Hi Clara, Yes, Amyloidosis and Myleoma is pretty rare! I certainly haven't found anyone else with my condition, particularly of my age – it's very rare for someone of 42. Do you mind me asking how old your dad is? I'm guessing not that old if he is still working. I was at the Royal Free in the middle of February and started CTD on 3 March. I'm a few days into my second cycle. My biggest problem is the comedown from the dex during the days I come off it – my whole body aches and I feel pretty down for a few days. On top of that, I've suffered from some pretty heavy duty fluid retention, which has reached my abdomen and hips so that's pretty uncomfortable. However, on a good day, I feel pretty good and not at all unwell. Where in the body is your Dad's amyloid? Mine is in my kidneys, liver and spleen. My kidney and liver functions are currently normal, but I do have nephrotic syndrome and as a result I am on salt and fluid restrictions, which are pretty tough. I have no idea what my prognosis is – I was told by the Royal Free that the 3 month stage is crucial in making any kind of predictions. In terms of the myeloma, my haematologist believes I've had it for just a 'few months'. On the basis that I started having symptoms about a year ago with intermittent ankle swelling as a result of the kidney issue, I can only assume that the original underlying condition was MGUS or SMM and it recently progressed. My bone marrow biopsy shows a range of 20-30% plasma cells. I apparently have IGA type myeloma with pre treatment paraprotein levels of 6 and lambda free light chains of 152. Not massively high numbers, but obviously enough to kick start the Amyloidosis. A stem cell transplant was only briefly mentioned at the Royal Free and I was told I was 'a long way off a SCT'. I didn't question this at the time as there was so much to take in, but I don't know if this a good thing or bad thing. I too am on the Alchemy study and will go back in a couple of months. The plan for me is that they are looking for a 90% reduction in free light chains after 3 cycles. If this isn't achieved, then I will be moving onto velcade. At my end of cycle check up last week, my IGA levels have already fallen from 6.8 to 3.5, which was seen as very positive, but I am waiting to see if this has had an effect on the free light chain reading – I sent my blood sample off to the Royal Free last Monday, but haven't yet had any results back – has your dad had any results back yet?
Wishing you and you dad well and sending lots of positive thoughts your way! 🙂
Tracey x
