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Apr 10, 2017
I am a 41 y/o mother of three and on November 21, 2016 I was informed that after 14 years I was no longer in remission. I have chosen to use this site so that I can keep all my friends and family that are near and far informed about what is going on. Metastatic malignant paraganglioma is the name of the cancer that I have and it is a neuroendocrine cancer. This type of cancer is very rare and there isn't any chemotherapy that can "cure" it right now, chemo can only slow the cancer. Surgical removal of the tumor followed by radiation and chemo is the ideal treatment for this type of cancer, which is the plan of care I received in 2002. However, with the return of the disease this time around it has spread to multiple bones, so surgically removing all of the lesions just isn't possible. After several scans, bone biopsy, blood work and a second opinion this is where things stand: I have metastasis or metastatic lesions in my lumbar spine, thoracic spine, left scapula, left clavicle, right scapular glenoid, bilateral ribs and pelvic bones. There are some questionable areas in both lungs that can't be confirmed or ruled out as cancer. I know this may sound bad to most people but there is a bright side, this cancer is slow growing and not aggressive. After speaking with my doctors, doing research and talking with my family I've decided that I will get an infusion of zometa (this is not chemotherapy) to strengthen my bones in the hopes of preventing fractures and pain that may be caused by the disease. I will be getting scans and blood work done every three months so that the disease can be monitored. If/when my scans and blood results show that the disease is progressing or if I began to experience symptoms then "active treatment " will start to slow the disease process and provide me with relief from the symptoms. I am blessed to have MD Anderson 2.5 hours away and they've seen and treated several people with this same type of cancer and although there isn't a chemo that can cure this disease as of right now, there are several clinical trials going on that are showing some positive outcomes. I have faith that God will get me through this just as He did in 2002. I am at peace with my diagnosis and I am choosing to live my life to the fullest, no regrets, no drama, no what if's...I just don't have time for that.