My Amyloidosis

After 5 cycles of the CTD my response has been positive. In a nutshell the free light chains (SFLC) have reduced significantly, my level of albumin has increased and my kidneys are now showing signs of leaking less protein. I have been lucky as some people do not respond but they told me there are other options, although I was still concerned up until the three month stage.

The light chains have moved from 312 (baseline taking in April at the National Amyloid Centre or UCL) to Oct result of 60.3mg/l. The second sample taken in June (before treatment started) was 374. This shows without treatment how it just gets out of control quite quickly and has the potential to trash your organs by forming amyloid fibril deposits on them.

The normal range for lambda SFLC is 8.1 - 33mg/l. Basically there are two types of SFLC, the other is Kappa. With the amyloid forming protein, either one can go balistic and start over producing. Usually these two have a normal ratio of between 0.26 - 1.65. My baseline range was 0.03 Doh! Looking at how my results have been trending down it looks like in September my body finally started to get on top and started getting rid of some of the deposits on my organs - comparing with my results and how I’m feeling slightly less breathless etc. This, I’m told, is a long process and can go on for up to 18 months and then not guaranteed to remove all deposits.

They told me in Oct at the UCL that I had an excellent response of his underlying plasma cell dyscrasia to chemotherapy - chemo’s working would have done.

The albumin (protein level in the blood) has risen from a baseline of 12 (in Hospital) basically in my boots, to a more respectable 30g/l now. I think normals is about 35g/l so getting there.

The protein leaking from my kidneys has also reduced from 9g/l to 5.8. So this backs up the albumin result. These three areas are the main ones I watch closely.

I’m probably losing alot of good minerals as well so will be doing a few tests where possible after completion of chemo to see exactly where I am to enable my detoxification system to get a boost and start my suppression period on a good note. The RBC assay is where I’m trying to start although the medical boys seem to be scratching their heads and saying why or have the serum magnesium assay. My research says don’t get pushed away with this as it’s less sensitive and doesn’t accurately reflect the body levels of magnesium in the blood (less than 1% in the serum). Magnesium is really important in detoxification as it forms pathways for the enzymes to grab the detox molecules and help them leave the body. Getting a bit techi so I’ll stop and those that wish to research further or comment can do so!

Filed under: Latest News on November 6th, 2008