Neuroendocrine insulinoma and MDS

my mom has been fighting a pancreatic neuroendocrine insulinoma, well differentiated grade 3 tumor in her pancreas with metastasis to her liver for the last 2 1/2 years. She was recently (about six months ago) diagnosed with secondary MDS. This is extremely rare to develop treatment related MDS under treatment, but the amount of chemo she had was keeping the tumors under control for the neuroendocrine, but when her platelet levels kept dropping more and more they did a rapid heme panel to determine the cause.

We are under active treatment at Dana Farber/BWH for both cancers. The decision to treat the MDS with chemo was made so that we could try to hold it as-is (as long as possible from transforming into AML) and relieve her from being transfusion dependent which is what happened upon initial diagnosis.

I doubt anyone has experience with this presentation but we are now struggling to control her blood sugar (primary tumor) the insulinoma is very active. she can’t have cytotoxic chemo for this as it would harm her bone marrow and accelerate the MDS progression. We went back on everolimus but trying to find another drug that might help with tumor control/burden. I have been trying for drug assistance for Piqray (breast cancer drug) has some initial data in off label use for insulin resistance.

would love to hear any and all thoughts as we continue to navigate this difficult path forward. her MDS is stable today but her pancreatic insulinoma is active and trying understand new treatment options or trials