New Member: Wegener's GPA Diagnosis 2016 & Lung CA 2014

[Lindy17]

In May 2013, I had a severe asthma attack followed by chest pains. The next day I went to the ER, heart was okay but the chest scan showed a small nodule in lower lobe of left lung. Had several cat scans over the next 9-12 months to monitor the nodule. After a year, the nodule began to grow & change in shape. In May 2014, I had a needle biopsy & was diagnosed with lung cancer. I had a neuroendocrine atypical carcinoid tumor which does not respond well to chemo or radiation therapy. More tests, scans and lymph node biopsies were done. Thankfully, no other tumors were found. In July 2014 I had surgery to remove the lower lobe of my left lung. Follow up scans were done every 3-4 months to monitor my lungs. Almost 1 year to the day, in July of 2015, a chest scan showed new nodules in the upper and lower lobes of my right lung. During the needle biopsy, my right lung started to bleed excessively & they had to terminate the biopsy. A bronchoscopy was also done and no cancer was found. On April 6, 2016 I had an open-chest biopsy. On April 12^th my pulmonologist called to tell me it wasn’t cancer but he said the news was not good. I was diagnosed with Wegener’s GPA. There was a lot of tissue damage in the areas surrounding the nodules so I was admitted to the hospital the morning after my diagnosis for three days of high doses (500 mg) of IV prednisone. I had my 1^st Rituximab infusion (1000 MG) on April 19^th & also started daily 60 MG of prednisone. I had 2^nd rituximab infusion on May 4^th & started to feel better within days. A lot of my symptoms (chronic sinusitis, a lot of nosebleeds, chronic cough-sometimes with blood, severe pain in back when coughing/sneezing, blurred vision, wheezing and shortness of breath) were improving. I was doing really well until August when almost all of the symptoms returned & some were worse than when I was diagnosed in April.

I have diabetes & was managing it with several pills & a bedtime injection of insulin. The prednisone has wreaked havoc with my glucose levels. When I was in the hospital for the IV prednisone my glucose levels were 300-700. They had to check it every hour & give me injections of insulin almost hourly. Now, I have to check my levels 4-6 times a day, do insulin shots before every meal & at bedtime. I also have swelling of face, legs, ankles & feet which is due to the prednisone. I have been taking the antibiotic Atovaquone (Mepron) since April & I am currently on 14 daily meds: 10 prescriptions & 4 OTC.

The last 3 years have certainly been challenging but I am extremely thankful & blessed that I am still here to talk about it. It sure beats the alternative!!