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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.


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Replies to "Thank you so much for your reply! The oncologist made me aware that DIPNECH is a..."

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.