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9/14/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated on Karla's health over the past year and for the journey ahead. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Almost 1 1/2 years ago, Karla began loosing weight and had no appetite. Doctors believed she might be depressed after a pretty challenging year. Six months after loosing her appetite, she began to run low grade fevers and fatigue hit daily. In August 2015, she noticed a swollen lymph node under her left arm. This led to an ultrasound which exposed a mass under her right clavicle. After a really long journey, she had surgery at the end of November for a excisional biopsy. The biopsy revealed a VERY rare diagnosis of Castleman Disease - unicentric type which is curable given doctors can remove all of the mass. A second surgery was completed the very next week. Doctors removed the mass, her right jugular vein and 15 lymph nodes surrounding the mass in hopes of removing all of the disease.
In January 2016 - just 4 weeks after surgery, all of Karla's symptoms returned. Her care team at University of Colorado Medical Center in Denver decided to try a 9 week chemo treatment to attack any remaining cells. She completed the treatment at the beginning of March with no reduction is symptoms. She was then referred to MD Anderson Cancer Center in Houston, where they have 2 doctors specializing in Castlmans Disease.
After 2 weeks of visits at MD Anderson, doctors found a blood marker, an iL-6 level that was elevated far above what it should be. iL-6 is a cytocine our bodies produce to help fight disease, but too much of it becomes a promoter for Castleman's Disease. The normal level of iL-6 is less than 5. Karla's was registering at 262. Her care team believes this to be causing her symptoms and is also an indication that she still has the disease which means it is now what's classified as Multicentric Castlemans Disease. This type is no longer curable, just treatable. Multicentric Type metastasizes and creates masses in any area of your body and can attack the bone marrow. Once it begins to attack major organs, it is difficult to treat. Needless to say, this is NOT the news she had hoped for.
She was given 4 weeks of intensive treatment on a maintenance chemo drug called, Rituximab. Her symptoms immediately went away and she felt better than she had in almost 2 years. She had a great summer and began the new school year with a 3 month follow-up at MD Anderson. Her care team was encouraged by her response to Rituximab, but also wanted us to know this indicates that her diagnosis is correct - Multicentric Castlemans Disease.
The plan moving forward is to maintain her symptoms using Rituximab every 3 months. She will be scanned during these times as well. Pending any positive scans, she will remain in treatment for 2 years and then they will take her off of the Rituximab and wait for her symptoms to return. At that time, if her scans are still clear, they will need to start heavy hitting chemo to try and attack the disease. Should a scan reveal a mass in any area, doctors will attempt surgical removal and then follow-up with chemo and radiation.