Has anyone been diagnosed with POEMS syndrome?

@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.

@cat59 Technically no,here where I got my treatment they believe in upfront transplant and it was amazing,now almost 16 months post transplant Iam able to resume lot of activities of normal life other than running,still have to use foot braces though.

@mak21 Did you do any type of Chemotherapy also?