My Amyloidosis

Hi, just back from the Royal Free Hampstead Heath or National Amyloidosis Centre to people like me.  Every six months I pop down for a check on my overall condition and a chance to chat with a specialist  and on this occasion a bit of sight seeing with my wife around the Thames - south bank.  I was really looking forward to going down this time as I was feeling a lot better than last time (October 08) as I was on chemo (CTD) at the time.  I slight cold put a bit of a damper on my energy levels as I found out when trying to march up the 7 floors of the Tate Modern at the end of my first day.

Overall the Heart scans (ECG and Echocardiogram) showed that there was improvement in my heart function which was great news.  However the proteinuria (24 hr sample) was still the same which shocked me a bit as the smaller monthly samples had been showing a reduction (1.1mg/l).  My albumin was 28 on the day which is steady.

The body scan looking for total body load of amyloid deposits showed no change - again disappointment.  The specialist explained that I had only been off the CTD for four months so not unusual although some people do remove the deposits quicker than others.  This depends on the quality of light chain that is stuck on the organ and I may well have sticky deposits that might take a bit longer.  They explained that it could take months and even a couple of years to reduce the deposits that are affecting my kidneys.  This is why the potein leakage in my urine and hence albumin level (protein in blood) are not normal.  

The specialist explained that while I was well they may consider harvesting some of my stem cells http://www.ucl.ac.uk/medicine/amyloidosis/nac/nac9.html just in case they need to give me stronger treatment later on and then they can always re-start my bone marrow with my good stem cells.  This would also allow me to have a stem cell transplantation if thought beneficial in the future.  The immediate concern is to remove the protein leakage (proteinuria) as over the long term this can affect the kidneys.  My kidneys have a normal function to this point so may need to screw down the free light chains a bit further as now back up to 49.  I also have paraproteins http://en.wikipedia.org/wiki/Paraprotein (floating around) which have been reduced significantly.  A paraprotein is formed when a heavy chain (made of two light chains) has one of the light chains broken off.  So some people have FLC’s floating around, some have paraproteins and some have both - I have both!  My last results showed the paraproteins were too insignificant to measure so I’m hoping this is good news!  I’m waiting for the specialist’s letter.

 

speak again soon

choo

Filed under: Latest News on May 11th, 2009