kscoon
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Posts posted by kscoon
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Hi all, I'm sad to be here but glad to know how much support I can find. My boyfriend John was diagnosed in January with Stage IV Adenocarcinoma. He's EGFR positive with the Exon 19 deletion. Started out with bone pain, to persistent cough, then fatigue and weight loss. A couple visits to the doctor for antibiotics and on 1/7, they told us he most likely had lymphoma or leukemia. Clearly those are the obvious choices for a 28 year old, non-smoking male. A bone biopsy and two weeks later, we find out that it's non-small cell. He has a 2cm mass in his upper left lobe of his lung, extensive osseous metastases throughout his spine, pelvis, upper femur, ribs and shoulders, mediastinal and left hilar lymph node involvement and four small mets (largest is 1.5cm) in his brain. He's being seen by Dr. Nathan Pennell at the Cleveland Clinic. He received Gamma Knife radiation for his brain on 2/4, had palliative radiation to his left hip for 5 treatments and started 40 mg of Gilotrif on 2/5. We live together and we were planning on getting married in the next year but life always finds a way to throw in some hiccups.
New Caregiver-28 year old NSCLC
in INTRODUCE YOURSELF!
Posted
Thanks for the welcome! I saw the summit in May, I'd love to come and get back to DC (I went to college there), but we have a wedding that month, so probably won't make it. John got his first blood tests done after starting Gilotrif and it looks like he's starting to respond and his body isn't reacting poorly to it. Just hoping for improved scans in April!