Has anyone been diagnosed with POEMS syndrome?

It's too late for my wife but I just needed someplace to tell our story about POEMS Syndrome. Maybe it could help someone else. I'm also looking for answers as to what triggered it (I'm an engineer everything has cause & effect).

My wife was always healthy and tried very hard to stay that way. She never smoked or was exposed to second hand smoke. She never drank or used illegal drugs almost never used prescription drugs. She (we) ate a lot of organic food and avoided processed foods. She ate "low carb" for most of her adult life due to the fear of becoming diabetic. Diabetes killed her father, her grandfather and many aunts & uncles and ran rampant in her family. She avoided gluten which also helped her knees feel better. She avoided all chemical expose - makeup, hair color, weed killers, etc. and even stored her baking supplies and leftover food in glass jars to avoid plastics She was an avid walker and rarely missed a day of walking, rain or shine. This is the last person on the planet that you would ever expect to get sick.

In the spring of 2023, my wife started complaining about her ankles being swollen (edema) at night. Hey, we were both 60 years old, commuted (together) 2.5 hours a day and had mostly desk jobs so we attributed it to that. Her ankles would be fine in the morning.

In August of that year, we were moving a picnic table and she felt something in her chest "pop". It hurt for a few days but not too terribly bad. In the next few weeks, bruises appeared on her chest which we didn't think too odd because of the injury - we thought that she had torn some cartilage. The bruising changed somewhat over time and her chest slowly started to darken up including her left breast and eventually most of her right. It never did go away (think S in POEMS). A few months later, her collar bone began to protrude slightly, forming a small divot underneath. It remained that way for a few months but then slowly filled in with soft tissue, albeit with a bit of a pinkish cast. Other then the discolorations, her chest looked fairly normal again.

Then the neuropathy started in her feet and lower legs in early 2024. With her family history of diabetes, we purchased a glucometer and checked her fasting blood sugar every morning. It was almost always on the high side of normal (less that 120). It started to take more effort to walk and she stopped driving in the late spring because she couldn't move her feet fast enough. She continued walking daily though but required the help of a walking stick later in the year. Stairs started to become difficult due to weakness in her legs.

These symptoms continued to worsen very very slowly (think frog in the boiling water) throughout 2024 into 2025. Occasionally, she would complain of slightly blurry vision or mental fog but hey, we're 62 now, right? The real problems set in the fall of 2025. That's when when the swelling in her ankles no longer went away at night and her lower legs and feet started swelling too. Then the ascites set in around the holidays. She needed help getting her pants, shoes & socks on because she could no longer bend over enough to do it herself. We thought that it was SIBO and putting her on a low FODMAP diet helped with the discomfort. (Google searches can be a TERRIBLE thing. Go to a doctor!)

Before you think that we're both morons for not going to a doctor, please understand that she was very averse to chemicals, medications and anything artificial. In her mind, doctors only prescribe medications and she did NOT want meds. Our children and I all begged her to go but that just wasn't going to happen.

Finally, at the end of March 2026 when she couldn't get around anymore, she reluctantly agreed to go to the doctor. He immediately sent her to the local hospital for tests where she was admitted and had 4 liters of fluid removed (paracentesis) from her abdomen. She was transferred to the OSU Medical Center (The James Cancer Institute) the next day where she spent the next 13 days and had an additional 5.2 liters of fluid drained. They ran every test imaginable - several CAT scans, a PET scan, a bone marrow biopsy, dopplers and enough blood work that Dracula would be envious. They also biopsied the spot on her chest that I mentioned previously. That was the only thing on the PET scan that "glowed" with any significance other than a few very dim lymph nodes. The bone marrow biopsy didn't show anything remarkable but the biopsy of the spot on her chest indicated a "plasma cell neoplasm" which was rather unanticipated. She was released from the hospital on 4/10/26.

On 4/21 we went to an appointment with a hematologist/oncologist who reviewed all her test results and thoroughly questioned her for nearly an hour before diagnosing her with POEMS Syndrome. Yep, she had all the mandatory symptoms and several of the additionals. On the way home, she was so miserable because she needed another paracentesis that we went directly to the local ER. Again, she was admitted and sent back to The James the following day. There they drained another 5.2 liters and put her on slow dialysis because her blood chemistry was so far off. Radiation treatments of "the spot" were scheduled to start on Tuesday but at that point we knew she was in major trouble. The following Sunday they drained 7.2 liters. On Tuesday, the day radiation was scheduled to start, just 166 hours after receiving the POEMS diagnosis, my best friend was gone; cardiac arrest. We were friends for almost 53 years and we were married for over 40. It was a good run. I miss her deeply.

