My Amyloidosis

I’ve just received the December SFLC results following my last course of chemo (CTD). This was the 6th month of chemo so I was hoping it would be the last for now. I sent two samples of blood - one to London and one is analysed locally. Although the results are slightly different (which has been true throughout) they both are very positive:

London = 19 (November was 51)

Local = 38 (November was 56)

My consultants have stated that “This is a very encouraging result indicating an excellent response to treatment” and “agree that further chemotherapy is probably unlikely to be beneficial.”

So…………. what now?

Well, I will have to continue to take certain tablets to counter the symptoms that persist:

Water retention, protein leakage, and breathlessness, however these appear to be reducing slowly.

The amyloid deposits, already affecting my kidneys and heart, could take 6 - 18 months for my body to remove (not always possible for a complete removal) but now the SFLC have been suppressed my body can have a go at this job.

The symptoms I mentioned appear to be connected to an extent as when my water retention goes down - my breathlessness is reduced also. I lost 4-5 kg in weight last week which was pure water. I reduced the tablets accordingly thinking I was done but then the water has returned a bit so have had to increase tablets (furosemide - duiretics).

Clearly my blood is still not quite working normally as a result of the low protein content (caused through leakage from poor filtration by my kidneys (affected by amyloid load in this area) ) leading to low albumin levels. However these factors (albumin level, protein leakage and SFLC) were improving and so slowly, I expect my blood to become more stable.

Just hoping that January results manage to report a suppressed score on the SFLC front with no Chemo helping.

Only thing I can do now is detox a little, eat well (as nutrition has got to be a part of making your body tick properly) and see what happens.

Best wishes for Christmas and New Year hope to see you soon,

Cheers.

Filed under: Latest News on December 16th, 2008