Help with family friend

Hi! I have a family friend who is experiencing several medical challenges related to a macroadenoma they have. They are based in Philly. They are from a country outside the US so it’s been challenging trying to figure out care. They are losing trust in their physicians and feel like they are being treated like a lab rat.

I’m trying my best to help but am also lost. Here’s a timeline of their care so far. Does anyone have any advice or help? Also if anyone knows any support groups I can point them too, I would love that. They are starting to understandably struggle mentally as well and I think it would be great if they had people she could connect with.

October 2022: Diagnosed with macroadenoma and acromegaly. MRI revealed a tumor affecting prolactin and growth hormone.

December 2022: Surgery removed half the tumor through the nose.

January - March 2023: Experienced no periods and developed diabetes insipidus. Tumor remained the same size at 3.3 cm, and growth hormone levels stayed high (around 950).

March 2023: Periods returned.

May 2023: Heavy period lasting 11 days.

June 2023 onwards: Periods became more regular. March 2023 - June 2023: Received Lanreotide (Somatuline) 60 injections (missed May).

July - September 2023: Increased Lanreotide dose to 90.

October 2023 - March 2024: Increased Lanreotide dose to 120 (missed January dose). IGF-1 levels fluctuated, going from 952 to 700 and back up to 950.

March 2024: Stopped treatment as insurance deemed the medication ineffective.

April 2024 - Now: No treatment. Tumor has remained the same size, but IGF-1 levels reached 1083 by August 2024 (highest ever).

Current Treatment Considerations: Signifor (similar to Lanreotide but has a high risk of diabetes in 66% of users). Radiation with daily medication to suppress IGF. Surgery: Doctor is cautious due to previous side effects.

We are seeking the best medical treatment moving forward, considering the options and associated risks.