Flair trial

[Daisy1993]

Hi all am new to yr community and yesterday i have been put forward to attend the flair trial. I was given a information sheet and a consent form. To be honest i was quite positive about it until i read the side effects which really scared me. Has anyone had any negative experiences whilst on one of the tablet forms. I feel that am leaning now towards the traditional treatment with chemo. Thank you

[Newdawn Administrator]

Daisy, calm yourself. You’d read the same alarming side effects if you read the leaflets for any treatment including paracetamol! It doesn’t mean with any certainty that you will suffer from any of them! This is your opportunity to receive a non chemo treatment if you’re randomised to the Ibrutinib mono arm or like I’m on, the Ibrutinib & Venetoclax arm. However, I am surprised your unit is still recruiting to Flair at the moment during the pandemic. My unit has suspended it to avoid those being allocated to FCR needing long periods in the Unit.

An alternative would be to ask your Consultant about Acalabrutinib which some people are being given during the pandemic on compassionate grounds.

There can be side effects on all treatments including FCR which is hard on the bone marrow. The real score would be to get the I&V arm which gives an increased chance to achieve a full remission with undetectable levels.

Also, as this is your first post and we welcome you, be absolutely sure you need treatment now after only 2 yrs. You say your bloods are fine but bone marrow heavily infiltrated. What reasons have been given for your need to start treatment immediately. Is it to catch the Flair trial which is ending soon? I’d be inclined to getting a second expert opinion in your situation.

Best wishes,

Newdawn

[annmcgowan in reply to Newdawn]

Hi I know how you fell I felt the same when I read all of the side effects. I am on ibrutinib arm almost 3 years in and have been fine. I totally agree with all Newdawn said.Let us know the outcome.

Good luck

Ann

[Daisy1993 in reply to Newdawn]

Hi newdawn, ann mcgowan and jm954 thank you all for replying. I forgot to mention that i have lymph nodes that r growing and pressing on a main artety that can cause blood clots. So it was decided i needed some form of treatment and my consultant referred me for a second opinion also looking at this trial flare. Since posting i have decided to go for fcr treatment. I will keep u all updated how i get on. Good luck to u all and keep safe and well xx

[Newdawn Administrator in reply to Daisy1993]

Hi Daisy,

It would appear there is some lymphadenopathy that is propelling you into earlier treatment and that’s fair enough if you’ve had a second opinion.

As Jm954 , Jackie said, FCR can be a good option if you’ve got less aggressive markers and are IGHV mutated. In the present climate, where it involves long periods in the infusion room, it’s a curious choice to be honest but I know some people like the option of simply getting it over with.

Whatever you decide, I hope it goes well for you.

Newdawn

[Daisy1993 in reply to Newdawn]

Thank you x

[Phil4-13 in reply to Daisy1993]

The best of luck to you, Daisy1993. Your doctor sounds very attentive and thorough. Sandra😊

[Big_Dee in reply to Daisy1993]

Hello Daisy1993

I understand your choice and wish you success in your journey. Blessings.

[Jm954 Administrator]

Hi Daisy,I would be very mindful of Newdawn 's comments about the FLAIR trial ending soon plus the need for intravenous treatment and therefore hospital visits at this time with covid.

Do you know the results of your FISH testing and your IGHV mutation status? That would be important to know before agreeing to the trial. If you go in the trial your randomisation will be between 2 novel therapies and traditional chemotherapy FCR.

If your makers are good then you can do extremely well on FCR but if you are unmutated or have markers other than 13q mutated I would be careful.

As you are being offered FLAIR your doctors will have determined that you are fit for FCR and, because of that, you are not able to access the compassionate access Acalabrutinib.

However, you can opt to have Venetoclax + Obintuzumab, outside a trial, via the Cancer Drugs Fund if you are in England. This is a limited time treatment that is giving very good results in all patients, irrespective of FISH and IGVH mutation results.

