1. < Caregivers

Husband with POEMS Syndrome

Posted by casseth02 @casseth02, May 29, 2017

Hi, I am caregiver for my 53 year old husband who has had Plasmacytoma Cancer twice and POEMS Syndrome. He has been beddridden for 2 years and is now considered a quadreplygic because of the nerves dying in his body which causes muscle paralysis. He has now gotten to where he sleeps all day and all night barely waking. He chose to go hospice roughly a year ago. With these changes happening so drastically I am afraid of where he is in the process. We have 2 teens that are as worried as myself. The changes in him has happened so quikly. One day he was awake and alert the next day not. His hospice nurse and aid have been to our home as remembers nothing. If there is any guidance it would be appreciated

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consol | @consol | Jan 16 9:37pm
In reply to @colleenyoung "Hi @sandy70yikes, I'd like to add my welcome and to tag a few other members into..." + (show)
@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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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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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 17 8:53am
In reply to @consol "My husband was diagnosed with Casttleman on 2018 and 2019 with POEMS, He had a Stem..." + (show)
@consol

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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Welcome to Connect, @consol. I’m so sorry to hear that your husband’s neuropathy is getting worse even after the stem cell transplant. That’s a lot to go through… Did your husband have a transplant using his own cells or was this with a donor? What type of treatment will he be starting for his POEMS?

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consol | @consol | Jan 17 8:18pm
In reply to @loribmt "Welcome to Connect, @consol. I’m so sorry to hear that your husband’s neuropathy is getting worse..." + (show)
@loribmt

Welcome to Connect, @consol. I’m so sorry to hear that your husband’s neuropathy is getting worse even after the stem cell transplant. That’s a lot to go through… Did your husband have a transplant using his own cells or was this with a donor? What type of treatment will he be starting for his POEMS?

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Hi Lori. My husband had a Auto trasplant and He donated for another. The transplant was part of the treatment for his Poems, but the Specialist said the remaining of the disease is causing his neuropathy getting worse. He is in very good condition comparing with another patient with the same disease..Doctors said. He is going to start with the radiation, I believe and we'll see what happens next.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 17 9:06pm
In reply to @consol "Hi Lori. My husband had a Auto trasplant and He donated for another. The transplant was..." + (show)
@consol

Hi Lori. My husband had a Auto trasplant and He donated for another. The transplant was part of the treatment for his Poems, but the Specialist said the remaining of the disease is causing his neuropathy getting worse. He is in very good condition comparing with another patient with the same disease..Doctors said. He is going to start with the radiation, I believe and we'll see what happens next.

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I’m sure this is all so frustrating for your husband…and for you, knowing he’s so uncomfortable. I hope this next treatment helps him get back to some normalcy. I had some issues that had me bedridden for some time. I also had lost the feeling in both legs so it took time to get back to walking without support. One thing that helped me significantly to get my balance back when walking was working with a physical therapist to strengthen my core muscles! I wonder if that might help your husband.
Wishing him all the best with his upcoming change in treatment. Will you let me how now he does please?

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