I've seen a few posts recently from folks starting or considering starting FCR. I wanted to give you some thoughts re: my experience in hopes they might help someone.
Background: I am a 66yr old male, diagnosed at 59. Short story of FISH and other tests is that I have the "good" things and don't have the "bad" ones. During 5 yrs of watch-and-wait, I had a second opinion with a CLL researcher at Seattle Cancer Care Alliance to see whether he agreed with my regular onc/hematologist and whether he was aware of any trial I might be a candidate for. He told me I was far too healthy for any current trials and he agreed with my Dr's thought that I was an excellent candidate for FCR because, in spite of my age, I was otherwise healthy.
In Nov, 2016, I was having some symptoms - mainly night sweats - and we determined it was time to treat. I started 6 months of FCR in Dec., 2016 and finished it in May, 2017.
The treatments - 3 straight days of infusions that took most of the morning every 28 days for 6 cycles - were a non-event. After the first cycle my wife didn't even go with me to drive me - I did it myself fin. I had a pretty heavy load in my lymph nodes and the allopurinol worked to avoid TLS. I only had one negative reaction - the very first cycle - to the rituximab with a slightly increased temp which was managed by stopping, then restarting the infusion at a slower rate. My response to the FCR was "robust" in my Dr's word - good enough that we considered stopping after 4 cycles but given evidence of better and longer response with the full 6 cycles and the fact I was tolerating the FCR fine, we went the full route.
Nodes in neck which were significantly swollen were almost normal by the 2nd cycle. First 2 cycles - no problems. For cycles 3 thru 6, each cycle I would have one bad day - the Saturday following the Monday-Wednesday infusions when I would have 1 or 2 bouts of nausea in the morning. FYI, I used the anti-nausea meds immediately following the infusions - I did not wait for nausea to start and, being here in Washington state where it's legal, I did investigate and use some cannabis products. No weight loss (I gained), no significant hair loss although it did thin a bit. I took the week of the infusions off from work but worked the 3 weeks between cycles with no issues other than a little fatigue.
My time since ending treatment in May, 2017, has been uneventful. Blood work returned to normal quickly. At my last checkup a couple of weeks ago my onc/hemo said that if he were seeing me and my blood work for the first time, there was nothing that would indicate to him I have any problems.
Prognosis - I still work but thinking more and more about retirement. So, at my last checkup I asked my onc/hemo to be completely frank with me about my likely future. He said that while there's no guarantee, he would expect that I would get several years before any additional treatment might be necessary and that by then, it would almost certainly be something that may not even be known today and will likely be curative. In other words, don't spend all my retirement $$ thinking it doesn't need to last long.
I know many are not as fortunate as I have been but, this is at least one positive story about FCR.
Fcr update
lung issues following fcr
FCR soon/confused
FCR-12 months on.
Round 2 FCR complete
