Replies to Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into…

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Caregivers | Last Active: Jan 17 9:06pm | Replies (24)

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@colleenyoung

Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into this discussion who have experience with POEMS syndrome like @gratefulone @craigkopcho @bburleson1 and @casseth02

Sandy, can you describe more what you mean that your husband's recovery has plateaued? He was making progress and now it's at a standstill, but not getting worse?

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Replies to "Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into..."

sandy70yikes | @sandy70yikes | Nov 10, 2020

Forgot to mention it is not getting worse

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consol | @consol | Jan 16 9:37pm

My husband was diagnosed with Casttleman on 2018 and 2019 with POEMS, He had a Stem cells trasplant. He was fine but on April of 2022 He start gwtting the Kappa Chain high, His oncologist SAYS " your tests results are NORMAL" but I don't stop insisting for more studies and tests. Finally He got an appointment again with the Stonford Specialist and she is going to start treatment again. His neuropathy is getting worse, he has to walk with a walker. The POEMS not have a cure but the stem cells trasplant make slow down the desease. I'm his caregiver and is hard to see him getting worse in his walk and managing his balance. It is very hard for the hall family. Casseth02 God bless you and give you the strength to keep going. 🙏

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