Neuroendocrine Tumors (NETs) Support Group

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Comment

I have pNET grade stage4 with liver metastases. I have not noticed any swelling. I am...

https://connect.mayoclinic.org/comment/883583/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

Comment

Lanreotide monthly since dec 2023. NET currently stable after scan in May . Diagnosed in Oct...

https://connect.mayoclinic.org/comment/1104370/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2024

Comment

Sounds like you're feeling really good, which is awesome. I suspect you can go to a...

https://connect.mayoclinic.org/comment/1221351/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2025

Comment

I use a heating pad on the injection site after lanreotide and it dissipates the lump....

https://connect.mayoclinic.org/comment/1257718/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2025

Comment

Of course I’m not a doctor, Kim’s case is after 9 months of chemo, she had...

https://connect.mayoclinic.org/comment/877443/

Discussion: Is it common to start on Lanreotide with no known tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

Comment

@dbamos1945 Thanks for sharing. Great to hear PRRT was working for you it is likley my...

https://connect.mayoclinic.org/comment/1425169/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

Comment

I get the injection monthly. They warm the lanreotide and alternate the sides where they inject....

https://connect.mayoclinic.org/comment/1405171/

Discussion: Lanreotide shot given too fast, any side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2025

Comment

I have been on lanreotide for more than a year. I have no dietary restrictions. My...

https://connect.mayoclinic.org/comment/1275869/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2025

Comment

Similar to my story! Except I also had endometrial cancer (simultaneous surgery in February 2023). So...

https://connect.mayoclinic.org/comment/1105901/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2024

Comment

Hi, thank you! We did meet with the NET specialist. Still wants to give my mom...

https://connect.mayoclinic.org/comment/311789/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2020

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