CLL Support Association
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Any suggestions

I have just returned from hosp with the news that treatment should begin. I have two choices the conventional fcr treatment or the Flair trial which may still mean fcr if that’s what the computer recommends has anyone any thoughts or advice,

Thank you

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If you are starting treatment for the first time and have no experience of treatments then my view is either way would be ok!

FCR is still the gold standard for patients who’s genomic results mean they are suitable and have the qualifying criteria such as age etc.

The recent Cll support group in Birmingham had a very good explanation re current treatments and research and videos can be found on the Cll Support Association website for background info.

Just check out the possible side effects for trial treatments before you decide.

Remember all drugs have side effects.

This is a very successful trial and you will have been given full details about the different arms.

There are patients on here who have been or are still on the trial if you search FLAIR trial I am sure some will pop up.

Best of luck with your decision and your treatment whatever you decide.

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You’ll receive terrific oversight on a Flair trial dandelup and can register and explore it to get all the information. You’d still have the ability to opt out and receive FCR if you wish.

Much depends on your biomarkers as Cammie says. Presumably you’ve had a FISH test and established your suitability for chemo?

I could be in your situation in the non too distant future and am seeking a second specialist opinion and having cytogenetic testing done in readiness.

Has your haematologist expressed an opinion or just left it to you to decide?

It’s a pivotal time and I can imagine you’re quite anxious about it all.

Newdawn

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No fish test yet, left for me to decide yes very anxious but I will be ok

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You can't decide without a FISH test. Sorry, if you happened to be 17p deleted FCR would be the wrong treatment.

I would sign for the trial, get the testing, then decide.

~chris

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If your FISH shows 17p del or TP53 then you would be ineligible for the trial and qualify for Ibrutinib first line anyway.

The trial offers a 3 out of 4 chance of a novel treatment and includes the possibility of drawing Ibrutinib plus Venetoclax which is showing huge promise. Lots of patients MRD are negative after several months and a short period, limited period of treatment instead of ongoing.

I would go for the trial, you're lucky to be offered it. Best wishes

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Hi Dandleup,

I have also been advised that treatment is very close and face the same choice.

My haemotologist has suggested that FLAIR is a good option however will leave it up to me. My thoughts are that there will be very careful monitoring when participating in a clinical trial so will probably opt for FLAIR due to this.

I wish you all the best for whatever you decide to do and hope that you have minimal side effects and maximum results.

Take care 💞

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Thank you for your advice I am leaning more towards flair but still some scary side effects

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There are scary side effects of FCR and of any treatment. In practice most people find ibrutinib is better tolerated. Like you I may need treatment soon. And like you I’m likely to go for the FLAIR trial. I don’t think anyone is going to be able to tell you 100% which is the best treatment for you unless you turn out to be 17p when it will be ibrutinib for sure. For low and moderate risk patients the jury is still out as to what’s best. Some doctors will advice one or the other. I have written a couple of posts about my own thoughts on FCR vs ibrutinib if you click my name you should be able to find them and there was some good comments on those posts too.

Ultimately if there is no clear view as to what’s best allowing the computer to decide is best as at least the computer isn’t biased to one treatment or the other.

My own gut feeling is that eventually FCR won’t be used any more. But we are not anywhere near that point at the moment.

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Hi dandelup,

I see that you were diagnosed with CLL 6 months ago, and it sounds like you have gotten good advice to your previous 5 postings.

The fact that your doctor is asking you to decide on Chemo but has not done a FISH test is concerning, since the results would show whether you are 17p deleted and should skip Chemo.

healthunlocked.com/cllsuppo...

You may want to try for the FLAIR trial, I suspect they will sort out the FISH results before randomizing you to the 4 different arms including FCR.

Len

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Yes a FISH fest is done in the Flair trial. And if you don’t want to be in the trial you should deffo get one done before doing treatment. During the run into the flair trial you will be given loads of info about all the options and have a bunch of tests. It’s well worth doing that and if you decide it’s not for you drop out but for the sake of the trial please drop out before they randomize you not after!

