My Amyloidosis

Hi, July and August have both shown a slight rise in FLC’s in blood again which is disappointing.  The previous result was about 40 but July and August have both been about 57 which is quite a jump.  I’m hoping it’s a blip and not a trend.  The consultant says we are ok for now but if it trends upwards over the next couple of months then it may trigger my next treatment.  I’ve been told this will probably be Velcade.

Anyway let’s hope we can hold off abit longer.  I’m going to research Velcade to see how this stuff works and the possible side efects.

To be honest I’m feeling great lately, still getting some water retention in my lower legs but still able to play 18 holes of golf.  I’m taking furosemide to compensate for this 1 - 3 a day (although some days none).  It sometimes gives me cramp in my calf muscles so try to take only when really needed.  I’m also still taking ramipril (to protect my kidney as have protenuria) and simvastatin (to help choloestrol) due to blood not being stable.  so not so bad,

speak soon

Phil

Filed under: Latest News on August 30th, 2009