Brother newly diagnosed needs answers!

[greenepanda]

My brother (35) was just diagnosed with MDS, RAEB 2 but we don't know his IPSS score yet. How long does this take? How detrimental is this to learn more about his options? He has started Videza but is now facing a possible lung surgery due to an infection. I feel lost and confused! Any advice is appreciated.

Thank you!

[Neil Cuadra]

greenepanda,

Since your brother has presumably already had at least one bone marrow biopsy for diagnostic purposes, and a "white count differential" done on his blood tests, the information needed to compute his IPSS score should be available as soon as the cytogenetics (chromosome study lab results) are back from that test. The score depends on his chromosomes, bone marrow blasts, and results of his blood tests.

The way I see it, the more information you have the better you are able to make the right treatment decisions. His specific risk level may narrow his options but that's what you want - to know the best approach to take.

Infections are a major concern for many MDS patients and must be dealt with promptly. I hope they can get this one under control.

It's no surprise that you feel lost and confused in the world of MDS. Most new patients and family members feel the same way. Asking questions is the recommended treatment for confusion!

Is your brother being treated at the Mayo Clinic? It's great to have such an excellent facility nearby so I hope he's able to take advantage of the MDS expertise they have there.