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[Penney B.]

Hi! My name is Penney. I am 59 and was diagnosed with a Thymoma in 2014. Nine rounds of chemotherapy and open heart surgery followed. The tumor had however, metastasized, and not all could be removed, thus a debulking procedure was performed...meaning they removed as much as they could. Two years later one of the tumors had completely wrapped around my superior vena cava, causing an 80% stenosis. All bloodwork up to and including this point showed normal hemoglobin levels. In December I had radiation therapy on the tumor surrounding the SVC. I was told by radiology that the thymoma could have been growing for 15 to 20 years. I was admitted to the hospital a week after radiation was completed with a burned esophagus which left me unable to eat or drink. I was given two units of blood. By the end of January I was exhausted, dizzy, unable to climb stairs and had passed out. Back in the hospital the first week of January, a bone marrow biopsy revealed a diagnosis of PRCA. Prednisone was prescribed but did not work. I have been transfusion dependent for the past year. A ferritin test done a couple of weeks ago showed a level of 1,438. The nurse practitioner in the oncologists office recommended Exjade. I should mention that we are on vacation and my oncologist from home has suggested a certain type of MRI to determine more accurately the levels of iron in my heart and kidneys.

I am curious to know if anyone else has had a diagnosis of PRCA following radiation treatment?

I am very interested to know of any NATURAL chelation therapy as I am only willing to take more drugs as a last resort!!!

My hemoglobin level varies between 7.0 and 10.5 with transfusions at +/- 3 week intervals.

[lisa3112]

Hi Penney,
I have no helpful information, just wanted to say sorry you have gone through so much! I am a nurse and I know how painful open heart surgery is, let alone all the chemo you have gone through. Hopefully someone will read this who can offer you some answers.
Lisa.