My Amyloidosis

Jan 7th 2009 - my first month with no chemo (CTD) so I’m really hopeful that the Serum Free Light Chains (SFLC) will remain normal and the plasma cells stay suppressed. The blood they took on the day will take at least 2 weeks to analyse for SFLC as it gets sent off to Birmingham. The other blood markers seemed pretty normal so looking promising. I’m still leaking protein through my urine but it is slowly reducing (waiting for this month’s result). This is due to amyloid deposits already affecting my kidney filtration system although I have a normal kidney function. My body is trying to get rid of these now the SFLC’s in my blood have been reduced but no guarantees. My breathlessness has reduced significantly and I’m able to walk more briskly now when walking the dog and playing golf! Only 9 holes on a par 3 course as yet but planning bigger things now some fitness is returning!

I’m back at work in the office now my immunity system is back up to scratch but I’m still getting some water retention especially in my legs. I suppose this is due to the slightly low albumin levels in my blood (26) which is still below normal (35 ish), so blood still not quite balanced. The doc also said they may take me off warfarin (blood thinning tabs) next week as my albumin is back up and holding now for three months. This will just leave the Ramipril (protein loss), simvastatin (cholestrol) and fursemide (water retention) for now!

So, all in all, good results so far but until I get the light chain result back I’m not counting my chickens. I also sent a sample to London to the national centre, as normal, for them to check.

let you know when these arrive back

cheers until next time.

Filed under: Latest News on January 12th, 2009