Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

@triveraderubio, that must’ve been frightening. Will you have further treatments of Sandostatin LAR Depot? If yes, what precautions has your team recommended? Have you ever been tested for medication sensitivity, pharmacogenetics?

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 @amd12,

I hope you are doing well. Have you made any treatment decisions?

I had a lobectomy. They did not crack my ribs to do it. They did it with 2 small holes in back with robot assistance. The first few days were horrific . There was a big tube inserted and I think it did nerve damage as I still can feel the pain. . It took 3 months for me to be able to go back to normal living.

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?

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.

I forgot to add that the youngest carcinoid patient I have met & briefly know was a young teen, around 15, who lived in a rural area (at the time), Yorktown. My attempts to keep track of her have not been successful. I hope if she is now an adult, she is healthy. I think of her so often.

I was diagnosed with carcinoid cancer in 2003. I am still receiving 1 sandostation injection every 2 weeks. I originally had a 'full load' in my liver and was down to around 102 - 103 lbs. My oncologist (who was great but not an endocrinologist specialist) tried to 'find the cancer' he was convinced I had. After I had to pay $20,000 for a 'special nuclear' test (which turned out to be negative), hearing the results caused me to have a very strong 'carcinoid attack' where I turned beet red from what he said. He then grabbed me and told me we had an endocrinologist who was a 'specialist' in what he thought I had. He was correct. I finally received a diagnosis a few weeks later where Dr. Vink told me I had the highest 'urine sample count' he had ever seen. He proceed to put me on a pump 24/7 with 2 Sandostatin injections every 2 weeks. My insurance screamed but it saved me along with the efforts of an interventional radiologist who clear my liver of multiple tumors. I still receive 1 injection of Sandostatin every 2 weeks. Since I have an unknown primary, I can never be 'cured'. The only place I actively feel my flushing is when it goes down my back. It is difficult in some ways for me since the Onco Started with in 2003 retired and my current one seems to rely on nuclear imaging to see 'tumors'. My primary is estimated to be very small but very productive. I try and avoid foods that create a negative reaction for me, take a ton of (recommended by the original specialist) nutritional supplements. But that is okay with me. I'd rather have more time. I put make-up on my 'red splotches' on my skin and try to think positive. The Onco practice I go to really does not have a Carcinoid Specialist but my primary care doctor makes sure I stay breathing. Years ago there was a support group here but it no longer exists. There are 2 of us 'long-term' breathers & we get together frequently. It really helps to have a sounding board. Also I must put a disclaimer that 'I apologize if I have posted this before, I've had a couple of strokes & have 'new info' memory issues. Everyone eat healthy, sleep, walk, and try to STAY POSITIVE! Sending hugs to all!

Thank you for your feedback @amd12.

I have passion to serve the public and love sharing info!

Will continue to share as much as I can!

Be Blessed and Remain Safe!

Thank you for your feedback @ce1b.

I am happy you obtained a second opinion.

The more we learn the better it is. This is why Knowledge is power…..😉

Be Blessed and Remain Safe!