hi there. i would like pls to know if unmutated cll patients as i am have complete remision for several years after FCR treatment or they all relaps after 2 to 3 years .fish test necative to 17p deletion.
Image of overall survival comparison with FC and FCR for IGHV mutated and unmutated added by Admin
Hi Neoklis
I currently have no mutations and my hematologist told me remission lasts in average 3 years. This is all I know.
I think with the new data out, unmutated patients will benefit with much better results from novel agents like Ibrutinib. Every specialist I’ve heard speak would not recommend FCR for an unmutated patient. It also depends on what country you are in. FCR maybe the only choice in some countries. vjhemonc.com/video/a6ctpm1i...
I've taken the liberty of including the relevant Kaplan-Meier curve from Long-term remissions after FCR chemoimmunotherapy in previously untreated patients with CLL: updated results of the CLL8 trial by Fischer et al from BLOOD, 14 JANUARY 2016 x VOLUME 127, NUMBER 2
This curve plots updated data on the probability of progression free survival for previously untreated FC and FCR patients with both mutated and unmutated IGHV CLL genes from patients enrolled in the CLL8 trial. This international, prospective, randomized, open-label, phase 3 study was conducted at 190 centers across 11 countries, so you won't get any better guidance than this.
As you can see from the relevant curve, about 60% of patients in your situation had progression free survival (remissions) lasting 3 years with 20% lasting 7 years before needing their next treatment. This contrasts strongly with the mutated IGHV patients, where the 50% reaching 6.5 years remission saw no further remissions out to 8 years.
Neil
thanks for all informations
It's great that you have been in remission for several years. Don't worry about statistics. They are about what has already happened and show averages. We are each different, and so is our response to treatments.
really i am still watch and wait but it cost me a lot of stress such i am 42 and i don't know what will happen in my next apointment with my doctor.i really wonder if allogenic transplant take my out of all this mess.?? or to wait until something new like car t will be avaliable for all of as.
Neoklis - You might want to restrict this post to community only, or start a new one before answering my questions here, if you chose to do so (click on the v in the original post here, then edit, then go to the bottom and change the setting from everyone to community only). What country are you in and do you know what treatment options are available to someone with your markers in the health care system there?
Watch and wait is stressful regardless of age, but it presents different challenges, when making treatment decisions, for younger, patients and their doctors than it does for an older patient population. Has your doctor started to talk about treatment? Is your ALC (absolute lymphocyte count, not percent) going up rapidly? Are your HGB (hemoglobin), platelets, or neutrophils trending down? Are your lymph nodes or spleen enlarged? Are there symptoms like night sweats or fatigue that are impacting your life?
These are all things to discuss with your doctor if considering treatment. There are advantages and disadvantages to every treatment choice. Has your doctor brought up going for a transplant? For younger, more fit patients some doctors feel that it is a good option, but it certainly is not without risks, both during the process and in terms of extended, sometimes lifelong, complications.
But there are risks with FCR, also. If I were in your position, I would use the time before your next appointment, if you expect a treatment discussion, to look at the pros and cons of what would be available to you. With a little more information about your particular CLL (we are all very different) people here will be in a better position to help you find resources to help in your decision.
Hopefully your counts and symptoms will give you some time, before considering committing to treatment of any kind, for some of the newer approaches in trials or recently approved to be better understood and reasonably accessible to a broader patient base.
thanks a lot
Hi,
I am unmutated and did 5 rounds of FCR in 2013 after which I achieved MRD neg :)) so classed as complete remission.
My consultant estimated that - fingers crossed - being unmutated I would have a remission that would last 4 maybe even 5 years.
5 years on and I am still classed as in remission. I am noticing some changes - some nodes are growing, my WBC is still only 6.9 but my platelets are dropping - now 83. Spleen is palpable - just, odd night sweats etc.
I'm hoping my platelets will improve or I will have to have a BMB to see if anything is changing.
FCR has had a negative effect on my immune system and my IGG is still going down - it's about 3.1 - but fingers crossed I don't seem to have infections, I'm still on anti-virals and Septrin to keep my system as infection free as possible.
I know that FCR has had negative effects, my immune system, but I have felt very well since 2013 and enjoy life to the full.
Hopefully, when the time comes, I will have another good outcome and remission from whatever drug I need.
Take care,
Louise 
I hope you are one of the lucky 10%ish unmutated that gets a very long remission out of FCR. I believe 40-50% will get 4 to 5 years. Most doctors will not go the chemo route with us, but the newer treatments are very expensive. I do not know the healthcare situation in your country, but many CLLers are placed on a treatment path based on money rather than best outcomes.
you are right my frient.
I'm unmutated and have been on watch and wait for 5 years. My CLL specialist (USA) did not recommend the chemo route. If I wanted to go with chemo she recommended BR over FCR. I decided to go with a novel agent. She was able to get my insurance company to permit/approve Acalabrutinib. I started last week and the only side affect has been an occasional slight headache. I go in tomorrow for labs to check on how it is working. Since I'm on commercial insurance the manufacturer has a program that covers what the insurance company doesn't pay (up to $26000 per year). It appears that I won't have to pay anything out of pocket for the drug. The assistance program doesn't apply if you are on Medicare. Ibrutinib has a similar program with a $10 per month copay (if you are on commercial insurance).
Uihwki…. I am still W&W however will need tx within a year I suspect. My CLL specialist also said he would recommend Acalabrutinib as I am 11Q & unmutated. He was confident it would be approved off label by my insurance which is Regence. I am curious if there was an income limit for getting assistance from the manufacturer on the co-pay ?
Week 4 and all is well. WBC spiked as cells moved out of lymph system. Others labs continue to improve. As I said the only side affect has been headaches which Execedrin Tension Heachache keeps under control ( it doesn't contain aspirin). No income restrictions on the assistance program. They provide a debit card to the pharmacy worth $26k. What the insurance doesn't pay comes off the debit card (which counts toward my max out of pocket). My max out of pocket is $9k so I've not had to pay anything. Let me know if I can answer any other questions.
My husband with p53 & 17 deletions wasn’t even able to complete 4 treatments with FCR. He also began having severe upper respiratory infections in the beginning. He was on Levaquin for 3 months.
His FCR was stopped... 6 weeks later he began Ibrutinib!!!!!!
It’s has been a miracle drug for him.
Ibrutinib plus IVIG every 28 days has literally saved his life.
We are truly blessed.
Farrpottery
hello Farrpottery,
I thought that if one is 17p del., they wouldn't even think of giving us FCR. Instead we would go directly on drugs like Ibrutinib. Am I wrong?
I am surprised but as you say, each case is different Hilda
nice to hear this.i wish him to stay with ibrutinib for a long time without any problems
I am unmutated and cd 38neg and Trisomy 12, after FCR 6 cycles 10/13 - 4/14 I was MRD neg and CR. 4th-6th cycle only 75/50% as MRD neg was already after 3rd.
Since than, I am doing fine and all is in best shape. CLL in blood is 0,1-0.6% and of late, the Unihospital tested, "under detectable result". Blood all in best shape, t-cells and b-cells normal. Only IgG went down to 580, sometime 650 or so. Little under normal. No other symtomes.
Hope it will continue.
Hello Neoklis, I agree with the comments below and my understanding is that ibrutinib would be part of the current the standard of care and works very well for Unmutated patients.
Unmutated CLL and MRD-
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study
