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.
Written by
cwturley
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Thank you for sharing your positive experience. It's a joy to hear about someone getting well, and staying well. All the best to you as you ease into a nice long retirement!
Thanks for the post cwturley. Our treatment experiences seem broadly similar - I am recovering now from my final FCR cycle. I hope we both have long and healthy remissions.
Next Monday I start my 6th cycle of FCR. My story resembles yours in many ways. My genetics are favourable. Response for me was profound and rapid and by cycle 3 CT scan was clear! A very emotional moment, learning that.
I have had minimal side effects, retained hair, taste and my weight increased, appetite has too!
I have had many weeks of severe neutropenia though. I have been very infection cautious. So far been OK.
I prepared for FCR. Used my WnW period as a training ground. Learn myself, train family friends and neighbours, adapt my surroundings. Life changing. Life giving. Even in FCR my fitness has improved, I've not stopped training, albeit with eased intensity.
Thank you for this positive account of your experiences with FCR. As I rapidly approach treatment it has boosted my spirits to hear that it can be tolerable for some people.
Keep well and here's hoping that your remission lasts a long time.
So glad to hear of your very positive response to FCR. I hope that you have a long and happy retirement once you get to that stage.
I was not nearly as fortunate with my FCR treatment. I had to end after round four due to extreemly low blood counts which put me in the hospital for a week. My doctor told me that I had a bad reaction that only happens once in a blue moon. I even had good markers going into FCR and was relatively young (57). Oh well, I guess that we can't all have it so well. At least I am considered to be in remission now with incomplete recovery. My counts are still low so I am getting monthly IVIG infusions. That seems to be holding off sickness, but after four months of this my counts have stopped rising with platelets hovering around 70 and hemoglobin around 8.5. I guess that only time will tell in my case.
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CLL FCR update - 3 years on. 
First Cycle of FCR (IV)
MRD blood tests post FCR
Update: No FCR, we will start Ibrutinib
