GSK Study #2110399 in 2010 (Study Drug: SB-656933)

With all my recent problems this sounded right up my alley. I contacted them immediately. Since once again chest x-ray looks great, lungs are perfectly clear, no sputum production but this intense pleural pain won't leave.

The pain traveled from its isolated location in my right lung last weekend to the whole lung after the acute flair I had. It has maintained a lower level pain in the whole lung with more pain in my 'bad spot'. Yesterday I felt some pains in my left lung and today was a bad day and it consumed the entirety of both lungs making it painful but not debilitating. I stopped off to the ER for a wet read chest x-ray which confirmed there was nothing 'exceptional' a couple nodular changes around my bad spot may prove interesting but most likely stuck mucous from not being able to cough well.



Study drug info

Study Drug, SB-656933, is a selective CXCR2 antagonist in development as a novel, once-daily oral anti-inflammatory agent for the maintenance treatment of Cystic Fibrosis (CF) and Chronic Obstructive Pulmonary Disease (COPD). We want to find out if this experimental drug will help decrease inflammation and slow the progression of lung disease. This study compares how well different doses of the experimental study drug (SB-656933) control inflammation in patients with CF. Two doses of the study drug will be assessed against placebo to see which dose works best.


I sent them the below email tonight. I hope they contact me. I am also considering leaving my center that I have only been at a year. The doctors are both great but the center is set up terribly as far as servicing a patient goes. I woudl have to travel even further so I may consider south of my house in Indiana.






I live in Michigan but would consider travel in order to participate in this study. I am a 30 year old female, diagnosed at 21 years of age, mutations P67L and E60X, borderline sweat test, pancreatic sufficient. Last FEV1 100% and FEV25-75 99% and I culture pseudomonas aeruginosa, achromobacter xylosoxidans, and recently suspected ralstonia paucula.



That being said my problems seem to revolve around inflammation more than infection. I finished a round of IV’s on Christmas day, the first in almost two years and it was after having H1N1. The past two times I have taken zosyn for IV’s I have gotten a horrible inflammatory response afterward. I am currently on a second round of steroids for a more extended period of time, probably 3 weeks since the 10 days I just completed did not work. I started xolair injections almost three years ago and have not had problems since although an IGE level is not possible right now, at least in the US. I also generally get inflammation and/or small amounts of hemoptysis as a flare as opposed to an exacerbation. Two years ago I went to a new physician who did extensive work to confirm my inflammation theories and we have since treated me with steroids when I feel it getting exacerbated and my FEV1 has improved markedly. The above mentioned FEV1 was when I was ill, the one before that was an FEV1 of 108%. Despite my good FEV1’s I had to start steroids today because of intense pleural pain that has lasted a long time.



I have currently eliminated all processed foods, meats, and dairy from my diet in addition to adding flax seed oil, fish oil, and 600mg acetylcysteine orally 3 times per day (my doctor would not write for the 1000mg Dr. Moss used). I have been diagnosed with ABPA years ago with an IGE of 1200 after steroid therapy got it down to the 500 range I tapered, for about 3 years after that it remained in the 3-400 range.



I realize the steroid is an exclusionary marker however I would meet the criteria after being off of it I believe. I am very interested in hearing from you. If I came to Stanford I would want to do a CF consult with Dr. Moss. I realize the travel costs would be my own.