Aged 70 yrs, male, diagnosed with CLL in Feb 2013,while I had a routine
blood work when I had infected chronic tonsilittis.. WBC was 31,700 and rest all OK.
As advised by my oncologist, I had undergone several tests including Flow cytometry. No lymph node enlargement, no fever. Negative for Zap 70 and CD 38 markers. I was told Zero stage. Non diabetic and had received vaccinations for Pneumonia, HIB and meningococal. I was under watch and wait , no treatment was started yet. No doubling of WBC in less than 6 months.
Undergone multiple investigations since 2013frequently and my stage is being monitored closely.
Now in 2016 August, lymph nodes enlarged in stomach, neck enlarged besides spleen also enlarged from 111 mm to 140 mm with multiple lymph nodes in both sides of neck largest being 24x12 mm on right and 21x8 mm on left side , afew peri pancreatic nodes largest being 40x16 mm.
Again Flow cytometry done : NEGATIVE for Zap 70 and CD 38 .
Fish test all NEGATIVE for del 17p, del 11q, del 6q 21, C- MYC 8;14)
Ig Vh mutation positive with 4.7 % mutation frequency
LDH : 249 ( ref range up to 330)
B2 micro globulin : 1905( ref 0-2000)
Blood work ( sep 2016) : wbc : 1,29,300, Hb 12.1, Rbc 4.61. Platelets: 1,50,000
Currently no fever, not much weight loss( lost 4.5 kg in 3 years, present weight 57.5 Kg), No night sweat, no discomfort, No fatigue, no feeling of tired, appetite OK
Considering the enlargement of lymph nodes in neck and stomach and enlargement of spleen, progressing WBC of more than 1,30 lakhs which is alarmingly high and platelets being just at the minimum level , I was advised now by my oncologist to start treatment by taking Bendamustin with Rituxanib of 6 cycles at the earliest so that I can tolerate the toxicity now and may get good results..
My worry is "Am I ready for treatment and whether this B &R chemo pose any problems for me during treatment as some advise to wait as the condition and stage is not bad warranting treatment immediately ? If my condition become worse and my worry is whether can I tolerate the chemo therapy drugs posing threat with many adverse side effects,? "
Considering I am negative for del P and negative for Zap 70 and CD 38 markers and Ig Vh mutated, what is the ideal treatment suitable for me?
I am scared now after going thro various experience of some CLL patients
in this forum and after going thro the experiences reportedhere.
Will the experts help and guide me what I should do and what treatment
Am I fit for clinical trials in any hospital of repute ? Are they safe for me.
Can I safely take B R chemo?
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