I just got back from seeing Dr. Furst at UCLA and was offered to be on a new drug trial for scleroderma fibrosis (specifically lung fibrosis, alveolitis) called Gleevec (Imatinib)
First I have to have a right heart cath to be sure that I DON'T have pulmonary hypertension and then I will be eligible for the study.
Dr. Furst said that he is pretty excited about the potential for this to help us. The drug is presently FDA approved for a certain type of leukemia and a rare stomach cancer but has never been approved for scleroderma and no research trials have been done yet but for some reason the MD's are very optimistic about the science involved having to do with a certain protein (tyrosine) etc. etc.
The trial is for a year and the medication will be taken orally started at a low dosage and then slowly upped. I will have blood tests every 2 weeks and a clinic visit, PFT, etc. every three months. The drug and blood tests will be covered by the drug manufacturer and I will be monitored very closely.
My primary care physician told me that he has had other patients on Gleevec for the above mentioned cancers and they have all done very well on it with limited side effects.
So....I think I am going to go for it as my other option is cyclophosphamide (booo) or other drugs that have only been marginally successful.....(?)
Just thought I'd share ......happy to hear any feedback.
Another New Trial ----ucla
Posted 16 November 2007 - 03:44 PM
Posted 17 November 2007 - 03:07 PM
Up until a few days ago, I generally had a great deal of faith in experimental testing and drugs for various illnesses. I always felt, naively, that worst case scenario, it would work.
The latest news reports with regard to Merck and their AIDs protection drug has caused me to stop and re think the pros and cons. I'd have thought that this drug would have been pre tested for a quantity of time on mice, etc. and may very well have been. Yet, it turns out the drug which was to prevent AIDs, has now made it's user's more susceptible to AIDs.
Please explore all pre testing and information and question, question and question before getting into an experimental situation.
It is what it is...........