I'm concerned about whether my husband made the right decision when he was given the FCR arm of the Flair trial as over a number of weeks been mentioned that it is not the best frontline treatment to have. We were both CLL nieve even though he had it for 19yrs and had no problems. Did we make a hasty decision and should have looked at alternatives. He has been in remission for 3yr apart from the odd infection which takes longer to treat he is very well. My concern is that there is a lot of posts about how toxic FCR is and the damage it can do. We live in the UK so I'm not sure what options we had. He sees his consultant in July so do we need to ask any questions about the damage FCR can do or has done. I'm just worried.
Jenny UK
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I believe FCR is still the only first line treatment in the UK. There are some exceptions. If you are having doubts talk to your consultant about them.
I would ask for an early appointment July is a long time to wait when you are worried.
If FCR is the only treatment option for him he will still be better off on a trial where patients are well cared for.
I'm going to be bold and say your husband did the right thing when he went into the FLAIR trial. You didn't chose FCR, it was chosen at random, for you. If he had been unsuitable for FCR for some reason then you would not have been able to take part in the trial and he would have been allocated a less toxic but probably less effective treatment or Ibrutinib if he had a 17p or TP53 positive CLL.
The whole point of the trial is to prove which is the most effective treatment. However, it's more complex than that because different genetic markers and mutational status will do differently well on different treatments. It's not clear yet which is better for which CLL (with a few exceptions) although many doctors in USA would advocate Ibrutinib for first line treatment because it is generally thought to be less toxic although it hasn't really been in use long enough to say that with 100% confidence long term.
If he hadn't entered FLAIR he would have received FCR anyway so he is no worse off and has had the benefit of additional monitoring and testing as part of the trial.
Some people get 10+, 15+ years of remission with FCR but if he relapses then there are several very effective targeted treatments available in the UK.
It sounds as though your husband is doing well and a long watch and wait period probably means he will have a long remission . You have nothing to worry about but please talk to your husband's doctor, ask for his FISH and mutation status and let him/her reassure you too.
1) Don’t fret about things that happened in the past as you can’t change the past. Look to the future as it is the only thing you can potentially control;
2) If your husband had a 19- year watch and wait period it is reasonably likely that his disease is mutated. Many, many doctors regardless of country still recommend FCR in these cases. This may change in the future as treatment alternatives evolve but this arguably isn’t the case today and it certainly wasn’t the case 3-years ago when he entered the trial;
3) Focus on today and enjoy the present. It sounds like your husband is doing well so you can’t ask for much more. Anyone of us could step off the curb this morning and be hit by the proverbial bus. I plan to make sure I am smiling when I am hit. You should too!
It sounds like it worked well for your husband. The new therapies I believe are more effective across all types of CLL. It’s more important now for CLL patients to have the information to make an informed choice. I wouldn’t worry, just enjoy the remission.
I had FCR this summer. 3 cycles and reached remission. I feel great. Some people tend to get more infections than others. I am fortunate that I hardly got sick 12 years on W&W and 9 months into remission, all is great.
I don't think of FCR as toxic and either does my team of doctors. Those terms for me get thrown around too easily.
Some of my friends on Ibrutinib, have lots of side effects and are miserable. Some do well. I am sure those suffering on Ibrutinib would call their choice toxic.
I have non CLL friends who seem to catch every germ out there. It's so individualized.
Hopefully in time you will be comfortable in your decisions.
Jenny if they knew for sure what was the best choice to start treatment, they would not need the Flair trial. Even the experts can not all agree.
All Cll drugs we take have potential toxicities. The good thing about FCR is we have more data and know the risks better. Ten tears from now we might learn about toxicities associated with ibrutinib and venetoclax no one knows about, in addition to the ones we know.
And the answer might not be a one size fits all answer. Even though one treatment arm might be declared the winner in the Flair trial, there will be those who did better in other arms. And there will very likely be those in the FCR arm who get 20 year remissions and have minimal issues with toxicity.
One of my doctors, who I like a lot, wanted me to go on FCR because he saw it as a known vs the unknown thing and thought the data on FCR were more mature and the risk vs reward well worth it. I didn’t end up making the choice for me, I developed hemolytic anemia which made one of the drugs in FCR not a choice for me.
There is also the issue of sequencing. They know ibrutinib can be very effective second line to FCR. Will those who fail ibrutinib have FCR as an effective second line choice? Who knows? I wouldn’t second guess your choice at all.
Jenny. If it’s any comfort I’m also a Brit and at least theoretically I may have been able to get ibrutinib through my private health insurance.
But I was sufficiently uncertain of which is the best first line option for the really long term to also volunteer for FLAIR. And I also got FCR. And I don’t regret it since at the moment anyway it looks like it has worked well for me.
I really think as a forum we need to pull our necks in on making overly absolute comments about CLL medicines. The truth is that ALL currently available medicines have a great chance of causing a response. It’s not right of us to induce unnecessary anxiety in others like this.
Even if ibrutinib may be better for many types of CLL especially in the short to mid term, that doesn’t mean FCR doesn’t work. And we simply don’t know if over 20+ years some people may even do better by taking FCR first, banking some CLL free years and then taking a more selective drug second.
The fact that he has been in remission for three years already suggests that the treatment has worked well for him. So that’s something to be pleased about. No need to be concerned unless there are symptoms or signs that you want to talk to the doctors about.
If at some point your husband relapses, then he would be eligible under the NHS for either ibrutinib or venetoclax (the latter given with rituximab). Most of the concerns about FCR are about repeated use as would have happened previously. And so few doctors now recommend a repeat of FCR if more treatment is needed.
For sure I have no intention of doing FCR a second time.
It’s perfectly possible that FCR could buy him so much time (especially as he was a 19 year watch and wait) that he’d never need another treatment.
And as others have said without certain markers there would have been no other treatment available on the NHS anyway. And of course by now even if it had been available he’d have been taking ibrutinib daily for three years and there are drawbacks also to that.
I hope he is doing well and will continue to do so for many years to come. And if he isn’t doing well talk to his doctors about that.
Very well stated, I am very happy I choose B+R even though I had a choice of B+R or Ibrutinib in USA. There are a lot of things to consider before starting treatment. There is only one way to find out "just do it".
Thank you, for all your replies I do try to keep positive but when you have problems in the family your boat is easily rocked. As you have said being on a trial is a good thing as you are well monitored.
Like AdrianUK, I had FCR. I really struggled with the toxicity issues. The statistics are quite alarming. Some experiences frightening.
I saw Prof Hillmen in Leeds, a 2 day trip from the SW, that for me was very reassuring. He is a world leading expert.
My experience with FCR was very straightforward. All my lymph nodes, large spleen and bloods became normal in 14 days! And I felt well. Apart from nausea after chemo for a few days. Now 6 months after i feel 100%. I did 6 cycles.
My research told me around 25% will feel this well on FCR. 20% will fail to complete the course due to side effects. In the UK, you then get access to the newer drugs.
Its important to focus on what is likely to happen. The positives.
It is my belief that in todays medical environment, clinical trial care is most often above the standard care one would receive otherwise. Hopefully this is the case for you.
Thank You and your husband for participating in Flair. The benefit to future CLL patients is a gracious gift.
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