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dandelup,

I know it is different in the USA vs UK regarding the FISH test....but you absolutely need one before any treatment. In the USA getting a FISH is one of the first one's done along with a Flow Cytometry....

Being diagnosed only last winter and now needing treatment is somewhat fast....not the usual Watch and Wait period. You might of had it for a while before Dx or you might have a more aggressive form of CLL....but that is what the FISH will tell you.

Like others have posted....if you have generic 13Q no CD38/ZAP70 then pretty much FCR is your best bet....17p and FCR is not a good choice at all.

You have not posted your blood test results (or BMB/Lymph node involvement) but before you begin any treatment....getting a second opinion is a good call. I never bothered getting a second opinion for the diagnoses...but I definitely will before I start any treatment

Scott

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I am unclear as to why FCR is suggested to many (non 17p/p53) patients over Ibrutinib. What are the advantages of FCR over Ibrutinib in these patients? I know that FCR can produce long remissions whereas Ibrutinib is likely a pill a day for the rest of your life. But other than that, what other things prompt FCR to be the treatment of choice for “younger” and healthier patients?

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With FCR, treatment only lasts 6 months, so you are no longer living with side effects on a daily basis after treatment. That's a huge advantage, given a significant number of those on Ibrutinib end up discontinuing use because of side effects that impact significantly on their quality of life. Not having the worry of meeting the financial cost indefinitely (and worrying if subsidies will decrease) must be another big advantage.

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From what I read, a good percentage of people taking Ibrutinib have a reasonable side effect profile and tolerate it well. The biggest red flag I see with FCR or any chemo or chemo-immunotherapy is the increased potential for DNA damage and all the things that go along with it - more secondary cancers, bone marrow problems, etc. Ibrutinib seems to have its problems also - afib - bleeding, etc.

What I see in general is that everyone who mentions the downside to FCR often mentions cost. We really don't know the future of "cost" in that (at least in the USA) there are many states that have enacted drug parity laws making the cost of IB much more reasonable, but still expensive for most. There is a version of cancer drug parity being floated around Congress too, though with our really ugly and dysfunctional government I don't see anything happening soon on any front. Yet we still don't know. What I do know is that the higher cost of Ibrutinib will lead to politically motivated arguments against it. Until we remove that from the equation, we really can't assess the "whole picture."

Let me re-phrase my question. Lets put all the cost considerations aside for a moment and look at this from a basic scientific perspective. What are the pro's vs. cons of each?

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We don't know yet. We have about 15 years of data for FCR and about 5 for Ibrutinib...

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Hi, I had fcr in 2010. It was the best treatment at the time. I was lucky in that things went to plan. I had complete remission for 5 yrs and its been coming back for over 2yrs. I didnt have a choice. But fcr isnt good second time around. In uk we are at the mercy of Nhs funding. Iv discussed the pro's and cons of each with my consultant and for retreatment Ibrutinib is better.Unless the Nhs changes its mind, many cant have it. As you said, younger and fitter have fcr again.

Im glad I had fcr because I was free of treatment but I dont want it again.

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Sorry to hear you have had a hard time to get the treatment you want/need now. It just fortifies the concern in my mind that medical systems are a good deal about politics and funding. It seems less and less these days about medicine.

What I still don’t understand is this “younger” being less than 65, and “older” being greater than 65. 65 seems arbitrary. There are a ton of people over 65 who are in better shape than people in their 40’s. As someone who is 65, I see those around me and age is very subjective. While 65 has traditionally been the start of being older - I just don’t think that holds true anymore.

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You have to start somewhere! In practice, those younger than 65 but with difficult to manage co-morbidities will not be offered FCR while fitter patients older than 65 may be offered it and do well.

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Jon

Its actual body age, not calendar years.. there are a number of scoring systems that look at many aspects of a person.

