Some of you will be at there CLLSA event in Cambridge, UK this coming weekend. Please say hello to me in person. I am excited about coming and partnering with the CLLSA to accelerate education and empowerment and also to begin a discussion with other CLLers across Europe on how we can work together. It's the beginning of a borderless CLL community. You can play a role. Feel free to message me personally if you want to get involved. You interest in CLL and growing knowledge can help others worldwide.
Excited to see some of you in Cambridge - CLL Support
I'm coming to Cambridge and am from Belgium.
Looking forward to meet you .
See you there.
can you be there mid day and evening Friday and be part of the CLL Europe discussion> Maybe you already are?
Hi Andrew Nicole is traveling to join us Friday for the European workshop. Look forward to seeing you both there.
The Friday European workshop capacity is now filled
See you there folks.
My first meeting since Southampton last year so looking forward to hearing news and meeting people old and new.
Hello Andrew and good luck with the borderless-community development! I have accessed much of your information and found it invaluable in understanding CLL and when treatments are needed (diagnosed 18 months ago). I am afraid I won't be in Cambridge so will miss you.
One plea! I have suffered from AIHA (caused by the CLL - indeed I suspect it was AIHA that was picked up at blood donation that then led to CLL diagnosis). Apparently 15% of CLLers suffer from the secondary condition. I found almost NO information (in medical literature or on patient sites) on it when I searched over the second half of last year: I tried very, very hard (as many in this community and a US one know!)
I failed AHIA treatment with steroids and had a splenectomy in January......it seems to have worked in the short term, as I have just been given 6 months til next haematology visit (feels like a life-time compared to what I have been doing)!! My haematologist is a top one and she says the evidence-base on AIHA treatment is poor - it is just an old-fashioned treatment that works from experience....how long it works for is just unknown (anything from 1 year to 10s of years). Why no evidence?....well no drug company will fund a treatment that uses no drugs will they! Why no information - that baffles me if 15% of CLLers really do suffer from such a serious secondary condition.
So in further developing information on CLL, it would be great to include more on known major conditions it triggers.
Andy, Glad you will be meeting with my friend Andrew and others in Cambridge. There actually has been much important literature and research and patient discussion in the lists such as the ACOR group on the common auto-immune problems in CLL. My blog bkoffman.blogspot.com tells of my struggles with ITP that is treated with many of the same therapies. Rituximab and/or cyclosporin are often very effective and durable treatments. Lots of other options. Contact me directly and I can send you some reference material to discuss with your doctor. Stay strong. Brian
I will look at ACOR group again, but as UK and US systems are different, I did not find much to help me when looking 9 months ago (nor on an Australian site). You did send me useful papers and I found a c2003 Italian paper on spenlectomy: it was not that helpful, as only 8 patients (2 died almost immediately, but I think they were very, very ill anyway) and it only followed for 2 years. So I have no idea on say 10+ year effects. Otherwise medical literature is far too quiet!
As I was 53 (last year), my haematologist did not want to use rituximab/cyclosporine (other possible treatments), as I would need to take them regularly and (as I have many, many years to live...) side-effects of the drugs long term would not be good: I will probably need to take them later in life, so also to keep them effective, best to delay now and have spleen out.
So in UK, splenectomy is an option for my situation: however, it is not evidence-based medicine, just the experience of good haematologists .....5 months on and my Hb is 15 and reticulocytes near low end of normal range....long may that go on!
I can understand why no literature on splenectomy: it would require a multi-centre study (as perhaps 3 to 5/year in a major centre), in UK electronic patient records are fairly new (so trawling through for past case records is now easy) and no drugs involved (so not top of a drug company's list for funding...).
Andy, Long may that go on. No literature, but some believe that you can stop the meds after you have lulled the auto-immune problem to sleep. With AIHA, if the counts are good and the DAT is normal, odds are that your RBCs are living a pretty normal life span. I have had no Rituximab for years and am tapering off my cyclosporin. Brian
Hi Andrew I'm coming and will certainly say Hello. It will be great to meet you. Best wishes
My husband had to stop FCR after 2 cycles last fall due to PRCA; cyclosporine worked for him, but he relapsed about 6 weeks after being tapered off and his CLL is now progressing (as per bone marrow biopsy, and decreasing platelets). He's back to weekly transfusions, and we're researching potential next step treatments... since my understanding is that cyclosporine can't be given with FCR, it all seems very confusing right now...