Well, did not get the best news yesterday. Was feeling like someone had taken plug out of me, so got bloods taken on tues and somehow got into clinic yesterday. I have now been off steroids for AIHA for 4 weeks: they worked so well when I was on them and 66% of the time they work long term. Hb levels returned to normal and I was feeling great. CLL remains almost dormant, tortoise-like: lots of time to understand CLL!
No surprise, my Hb is around 10 (from 15 only 4 weeks ago). My reticulocytes (baby red cells) are at levels I have not seen (over 7: previous high (pre steroids) was 5 and normal 0.5-2.5), so despite the bone marrow going into massive over-production of red cells, the overall drop is massive very alarming. My spleen has embarked on a blitzkrieg of unexpected proportions against the red cells: a super-charged, crazed hare.
By the way, I notice on my blood sample bag, that the components to be tested include the specific word 'retic' (ie over and above FBC), so the docs do have to ask for reticulocytes specifically. However it is a key measure bone marrow health (ie if it drops off, the CLL is starting to effect bone marrow) and also very important in AIHA - so worth talking to your docs about adding this to your blood measures.
So onto the next AIHA treatment: I fear my path of AIHA makes CLL look common. Docs are firmly recommending jumping the two further treatment options (retuximab and then ciclosporan) and going straight to removing the spleen: I am young and can cope and it leaves the other treatments as back-ups. However, spleen removal only has a 30% to 50% chance of stopping AIHA (a huge range, I guess due to different cohorts) - can anyone lay their hands on any research on this? Also back on steroids as emergency measure.
I did dare ask the question as to 'what if none of the treatments work?'......answer is regular (poss every week) blood transfusions to keep the Hb up, but this does bring other complications (beyond inconvenience): principally too much iron going round the body (body does not get rid of iron, which is in each red cell), which leads to heart problems and more: however, that will be the least of my problems if I follow that path.
I am just hoping this AIHA hare needs a long kip, to allow the 'nice cuddly CLL' tortoise to catch up in 40 years!