CIRS is common in CLL as is ECOG etc

siog.org/content/comprehens...

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I guess that living in California for the past 35+ years, I have become jaded to the youth oriented society here. If you are over 40 --- you are not young. It's not based on fact, just cultural phenomena - and it's annoying. So when I hear "over 65" - I run for cover. At 65 - I can do a lot more than the many obese 35 year olds.

Thanks for the link. I didn't know there was a medical assessment for it. Good to know the medical community doesn't ascribe to the "ageist state."

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It is definately about money as you say. What is the point of waiting until someone is damaged by repeating chemo. It seems more sensible to start Ibrutinib as best as you can be with cll. Im borderline for treatment. I feel for those who are approaching treatment. It doesnt matter how much knowledge we have, when the time comes it is still daunting. The future looks good for cll but its all new and frightning. Take care, Anne

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Yes, I really think it is about money. Different countries have different approvals for Ibrutinib. Why? Personally I think official (national) standards should not vary from country to country. Ibrutinib has been around long enough and tested extensively. I am sure that the only reason different counties have a different official appoval on the drug is money. Now its not free in the USA (assuming no assistance), but it is a lot cheaper on insurance than retail.

Now in the USA, we are far more corrupt than most places. But why should the NHS deny treatment when the US FDA says “yes?” If access to Ibrutinib was more widespead, its more reason to legislate lower prices from pharma companies.

I’m not saying that Ibrutinib is better than other treatment - but it is a viable option from which people should be able to choose. A national health system should be able to deal with that. Health care expenditures will increase everywhere as we have new advances in medicine and people live longer. We go too far in the USA in spending as a result of corruption in the system.

If a really great med for CLL came out of trial in 5 years - very few side effects and clinically very effective - what do we do? Ask people to take a number and get in line? All of our governments can manage the pharma prices if they tried. Its not simple, but it can be done.

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Hi I was in your position 4 months ago. I went for Flair and let the computer choose. I am 4 months into treatment on Ibrutinib and rituximab and doing well. I would have accepted any arm all have their pro’s and con’s. Good luck with your choice. I hope this post helps.

Kind regards

Ann

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Hi dandelup,

I completed 6 months of FCR last October. I haven't felt this good in years! I hope whichever treatment you decide on, that you end up feeling as good as I do.

Best wishes :-)

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Thank you for your reply did you suffer badly with side effects? And I have also been warned about high risk of infection

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Yes, chemo time was pretty miserable for me, but it does pass and if I had to do it again, with the same outcome I have now, I would.

Infection-wise, hand hygiene is paramount - I washed my hands after touching anything when I was out. I didn't get any infections throughout my treatment. The key is being aware; if you start to feel unwell, you don't leave it for several days to see if you improve before seeing your GP. I was on antibiotics throughout the treatment, which is the usual protocol, and I believe that, combined with the hand hygiene, is enough. It's all about being sensible.

Best wishes :-)

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Glad to hear you're doing so well, Sucee! I start Round 4 of FCR on Monday. Love and prayers to you from Ohio.

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Thank you so much. I will be thinking of you on Monday, and sending a great big virtual hug xox

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I am 61. Male. Fit. No other medical issues. FISH markers good. Told FCR best data supported outcome. 3 cycles in feel amazing. My choice was hard though, despite a good deal of medical knowledge. Good luck.

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I completed 4 of the planned six treatment cycles and then spent a week in the hospital with extreemly low blood counts. My doctor said that it is rare for this to happen and that I can never have FCR again. He said that it almost killed me. I do feel good now and he said that all of the CLL cells are gone. It took a long time for my blood counts to start going up on their own. I had three months of going to the clinic every three days with many blood and platelet transfusions and IVIG's. My platelets are finally above 50,000 and slowly rising. I do get a monthy IVIG to prevent infection. Hopefully if you do get FCR it will not turn out like mine. The side effects during that four months of treatment were strong too.

I wish you all the best with whatever form of treatment that you end up with.

