My husband has poems. It was diagnosed 3 years ago at Mayo Rochester. He seems to have plateaued in his recovery.

Mother started getting ill 2018 and was diagnosed with everthing but poem. the treatment she was given was ivig, that was not helping, so we visited the Mayo clinic May 2021, and there was diagnosed with Poems. It has been an awful journey for her because the body has broken down so much, on top of that she fell and had a brain injury right before she was prepared to start her treatment plan in June 2021. /right now, she is in the hospital with a rash that has covered the entire body, except the face. Has anyone seen this if taking the Ravlimid

@amandaa @sandy70yikes My husband, Eric, was diagnosed in January with POEMS after more than two years of trying to find causes for very diverse symptoms and growing weaker every day. He went from 170 lbs. down to 140 and by this past December was unable to walk without a walker and needed help with all his ADL. He began weekly treatment with Daratumumab and Hyaluronidase on Feb. 6. Since that time I have noticed very small signs of improvement and his blood markers have improved, but the improvements are so small that he thinks I’m just making them up.

The oncologist wants to add another drug to his chemo cocktail, but she feels he is too fragile to tolerate it now, so despite his lack of appetite, I am trying to fill him with as many calories as possible to build his strength. He is constantly tired and would prefer to sleep all day. I believe part of this is depression. His lack of energy and inability to do much of anything on his own means that he lacks a sense of purpose and constantly chastises himself for being lazy. (Yes, he does have a therapist and is on an anti-depressant.)

I keep trying to find a support group he could attend to at least be able to talk with others in similar circumstances even if they don’t have his exact disease. So far nothing.