I went to UCLA last friday and had my right heart cath done. This was done with no sedation just lidocaine to my neck. The catheter was placed in my jugular vein and I could watch on the x-ray screen where the catheter was going. The MD was great and made me feel confidant in his ability....said he had done 500-600 of these. For him it was like putting in an IV. I was quite anxious....DUH....and felt my heart flutter when the catheter went in. But it was over pretty fast and I just had to stay calm and not move my head.
The numbers indicated that I was borderline for a diagnosis of resting pulmonary hypotension but was still able to qualify for the trial.....so I went into the next room for a bronchoalveolar lavage (BAL). I was given the usual "conscious sedation" drugsl but this was NOT pleasant as I became conscious of my surroundings and what was happening.....thought I couldn't breathe with the tube in my lungs and the fluid! I got pretty scared and tried to pull the tube out......I think they gave me some more meds because I dont remember much after that.
I signed the consent papers for the trial and I will be one of 10 participating at UCLA. I will be given the starting dose of Gleevec on Friday when I return to UCLA for a physical and a 6 min walk test.
Gleevec is a drug currently in use for certain types of leukemia and a rare stomach cancer. It works in a specific way and with a certain protein that causes fibrosis in the lungs (although skin should be helped as well). They have high hopes for this drug in scleroderma and it has less side effects and adverse effects than a drug like cyclophosphamide.
The trial is for a year and I will be closely monitored with clinical visits and blood tests. I believe that Dr. Furst and the clinical trial coordinator have my best interests in mind and if there is any indication of worsening I will be advised . I know clinical trials can be risky but I feel that currently there is no really good drug available anyway so why not try to help myself and others by going into some unknown territory.........
I will keep everyone advised of my progress....wish me luck....could be good for all of us!
Posted 17 December 2007 - 06:55 PM
Posted 18 December 2007 - 05:30 AM
Congratulations! From all the studies going on with Gleevec it looks like it might be another effective treatment for scleroderma. (Webmaster Update: Gleevec was later found to not be effective for scleroderma.)
Thanks for being a test subject. I'm sorry that the tests you had to go through weren't very pleasant. I've always read about how they do the BAL, but have never had to experience it. Sorry you had problems with it, but glad they took care it once they realized your discomfort.
Apparently the UCLA trials just got added or just started recruiting. There are two other trials going on. For those that are interested, here is a link to the current trials that are recruiting for Scleroderma.
Look forward to hearing how you do during throughout the year.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)