Finished 6 cycles of Treanda/Rituxan...only PR

My last treatment with Treanda (bendamustine) and Rituxan (rituximab) was late March, at that time, prior to the infusion, my CBC showed total WBC 22K. Hb 7.8 and platelets 22K. A month later the CBC = 8K total WBC, 8.7 Hb (after weekly Procrit and one transfusion) and 36K platelets, the only normal value being the white cell count. Since then the total WBC peaked at 30 and then down to 16K last week but both Hgb and platelets sliding slowly downward to 6.4 and 16K respectively, leading to another RBC and platelet transfusion last week... Bottom line: My markedly enlarged lymph nodes have decreased significantly in size but my marrow is not yet cleared AND/OR still recovering from bendamustine suppression.... 

 So my oncologist has suggested I look into consultation with Dr Porter at U Penn who a few months ago published a study in which genetically engineered T cells led to good results in 3 patients with CLL (see article or for any layfolk reading this), so I have an appointment in early July (maybe sooner if my medical record and request for stat consult for a fellow MD are heeded) 

 My doc has talked also about using another monoclonal antibody Campath (alemtuzumab) which is good for ongoing bone marrow disease but hard on one's immune system, particularly T cells. One has to get weekly checks of CMV reactivation with the aim to treat if this bad virus comes back with a very expensive drug, worth it if one wants to avoid retinitis!

 New drugs in the pipeline that have gotten a lot of press are oral tyrosine kinase inhibitors, now in phase III trials (see this) but these trials may not work for me, because I have had Rituxan 3 times already:

• for GS-1101, the active arm is Gs-1101 and Rituxan vs placebo and Rituxan
• for  ibrutunib (PCI32765) it would be the drug vs  ofatumumab (a CD 20 Monoclonal not necessarily any better than Rituxan

there is an earlier phase trial for a drug similar to ibrutinib (AVL-292) that has a small phase I trial that I could go to NYC for but would need to have a platelet count over 30K

I tried to get into Revlimid phase II trials but in the spring of 2011 my disease was not advanced sufficiently and in the fall I failed to qualify because my platelet count was under their criteria. Phase III trials are drug vs placebo + BR which I have just completed with only partial remission so not for me..

So I am running out of options, and need to think about stem cell transplant also. My brother who matches me well has stopped communicating with me and may not be  interested in saving my life, but I will keep trying....