once again, thank you.

@triveraderubio

I appreciate your update. I'm looking forward to hearing from you again. Will you post an update as you have more questions or concerns?

Has anyone else been diagnosed with this condition?
Please share your experiences….

Thank you!