In summary,

as Newdawn says, be sure you need treatment and they are not rushing you in order to enter you in the FLAIR Trial. Here are the guidelines: ashpublications.org/blood/a...

Know your FISH and IGHV mutation results before agreeing to FLAIR. If you are unmutated then, statistically, chemotherapy may not give you a long remission although everyone is different. When you know your results, come back to us and let us know.

Do you have high blood pressure, heart problems or are on anticoagulants? All of those would be a negative for the FLAIR trial as you have a chance of being allocated Ibrutinib which can make those things worse and anticoagulants are contraindicated.

The side effects are almost certainly going to happen which ever treatment you have and some people have them more severely than others. The side effects of FCR can be infection and damage to your bone marrow to name a few, which can be long lasting and ongoing. Remember that they are obliged to fully disclose everything that can be a side effect so please don't be too worried about the long list. If it wasn't safe, it wouldn't be used.

Let us know

Jackie

[Sepsur]

Whilst my Flair trial journey hasn’t been without its drama - I’m glad I did/ am doing it. You maybe randomised for FCR anyway.

I was given ibrutinib Venetoclax arm of trial. I looked like Jabba The Hut - my lymph were so swollen. Within 11 days of taking ibrutinib - my swelling had all but gone. So if ‘pressing on an artery’ is forcing the issue - from my amateur perspective- that would be a compelling factor

[Daisy1993 in reply to Sepsur]

Am glad it worked well for u and wish u well for the future x

[very]

Daisy my husband had 6 cycles of FCR, he did have nausea for 2 days after each cycle He is now nearly 6yrs post-FCR.Jenny uk

[Daisy1993 in reply to very]

Thank you that is brilliant news. Feel more positive today x

[JT67]

Hello Daisy, I have nothing learned to add to the excellent replies you have received already. Everyone's experience is unique but I was in the same place as you a year ago. I told my consultant that I just wanted FCR to get it over with as my lymph nodes were so swollen and had been so painful for so long. On top of that I was almost completely deaf owing to swellings in my head. He spent a lot of effort persuading me that I should go for FLAIR and I am very grateful that he did. I was allocated Ibrutinib only and was amazed at how quickly it started working. The side effects for me have been pretty minimal. The consent form was the scariest part of the journey, for sure. Sometimes you just have to close your eyes and jump in. You also get better monitoring on how things are going, which is reassuring. Of course you must decide what is right for you. I just wanted to say that I had decided to go the FCR route but was persuaded not to and I am happy with the outcome, so far!I wish you luck with whatever choice you make. I am sure it will be the right one for you.

All the best, John

[Catnap7]

Hi there My blood markers were ok BUT my lymphs were huge I did chemo ONLY because I was choking from the size of my lymph I later found out it didn’t work due to my CLL type. It all came back with in a year. I hung in there as long as I could and then got in Ibrutinib /Venetoclax trial for relapsers I am out the trial door in February

There are plenty of natural products and meds to use to help combat the side effects of the cancer drugs. There are plenty of things to do to help you feel better while on the drugs I was so afraid of the side effects but now so glad I did the trial. AND NOT EVERYONE gets bad side effects Lots of people don’t have a problem. My dosage was EVEN reduced and I still got MRD negative

I feel blessed and I certainly wouldn’t have been able to write this if I had not acted

Good luck to you

Catnap7 🐈

[bennevisplace]

Daisy, I did Flair and was randomised to FCR. Big advantage that treatment was over in 6 months, big downside that bone marrow function was very disrupted for 11 months and still counting.

Whatever therapy you choose should be - no, must be - in the light of a FISH analysis to determine the mutation status of your CLL cells. Crucial!

So in your place I would print out the above reply by Jm954 and discuss with your specialist before deciding.

[Daisy1993 in reply to bennevisplace]

Thank you. They did tell me that they would look at my fish results as i may not be suitsble for chemo. They have looked at my results and my p53 is fine to go ahead with fcr. Xx