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Has anyone been diagnosed with POEMS syndrome?
Blood Cancers & Disorders | Last Active: Dec 1, 2024 | Replies (17)Comment receiving replies
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.
Replies to "My partner is now 16 months into his POEMS journey. He had radiotherapy for 4 weeks..."
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Thanks Maggie for your informative response. What the future holds is on my mind more than it should be…but as we try to get through each day, I also try to plan for the future.
I was initially fearful we would have to move because we live in a condo with 15 steps to bedroom/ full bath, but we ended up getting a stair glide. Is that an option for you?
Also getting a hospital bed on our main level cut the number of transfers in half and made the surfaces he can transfer to more varied. Surprisingly he likes the hospital bed, not just for the bed mobility/ transfer ease, but also the comfort as I got a topper.
I know that it can take up to a couple of years for the nerves to regenerate and probably not everything will return…at least that is what we were told. I’m glad your partner is seeing improvement.
He been approved as a candidate for ASCT, but they said he was too weak to tolerate the chemo etc so they wanted him to do the immunotherapy for 4 cycles to stop the progression and allow him to get stronger. We hope that continues to be the plan.
Take care and if you feel like sharing any more in the future, I certainly would be interested in hearing from you.