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Jul 5, 2017 · POEMS: An expertise in the rare leads to a rare opportunity in Hematology

I underwent a stem cell transplant at Mayo for POEMS. My feet use to swell up like balloons. I still see some swelling but it is no where what it use to be. I love Mayo and their research.

Jul 5, 2017 · Did anyone go through a stem cell transplant? Lymphoma in Blood Cancers & Disorders

I am feeling better. I am still able to work but I am a bit slower than I use to be. As for my Lymphoma it isn't causing any serious problem now. I don't have cold chills or night sweats. POEMS is my primary issue. My feet at one time look like balloons due to POEMS. I have issues with bone ache, muscle ache and Neuropathy. No one can say if the Neuropathy is caused by the disease or the Chemotherapy used to treat POEMS. Dr. Sher in Jacksonville is overseeing my case. I know of no one else that has both disorders: POEMS and non-Hodgkin's Lymphoma

Jul 2, 2017 · Did anyone go through a stem cell transplant? Lymphoma in Blood Cancers & Disorders

My issue began with tremors for which I sought the services of a local neurologist. I was prescribed Primidone and sent in for blood work. The blood-test had the signature of Lymphoma. I was told to see a hematologist quickly. A subsequent PET scan showed evidence of cancer. Later a needle biopsy confirmed small cell Lymphoma. Subsequent CT scans and blood work were utilized to monitor Lymphoma. At that time I had swelling going on in both legs and feet. The doctor could not tell me if the edema was related to Lymphoma, To make a long story short, my oncologist retired and I set about to find another doctor. Upon finding the new doctor, we had the traditional get to know each other conversation. The new doctor, who was seeing me for Lymphoma, stooped me in the middle of the conversation and said “I think you have POEMS syndrome”. The indicators of POEMS were positive and I was prescribed Revlimid (oral Chemotherapy) In the midst of the oral chemo, that doctor moved his practice and referred me to Mayo. To put POEMS in check, I underwent an autologous stem cell transplant. I was told that the transplant could take out the Lymphoma. I haven’t had a scan post transplant. The lymphoma was not my primary issue. POEMS was the reason for the transplant. When I go back, in another 90 days, I was told that I would get another CT scan to see if the stem cell transplant had an effect on the Lymphoma. POEMS and lymphoma are two different things but I think of the transplant as killing two birds with one stone.

Jul 2, 2017 · Did anyone go through a stem cell transplant? Lymphoma in Blood Cancers & Disorders

I have two conditions: POEMS syndrome and nonHodgkins Lymphoma. I endured the the stem cell transplant for POEMS. As for Lymphoma the doctors believe they stifled the Lymphoma. I will know more about the Lymphoma when I get another CT scan in about 90 days. As for the transplant procedure, they will put you through a battery of tests before they even consider doing it. It is risky but I don’t think any other medical entity is as cautious as Mayo. This is my opinion only but if a Mayo doctor says you need a transplant, you need a transplant.