Any one with Neuroendocrine tumors getting the shot once a month?

Interesting, hope the lanreotide works better. My husband had the rash before his shots, so not a reaction to the injection. He has no side effects with the Lanreotide and other than the rash, feels "normal"?

My husband took Octreotide shots for about 18 months & some months after the shot he would get a severe rash on face & neck , it would look like hives & a horrible outbreak of acne, he would not leave the house . The dr. said not to common with the shot but we showed him a picture at his worst break out, he said it could very well be from the shot & told him to use hydrocortisone cream . It would take a couple days for it to get under control but then come back as he took the shots , so now he has been switched to another shot of Lanreotide & hardly any break outs

My husband took Octreotide shots for about 18 months, side effects slightly looser stools & then started breaking out into face & neck rashes so he was switched to Lanreotide. He has been fine with this new shot . We have been fighting this since 2021

I was diagnosed with nets in April of 2020. The nets were in my right lung. The lower two lobes of my right lung were removed. I have no idea how long I had the nets before my diagnosis. A couple of years ago an MRI detected that the nets were in my liver and I receive Lanreotide shots every 28 days. I started having itchy body rash issues about 30 years and continue to have the itchy body rash issues to this day. I saw an allergy doctor a couple of times over the years, they drew grids on my back, pricked my skin with various substances, charged a considerable fee and came up with no conclusions. While I have no proof of this whatsoever, it is my opinion that the undetected nets caused and continue to cause the rashes. My rash treatment, which works ok, is wearing only 100% cotton clothes and taking zyrtec or generic forms of it as needed. I hope your dermatologist has a solution to your issues. Best wishes!

I was diagnosed in Jan. with pancreatic tumors in the tail of my pancreas that has spread to parr of liver. I have had 2 injections of Lanreotide with 1 more to go and then reassessment with CT scan. I feel normal with good energy and appetite etc. The only symptoms I seem to have related to the Nets is an itchy body rash. Has anyone heard of this? I'm seeing a dermatologist also but nothing conclusive yet.

Sherry, your experience sounds exactly like mine. I have been getting injections of octreotide every 4 weeks, and also went to memorial Sloan Kettering for 4 infusions of lutathera. Except for minor fatigue, and would never know that I have neuroendocrine cancer in my pancreas that has spread to o my liver.

How are you doing?

Sherry,
Thank you, andI wish the same well wishes for you! 🙏🏻

Hi! I’m so sorry to hear about your husband’s diagnosis. I believe in asking as many questions as possible and finding out as much as you can about this horrible disease. I think in order to receive Lutathera there are some criteria that the tumors/treatments must meet and what stage the cancer is at. I am stage 4 and the cancer has metastasized to my liver so the Octreotide wasn’t working alone. I would definitely ask his oncologist about this newer treatment option. Until then, best wishes and prayers to you both for a healthy, healing new year ahead!

My husband was diagnosed with a NET a year ago. His doctor has only prescribed sandostatin (hope I am spelling that correctly). Never even really mentioned radiation. I know it does depend on the individual’s specific circumstances, but I am just wondering if maybe we should inquire about it since that seems to be pretty common in others who have the same diagnosis. Can you share any additional information that might help us?

He tried everything. Xermelo is the only medicine that worked.