Husband with POEMS Syndrome

@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.

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?

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.

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?

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. 🙏

@shaylarod were you ever able to get assistance from the rehab facility or a social worker as I mentioned in my previous post? I certainly hope all is going well for your family. Becky

@shaylarod Welcome to Mayo Clinic Connect and I’m so glad that you found us. You really have a difficult task on your hands. Let’s see if I can help and I’ll also find some members who can help you.
1. Get an appointment with the social worker at the rehab facility as soon as possible. Ask if she is able to delay his discharge for 1-2 weeks while you learn what you need and while the house is set up. Also ask if there are social workers in the community that you can make contact with.
2. Ask if the rehab facility has a ‘home inspection’ team who can come out and evaluate your home for safety. Also ask if they have training sessions for you to learn all you need to safely move your husband. Do you have the right equipment for him. The facility should be able to help with all his discharge plans, including if you will need assistance.
3. Community help: if your friends and family want to help, meals, errand, and child care would be most helpful. If home changes do need to be made, maybe a friend could start a Go Fund Me request for you.
I’m sorry, I think I’ve just overwhelmed you! Please ask more questions when you think of them.
Do you have any help right now?

Hi @casseth02, your post resonated with me. My husband is 45 years old. He was diagnosed with POEMS Syndrome earlier this year. It has rapidly taken over our lives. Prior to being diagnosed with Diabetes in the past couple of years, he was a healthy man. Last October he started to have health issues. In April of this year, he had numbness in his feet. By June he could barely walk. He had a plasma exchange in July and an Autologous Stem Cell Transplant at the beginning of August. By the time he left the hospital he had numbness in his fingers. Today, he is at a rehab facility with very little control of his extremities.
We have two young boys (3 and 7) and he is scheduled to come home this week. While I am happy to have him home, after almost 2 months... I am scared of not being able to do enough for him. How will I shower him (home limitations)? Will we be able to get him to/from Dr. appts safely? I went to rehab last week to learn and practice getting him to the car and what not. It was hard but we did it... even if he may have gotten some bruises. Ultimately, they recommended I get a lower car... at least for appointments.
I honestly am just so overwhelmed with thoughts that I don't know where to begin... Any advice?

@selmon30. Using Google translate at https://translate.google.ca/ here is the automated translation from French to English:

@luciedaco wrote:
"Hello, I have a syndrome of poems since 2004, unfortunately 2 poems are not identical, we each have our symptoms and our galleys. Personally, I lost the use of my feet and hands, too much liver, thyroid problem, diabetes and hip cancer. 10 years later the illness wanted to come back with cancer in the mandible. Since I have the poems I often have rare things like a parasite from South America…etc. Now I walk, I haven't recovered my foot elevators so I adapt and I have recovered 80% of the use of my hands. Ah yes I am Belgian!"

Is he on any treatment medicines? Mom was given Revlimid (spelling may be wrong). She has now developed a severe full body rash/hives/whelps, but started the meds a month ago with no problem