I have an SDHB mutation: c.136C>T (Arg46x). I have had several tumors. The first was removed at age 18. It took the doctors 10 years to find out what was wrong with me. It had grown large and my adrenal gland and kidney had to be removed along with it (left side). The second and third tumors were found at the same time at age 33. One was in my left hip (femoral head) and was malignant. I had a partial hip replacement to get rid of it. The other one was on my vagus nerve in the left side of my neck. I have nerve damage to my vagus and hypoglossal nerves as a result of that surgery. I had an MIBG treatment at UPENN in 2008. I also had two pheos removed from my liver at the NIH in 2008. I have several bone lesions (head to toe) and metastases to the liver and other soft tissue. In 2009 I started CVD chemotherapy. I have a daughter and a son.

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