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Has anyone been diagnosed with POEMS syndrome?
I was diagnosed in January with POEMS syndrome unable to walk or use my hands well due to numbness. I have been trying to walk with a walker but sometimes I fall due to my drop feet. It’s hard because I don’t have full function of my feet and hands. Is there any going through this right now. I don’t know what this disease will due to my body. I’m trying to stay positive.
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My partner is now 16 months into his POEMS journey.
He had radiotherapy for 4 weeks in August/ sept 2023 for a lesion on his hip. Since then he has had similar drugs to your husband. Dara + steroids+Lena to start with weekly, dropping to fortnightly. Now it's Dara +steroids monthly.
ASCT isn't being discussed - we're in the UK and this doesn't seem to be done as routinely as in the USA. And he is 67.
Physically he still can't bear weight without some support - be it a frame or therapists help. And if course, he can't walk either. He can now transfer from bed to chair with a board which opens so much more to us - he can now get in the car unaided.
He has foot drop and similar with his hands although those are getting better.
Changes have been very small and very slow. We haven't had as much physiotherapy as we'd hoped, but when he is discharged from the rehabilitation unit he is in, we'll investigate getting more frequent sessions.
We'll need to change our accomodation, as stairs are now unworkable.
We don't know what the future holds - will he able able to walk unaided? Go up steps? Drive? But it's going in the right direction and his Veg F has been coming down and is currently in the 'normal' range.
Best wishes to you and your husband. I hope all goes well with you both.