CLL FLAIR trial

[sallyplest]

Hi everyone

I was diagnosed 3 1/2 years ago and have been W&W since then. My consultant has now told me that I may qualify for the FLAIR trial as my lymph nodes are enlarged in my neck and I am having a CT scan to investigate further. I am scared after reading all the info from the Research nurses as the side effects look horrific. I wondered if anyone here is currently undergoing FLAIR trial and if they can give me any advice and information about what to expect.

[AussieNeil Administrator]

While you are waiting for responses from those who have been on the trial (and it's a common treatment option in the UK), check these previous posts: healthunlocked.com/search/f...

Also, you'll get more and more detailed replies if you select the option 'Only followers in my community' in response to the question 'Who can see my post?' when you create or edit your post. Select the 'v' under your post and then select 'Edit' to change your post's viewability.

Neil

[MF79]

I finished the FLAIR trial in July last year. I was on the FCR ARM of it. You might get the ibutrinub which I can't comment on. The treatment was challenging at times. I had a couple of hospital admissions. However one thing you will discover here is everyone is different. Generally treatment week and into week 2 I wasn't up to much . Sickness was a problem for me. Weeks 3/4 was able to to a good bit more . I managed to avoid the flu when my family had it with a lot of handle cleaning and keeping them in separate rooms .

However after the first lot of rituximab shape returned to my neck. My energy has now returned and my follow up scans and bone marrow show me in remission.

Would I do it again? Yes probably. Knowing how I feel now. Hopefully when I need treatment again there will be less aggressive treatments used as standard but FCR has done what it said it would.

[sallyplest in reply to MF79]

Hi

Thanks so much for reply, I'm so glad I found this site because I know nothing. How long were you on the trial and were you told at the start of the trial which arm you were taking part in.

[MF79 in reply to sallyplest]

I had 6 rounds of treatment over 6 months. And you are told before starting treatment what you are getting. Initially disappointed not to get newer drug but that didn't last long I was aware FCR was an effective treatment. I'm still on the trial as it includes long term follow up.

I had bone marrow biopsy. Not the most enjoyable experience but not the worst.

[terryI_uk]

Hi Sally, I am on flair trial, iR arm, and in my 19th month of treatment, I have responded well to drugs and now in remission with levels, scans and bmb all normal, some niggling joint and muscle pain but all manageable, hopefully all will go well whichever treatment you receive, good luck, Terry

[sallyplest in reply to terryI_uk]

Hi Terry

Thank you so much for replying. I am very pleased to read that you have responded well to treatment, I think with myself it is the fear of the unknown regarding side effects and one of the things I am terrified about is the bone marrow test which I have read horrific things about.

Regards

Sally

[terryI_uk in reply to sallyplest]

I think it depends who does the biopsy, I've had 2 so far the 1st one much more comfortable, big chap 1st time, small lady next so maybe it's a strength issue lol, Terry

[sallyplest in reply to terryI_uk]

Thanks Terry

I can't say enough times how good it is to find people with the same condition as myself albeit different degrees and stages but I didn't know anything and my doctor knew less. My consultant is on our local research board so is Very knowledgeable.

[Calopteryx]

Hi, I'm on the Ibrutinib arm of the Flair trial. I started treatment back in March. The 6 x monthly infusions of Rituximab were fine, and the nurses are very alert to any possibility of side effects or reactions. Apart from feeling tired afterwards there were no problems. The Ibrutinib side effects have been mild for me so far. Just very dry skin and hair, and a bit of extra bruising in the early days. Some sporadic joint discomfort too, but it soon goes. During the whole course of treatment I've worked full time and been promoted, so very little disruption to normal life.

Please be reassured that the anticipation is often the worst part. I worried hugely about treatment in the weeks beforehand.

All the best, C

[sallyplest in reply to Calopteryx]

Hi

Thank you for putting my mind at ease, I realise that the fear of the unknown is the worst thing and also everyone is individual and therefore different. I hope I am as lucky as you have been.

Thanks

Sally