I was diagnosed with CLL in 2008, with no negative markers on the FISH test. I was deemed to have all the good markers on other tests, CD38 negative, ZAP 70 negative, and good mutational state. However, my WBC has continued its relentless upward trend (now at about 70), In 2012 I developed AIHA, or Auto Immune Hemolytic Anemia. When My hemoglobin went below 10 I was treated with a combo of steroid and Rituxin for four weeks (a once a week infusion). It seemed to help a little for about 2 or 3 months and my hemoglobin now seems again on the way down (10.6 currently).
I am wondering if anyone else has been marginally responsive to Rituxin. If so what can take its place when I need the next round of treatment. I would like to avoid having to do a full blown treatment for CLL (Ibrutinib etc). I have, TG, always felt well and would hate to start taking something that will reduce my sense of well being.
I was wondering if genetic testing might identify a possible drug for me?? Thank you everyone. Elaine
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Ezjacobs
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They can run a flow cytometry to see your level of CD20 that rituxan attaches to...
There are newer versions of monoclonals noteably Gazyva (obinutuzumab) it is superior to rituxan when coupled with chlorambucil... might get gazyva as a monotherapy off label, if your doctor can make a strong case to your insurance provider...
Also look into clinical trials as well, second generation small molecules are looking quite good...
As my neutrophils were 0 and platelets were 6 in October 2016 I was started on a course of Rituximab and methypredisolone. So far I have had 4 treatments which is every 4 weeks. Day 1 is Rituximab and Steriods and days 2,3,4&5 is just Steriods both are given by infusion. Am glad to say Consultant is pleased with results, next week is treatment 5. Have not thought yet about how long remission will be. Olive
My 1st treatment on 10/10/16 I was in hospital for 11 days, I had the Rituximab over 2 days because my white blood count was so high, my blood test fluctuated a lot but they told me it was heading in the right direction. Before treatment 2 on 9/11/16, WBC 28.4 Platelets 289 and Neutrophils 0.5. I am pleased with results so far my main problem is Fatigue and some days I find it difficult to cope, living on my own does not help on these days.
Have you had a flow cytometry test? If not, ask for one to be done. As Chris was mentioning above, if you have a CD20 level considered dim, then Rituxan is not that effective a drug on its own.
Chris has given you great advise and hopefully this will help with finding the best treatment for you.
My wife has/had CLL with all of the good markers including mutated immunoglobulin (which may be one of the most important). She was treated with mono therapy Gazyva by Dr.Sharman. No significant side effects and all blood results have been normal since treatment 2 years ago. At least as important---her immune system is as good as mine!! We don't have to avoid crowds or children to prevent exposure. I would recommend considering no other treatment option.
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Official diagnosis
CD38 POSITIVE AND ZAP -70 POSITIVE 
