Hi
I am new to this community but not new to CLL. Was diagnosed in 9/2009 with a WBC of 28.5k after a routine physical and was totally asymptomatic. Just turned 50 also at the time a few months before which was a little ironic. Anyway, other prognosticators like Del 13q, IGVH mutated, low Bm2, and 1 reputable clinic had me Zap 70 negative and another famous facility said positive. Anyway, after 5.5 years and watching the count rise to 208k this past January, swollen lymph nodes in neck, armpit, and groin and slightly enlarged spleen I was encouraged to go on a US NCI clinical trial of FCR vs Ibrutinib/Rituxan trial. 2/3 get the Ibrutinib/R and the other 3rd get FCR. I was really hoping to get into the former arm but ended up on FCR arm. Now I am very healthy mid 50 male and regularly execercise and eat pretty healthy (my sister-in-law is vegan but I am not quite that extreme as I still love fish and chicken in moderation) so the idea of putting these chemicals in me was very scary because of all the potential side effects and unknown side effects. But I knew it was time to see something and I know clonal evolution is always a possibility. Anyway, I ask a lot of questions and gained a lot of my knowledge through CLLtopics.org (although it;s no longer current but still has a lot of great info. I do miss it) and I wanted to know if FCR ever ends earlier than the US standard of 6 cycles of FCR for 6 months if all the numbers both metabolic and blood look good. My first round was amazing. WBC went to 7.5 and other than a creatinine creeping up to 1.6 (it went down to 1.3 after a week but we are watching for TLS) and a 1 day fever of 100.9 I never felt better and the nodes have shrunk down to nothing. When I asked my clinic doctor why it's 6 cycles vs. 2, 4, 6 or 8 (I think France does 8) she stated that there is no standard actually for CLL. It's generally assumed 4 does the trick and if you tolerate FCR well the second two are sort of a just to make sure (Gravy). But the clinical trial protocol states 6. Generally they stop early if a person is having issues or the WBC drops under 5500 along with platelets or the hemo. But in my mind, If everything looks great after 4 cycles, why go through the 2 additional rounds of more chemicals since there is no trial evidence that demonstrates 6 is more responsive than 4 cycles for CLL)? I really have a concern of long term effects with especially FC and given I am healthy (relatively) with no other health issues other than my daily statin. So has anyone stopped earlier when things are good?