Erin Claiborne Erin’s Lymphoma Journey

First post: Sep 10, 2020 Latest post: Apr 15, 2021
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My story began in March 2018. It was a very normal weekend filled with house work, grocery shopping.  Excited  for spring weather David and I made a trip to Lowe’s to ogle over all the spring plants.  That evening I noticed a small lump on the left side of my neck, by my collarbone. Kind of unusual, I figured it was just a swollen lymph node and it would go away. I really didn’t think much about it until a week later I noticed it was still there. It was not painful, just swollen. I reluctantly knew I had to make an appointment with my PCP to check it out. She was somewhat concerned, but did the routine round of antibiotics, with no change in the swollen lymph node. She sent me for an ultrasound of the area that showed nothing more than a swollen node. Next came the needle biopsy which was again inconclusive. CT SCAN also inconclusive.  By this time, I am getting concerned because I knew in the back of my mind this was not good. In July I was referred to a surgeon for a surgical biopsy. The pathology came back as Non-Hodgkins Follicular Lymphoma. Very low grade limited to mostly nodes in my head and neck. FL is a B cell blood cancer that is very slow growing. I could have easily had this for many years and never knew.  This began my journey and routine oncologist appointments. To my surprise, very low grade FL is actually treated with what they call “watch and wait”.  While this seems very unconventional, through research, I found this is the standard of care initially.  Many studies have shown there is no difference in overall survival with early intervention. So, I chose to wait. Over the last 2 years, I was monitored closely by my Oncologist with routine labs and PET Scans.  Slowly, I started to have other lymph nodes in my neck, arm pits and groin get larger and I was becoming more fatigued, but still able to be as active as I have always been. In July 2020, because of increasing swelling in my lymph nodes causing some lymphedema in my legs, we decided to do another biopsy of a node in my neck and also a bone marrow biopsy. The biopsy came back as more advanced grade 3 stage 4. I knew treatment was inevitable at this point.

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