I was about to start a course of Ibrutinib as a treatment naive patient and was told that I must wait until my anaemia was under control.

[Berrytog]

I have been told I must have two pints of blood transfused and a course of steroids, does anyone have any knowledge/experience of AIHA which is the possible cause of this fatigue/anaemia with a haemoglobin count of eight and no other symptoms since diagnosis eight years ago?

[AussieNeil Partner Administrator]

I can appreciate this must be rather confronting and scary for you, but your experience is not uncommon.

Dr Koffman had a splenectomy in an attempt to alleviate ITP from his CLL. He then went on to have a range of treatments for CLL and associated complications including a bone marrow transplant, but his CLL is now stable after he joined the Ibrutinib trial and he is living a full life.

Dr Brian Koffman has documented his experiences in his blog bkoffman.blogspot.com/.

Prof. Terry Hamblin had this to say about AHIA in January and June 2011 respectively:

mutated-unmuated.blogspot.c...

mutated-unmuated.blogspot.c...

Check out the linked open access Haematologica paper Terry Hamblin quotes from in his blogs.

He also wrote a paper on it in 2006:

seminoncol.org/article/S009...

"Autoimmune complications are common in chronic lymphocytic leukemia (CLL), occurring in up to a quarter of all patients during the course of the illness. By far the most common manifestation is autoimmune hemolytic anemia (AIHA), followed by immune thrombocytopenia (ITP)."

:

:

"Treatment of CLL-associated autoimmunity follows conventional protocols, but non-response to primary treatments is not uncommon. Promising results have been obtained with cyclosporine and rituximab."

Given up to a quarter of us with CLL are likely to experience autoimmune complications, with AIHA being 'by far the most common", I'm hoping you'll get some answers from some members that have needed treatment for AIHA. I'd expect we now have more experience with cyclosporine and rituximab and possibly other drugs, including Ibrutinib.

Neil

[Berrytog in reply to AussieNeil]

Thank you Neil for your response, it is most helpful. It was a bit of a shock when I turned up to start Ibrutinib. I had had no symptoms until the fatigue started in May and found that my haemoglobin had dipped below ten. I had noted that Brian had had Ibrutinib and wrote to him about the drug as it had been proposed for me in a trial for treatment naive patients of sixty with adiditional problems.

Roger(Berrytog)

[fish61]

My hemoglobin went from 13 to 8.6 after the first 2 months of Ibrutinib.. I had a transfusion of 2 pints and the # went up to 8.9 another 2 pints two weeks later brought it to 9.8 , then with no transfusions it went up to 10.8.... now it is 10.4 and I am not sure what direction it is going in... but I have started supplements (iron , folic acid, vit C -B6 B-12 ) lets see if that works. My shortness of breath was so severe that I felt as if I was at an elevation of 12,000 feet. Everything ached , chest, arms, jaw. I thought it was a heart attack but it was oxygen deprivation ( elevation sickness ). Not a good feeling and I hope it does not happen again .

[Berrytog in reply to fish61]

Hi Fish61

That sounds about right although with all your transfusions I would have expected your haemoglobin to be a little higher. Mine dropped to 7.6 and then went up to 8.9 after two pints, it fell back a little when the steroids stopped. After four months it was up to 11.9 and on Monday it was15 jumping from 12.5 just before Christmas, anything above 10 is acceptable. Ibrutinib is slow and sure treatment and your levels could take up to twelve months to normalise and then you will remain on a maintenance dose. In my view it is better to have a slow recovery than the hit and miss of FCR with all the side effects and poisons and damage to your body. My energy levels are now turbo charged, a recent cold was shed in five days without antibiotics but my WBC is only dropping slowly and is now 90, 150 three months ago but it went up to 450 from 250 when I started treatment. A CT scan on 23rd December showed no symptoms of CLL in my lymphs and my spleen was back to normal. As far as your aches and pains are concerned I had them all at the start of treatment but now my shoulder pain is all that remains. Breathlessness is something that I did not experience unless I pushed myself when I had chronic fatigue, I found it necessary to stop, rest and then continue, even walking slowly down the garden was impossible without a couple of stops. Of course for me with two very bad hips needed more energy to do very little. Have you checked with your consultant about your supplements? I was advised not to take them! Although folic acid was prescribed with the steroids before treatment started.

I hope this helps, I would say ask your team if they are happy with your progress and if they are then I would be too.

Berrytog