I’m particularly interested in hearing from others ( caregiver or patient) who are currently going through (or completed) the treatment for POEMS Syndrome.
My 73 y/o husband was recently diagnosed with POEMS Syndrome and has completed his first month of immunotherapy (lenalidomide/dexamethasone and daratumumab/hyaluronidase) with 3 more months to go. The current plan is an autologous stem cell transplant at the completion of the immunotherapy.

He did have lenalidomide dosage decreased for the 2nd cycle secondary to neutropenia ( resolved) but otherwise I believe things are going ok.

Prior to the immunotherapy, I was able to keep him from being bed bound. The polyneuropathy was advancing rapidly and once treatment started, he was too weak to tolerate much time out of bed for the first month.

Currently his endurance has improved to the point that he
requires mod/max assist with transfers and can ambulate short distances with wheeled walker with mod/ max assist. He is of course still in bed a lot of the time.
He is receiving PT at home as it was unsafe for me to assist him alone with walking secondary knees buckling and weakness in his upper extremities.

I’m a retired HHPT which has helped considerably with some aspects of his care, others not so much.

He was a “seemingly” healthy, active ( rode his bike 2 1/2 hours and worked out a few times per week) individual, with few medical problems other than cardiovascular disease.

That’s our story so far…hope to hear more about yours.