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Has anyone been diagnosed with POEMS syndrome?

Blood Cancers & Disorders | Last Active: Jun 7 8:20pm | Replies (30)
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Profile picture for lifeagain @lifeagain

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?

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Replies to "My husband was diagnosed with POEMS last year underwent 4 cycles of carfizomis, lenalidomide. dexamethasone) in..."
Lori, Volunteer Mentor | @loribmt | Jan 29 10:06am

@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?

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