POEMS Syndrome is such an unfair disease - no known cause and she seemed like someone who never should have gotten it or any other illness. My own theory is that COVID, which we both had in December 2020 or some other virus disrupted her immune system badly enough that it could no longer fight off whatever imbalance causes POEMS. I've heard that it's actually an autoimmune disorder.

That's our story. My advice: edema, neuropathy, skin discoloration and ascites are nothing to toy with. GO TO THE DOCTOR! If my wife had done so three years ago, she might be here today.

Comments or questions are invited but please don't lay any guilt on me. I've already done enough of that myself.

My maternal uncle saw his initial signs of POEMS like 6 years ago.
No body knew what has been going on his feet would go numb and often fell down riding his bike or walking upstairs. He consulted many many doctors, as many doctors as many reasons, like blockage of a blood vessel, plasma defects even blood cancer was just assumed.
He was on medications and could still walk with the help of others by the end of 2021 and then all of a sudden He stopped walking, as time passed he couldn't sit on his own, no hand movements no leg movements. He had his consultations going on from AIIMS Delhi. For a wide 6 months he was there. And a lot of medications were performed tests were taken and later POEMS was confirmed. Treatment started but it was too late to even barely recover.
He lose all his abilities to sit, to eat to drink, was completely depended on people around him.
His disease grew wider and wider and took many phases a lot more new kind of diseases of lungs and stomach came out of nowhere. And last year in November he was declared brain Dead.
Took his last breath on 14.11.2025 at Only 43 years old with a wife and two kids left behind.

The awareness of this disease is no where in india. No Treatments available. Many people shall be made aware. They can't stop what's coming to them but atleast the diagnosis and the medications can be given

@lifeagain Thanks so much for the update on your husband! I’m so relieved for you both that he could go through with the transplant.
Just to let you know the first week or so can be a little rough with some of the side effects from the pre-conditioning chemo. He might have some nausea and extreme fatigue as his blood numbers drop. This is to be expected! But then as soon as the blood cells counts begin to rise again after engraftment, especially the neutrophils, he should pick up steam after that. So hang in there!
Please keep me updated. ☺️ And let me know if I can there’s anything I can help you with, ok?

@loribmt Thanks so much Lori! Yes he has. He has started the process. The team put us to ease, they seemed to have had a solid plan. He had high dose chemo --Melphalen and underwent the transplant yesterday. Thanks so much for replying. Because POEMS is so rare it can be difficult to find support.

@lifeagain Welcome to Connect. From my understanding having an autologous stem cell transplant (ASCT) for POEMS can be successful in the management of the disease. It looks as though your husband’s SCT team is comfortable with moving ahead with harvesting his blood stem cells and going ahead with the ASCT.
Basically what happens is the conditioning chemo, after the harvest but right before the transplant, will help cleanse his marrow/blood stream of any remaining cancer cells. After that, your husband’s preserved stem cells will be reintroduced through a transfusion back into his blood stream. These blood stem cells will eventually find their into the bone to help restore his bone marrow. Once inside the stem cells will mature into various blood components, essentially giving him a fresh start. The VEGF level should, in theory, be much lower after the transplant.
Have you and your husband talked to the SCT doctor to explain your concerns?

My husband was diagnosed with POEMS last year underwent 4 cycles of carfizomis, lenalidomide. dexamethasone) in march. VEGF dropped significantly but soon after increased. We changed providers and went to different facility was given 3 cycles of low dose chemotherapy (forgot names) despite this VEGF increased to over 4000. He is scheduled for a transplant in the coming days, I am reluctant due to the very high VEGF and possible complications.

Does anyone have any experience with this?

@cat59, what treatment(s) did you have? How are you doing now?

@jx2young11 Thanks for sharing your experience,may consider autologous stem cell transplant if u are a candidate for that,so far my experience has been great after the transplant,every case is different but I had a good neurological recovery in my extremities starting slowly but better by the day.

New to group. Originally diagnosed with Guillion Barre syndrome in january of twenty twenty five. Hospitalized and had plasmapheresis treatments and showed great improvement for ten weeks. Then, plummeted and went through treatments again and continued to get worse. Was able to get into Mayo Clinic in Rochester in June of this year. I was diagnosed with POEMS syndrome and then Plasmacytoma cancer. Steroids, chemo and all the other meds have helped me get stronger but my hands remain at 50% and I have no reflexes from my knees down. I use a wheeled walker in the house, wheelchair for everywhere else. Afo braces do enable me to walk with hiking poles. Not real coordinated, think Frankenstein walking in downhill ski boots. I often wonder, how long the nerves can go without getting signals before they just cannot receive signals again? I am coming up on a year

@mak21 I'm so happy for your recovery. I wish I had that option when I was first diagnosed. I'm going to research to see if it's to late to try it now! Keeping my fingers crossed that I can at least try it! Thanks for sharing your results, it means a lot.