I have been on the cosmic trial for my CLL after 4 treatments I developed AIHA and have been told that the trial did not work for me.

[jimh]

The AIHA is still, not under control, but holding for longer. I wondered, anyone else with similar problems,

would welcome some feedback.

[Quarry]

jimh

I have had AIHA (I have done a few posts on my journey), but my CLL is v early stage (no treatment). Is this relevant to you?

My AIHA was first treated with steroids (works in 2 out of 3 cases) - I failed as soon as I came off them and the AIHA I think got quite aggressive so had to go back on steroids to control HB. Next line of treatment depends on individual.

I am relatively young (54), so I have just had my spleen removed (it was massive, rugby ball size and greatly surprised the surgeons). I go to haematologist tomorrow to discuss my likely future prognosis, but so far (3 days no steroids, so v early days), it looks like no haemolysis.........yet.

So over the last 8 months, I have learned a lot about AIHA (more than I wanted to know anyway!). If you have specific questions, let me know

Andy

[jimh in reply to Quarry]

This is interesting, I was told that the treatment on the Cosmic trial had not caused the AIHA. I am on steroids at the moment dropped from 60mg down to 40mg. I am also taking a drug called Ciclosporin

170mg twice a day. This is a drug used on people who have had transplants. The haemolysis was still evident on Monday when I saw the haematologist. I am holding the blood for longer, waiting for results of bloods today. I am (76) my white cell count was over 300 when I started the treatment. I have had CLL for 8yrs approx. was in remission for 4years after treatment with rituximab fludarabin and cyclophosphamide.My count started to rise quickly after the period of remission. This is why I went on the trial at Newcastle Freeman. Good luck for tomorrow.

[Quarry]

No one knows why/how AIHA is triggered by CLL (and AIHA can be triggered by other things too). Around 10% to 15% of CLLers get AIHA, so I am sure the trial was not the cause. I don't think AIHA evolution has any link to CLL progression/stage (my CLL is early stage), but appears at any time.

Steroids is the first line of treatment - my dose was higher than yours, but that might just be an age thing (I am 24 years younger than you, so maybe I can tolerant an even higher dose (it was 80mg/day)).

Cyclosporin is one of the drugs to treat AIHA in patients where steroids fail - it was not given to me, as if taken very long term, side effects are not great (I am 24 years younger than you!), so I went straight off to splenectomy. So I am not sure why you are having it with steroids (it might of course have a role in CLL treatment - a lot of these drugs appear to have multiple roles....have you had a transplant?)

I had a good day yesterday with haematologist. No evidence of haemolysis and he does not want to see me for 3 months!.....feels like a scarily long time!

Interestingly, I asked yesterday if my CLL had now dropped a stage, as I no longer have any swollen lymph nodes (it was only my spleen)....he thought that it must have.