@bromlj1 - I’m deeply sorry you’re navigating a high-risk MDS diagnosis—it’s a lot to take in. Your chromosomal abnormalities (monosomies 15, 18, 20, 22, and missing 5, 7, 17) and 87% TP53 mutation indicate a complex situation, often linked to a higher risk of progressing to AML or complications like infections. What are you most concerned about at this time? Your symptoms—belly cramping, fever, chills—likely stem from low blood counts or spleen enlargement, common in MDS. Having a stellar care team is a huge asset, and here are some thoughts to help you manage the fear and complexity.
High-risk MDS with TP53 mutations and complex karyotype can feel overwhelming due to its tougher prognosis, but outcomes vary. Your team is likely using tools like IPSS-R or IPSS-M to guide treatment. Options may include hypomethylating agents (azacitidine, decitabine), though TP53 mutations can reduce their effectiveness, or clinical trials targeting TP53 (e.g., magrolimab or venetoclax combos). Has your team reviewed these topics with you? Stem cell transplant might be considered if you’re eligible—ask about this. Ensure your symptoms are addressed (e.g., imaging for spleen issues, infection checks). Emotionally, the uncertainty is heavy; connecting with the MDS Foundation or a counselor can help. Pace yourself with information—focus on one step at a time, like “What’s my next treatment?” You’re not alone, and research is advancing rapidly. Lean on your team, and let me know if you want specifics on trials, support, or just a space to process