Chris

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I'm very glad you feel good now after going through so much. Wishing you good things from here onward. Prayers from Ohio.

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Must know ur markers...FISH important. I would get second opinion. I am doing FCR now. Blood work great. Feel wonderful. No side effects so far. Just finishing second round. I am mutated, 13 q and 63. All 3 of my docs said FCR is best for me. After 65 they don't recommend FCR. After 3rd treatment will have BMB to see if I can stop. If not, I go till 6 cycles. Didn't like idea of taking a pill rest of my life, has to be stopped before any dental work, sugery, never able to take Aleve again ( my wonder pill when I have any aches/pain) and lots of possible side effects. Heart disease in my family. Was worried about AFib. But many do well. I would never tell someone not to take it. Was my second choice but docs said FCR would be better.

I know there are risks with FCR but I hear great results with most posts. I had 2 second opinions. My hematologist oncologist suggested it. So I had 2 CLL experts help me decide. I hope for long remission. By then they may approve acalabrutinib, which has less side effects.

Good luck!

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GM, I'm so glad all is going well for Round 2! You're in my prayers. (-: I did ask my doc about the BMB, and he said different hospitals have different practices (though he was interested to hear about your experience) and he goes by the blood work instead. He said if they did the BMB and it showed a small number of CLL cells, say 1%, there would be no action taken on that if my blood work were still good and showed no signs of my coming out of remission. Therefore, since there's no action to be taken, he doesn't typically do one unless the patient is not doing well and shows problematic numbers. That was his explanation anyway. I start Round 4 on Monday. He did adjust my dose a bit. I'm doing well and feel much better than I have in years during those last two weeks before the next round comes along. Cheers my heart to hear you sounding so well! Prayers and love from Ohio. xo

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So glad ur doing well! I am going to update end of week. I have Neulasta shot Monday and see doc Friday so I thought by then I could give my second experience. So far great. Interesting what ur doc said. I guess blood test shows important info but since it's a bone marrow disease, my 3 docs said must see what is going on in there. Would hate to stop then find out few months later, I stopped too soon.

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I'll look forward to your update. You're encouraging a lot of us with your positive posts. Good luck with your appointmen,t and I hope the BMB, whenever you have it, shows all is well.

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I opted for Flair trial 2 years ago and got Ibrutinib (ongoing) and rituximab. No problems during treatment and feeling good now. I get intermittent episodes of irregular heart beats but consultant says this is not dangerous. It's slightly disconcerting when it happens but doesn't affect my active life. One thing to hear in mind about the trial is you have more tests, possibly more bmbs as well, though for me a bone marrow was easier than root canal treatment! All the best for whichever route you choose and let us know how you get on.

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WAY to much political & economic wishful thinking, here!!! Get back to the original question - FCR, or Imb.?

CllCanada is almost always right, and many other Administrators agree here, despite the political rhetoric.

- Go for the trial; they will point you in the right direction. If not, at least get a FISH test, and as many here have said, don't choose FCR if you're 17p.

Good luck!

Gary

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Dandelup, I'm doing FCR (the choice of that or ibrutinib was left to me) because it's still the frontline best option for my profile and gives me the best chance for a good, deep remission. I begin Round 4 on Monday. I had the big Rituxan reaction with rigors during Round 1, a lesser reaction during 2, and Round 3 was the gentlest so far, though I know it's different for everyone. In the last two weeks before the next round begins, I've been feeling better and more energetic than I have in a very long time. It's like being the frog boiling away in the warm water, I think, during watch and wait. It's a slow process, so you don't always notice how much it's affecting you. I, too, worry about long term side effects, but this option is most promising for me (my docs at OSU concurred) and I'm hopeful. I know how hard it is to make this decision, with plusses and negatives for every treatment, and I'm sending lots of love and prayers to you right now as you weigh your choices. Please keep us posted. We're all pulling for you!

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How long do u have cll

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I was diagnosed December last year

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