I posted this in reply to another thread and wanted to share...

I had a middle right lobectomy and upper right wedge resection back in May of 2011. It was before diagnosis and to rule out cancer. The tissue samples did show Weg’s. I also had another mass start showing up and increasing quickly. At the end of October 2013, I had to have another open lung surgery on the right lung and they found the mass to be a Desmoid tumor and not Weg's or cancer. This was a brutal surgery as they had to remove an area of 3 ribs that was about 4x4cm. They sewed a mesh patch to these 3 ribs to keep the good stuff in I guess. In addition to Weg’s and now also have Aggressive Fibromatosis.

The lobectomy was rough and I was in the hospital for 7 days and a complication of a collapsed lung. I’m a very active 41 year old and it wasn’t easy. I was told before my surgery that my Weg’s is in remission and down to 2mg prednisone daily and Bactrim every other day.

Bad News Alert- I have been in severe pain for the last two weeks and a new dense area and fluid is showing up in my right pleural space. I had a needle biopsy last week and it’s not a Desmoid tumor but Vasculitis…WEG’S.

I see my pulmonologist and Rheumatologist Thursday and hoping to get some answers and dread the Cytoxan talk. If two years straight on CTX didn’t keep me in remission but for a few months, what’s next.

Whomp...whomp...whomp!