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CLL Support Association
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No longer eligible for FLAIR trial

Having been called back to see my consultant for what I thought was a routine check up, was caught off guard to be told that I could not continue with the trial. There should have been a review of the genetics test before starting as it has shown I am P53.

I am in a state of shock now, not quite sure what the think or do with myself.

19 Replies
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Oh bless you, that must have been a shock. How on earth was such an important point overlooked? So sorry Kas, you must feel very up in the air. Were you given any idea as to what's next?

Peggy

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He was most apologetic but the treatment is the same less to rituximab for 6 months in which time my sister will be tested to see if she is a suitable donor (1 in 3 chance) and then I will have a bone marrow transplant.

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Sorry to hear that I did wonder how you were on a trail. But be positive ibrutininis a fantastic drug and after that you will have r to fall back on which is standard treatment plus there are new trails coming out of China which look good

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Thank you. P53 wasn't known till after i started which is a blunder by the medics. I have the chance, of course, of getting clear of CLL through the bone marrow transplant albeit it a long journey.

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Did not think they done bone marrow transplantation any more since the arrival of new drugs that's the impression I got from my consultant

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It appears that they do for this mutation x

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Well that's good best of luck x

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And you. Hope it all goes brilliantly

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Thanks been feeling really tired of late with pain in my lower back left side . Wednesday can't come soon enough x

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Why are you not being considered for Ibrutinib or venetaclax?

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I will remain on ibruitinib but will ask about the other. Didn't have the mental capacity to think of questions at the time but I will be asking on my next visit in a couple of weeks

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Wishing you all the best. I pray that they figure it out soon ,And you can get a long remission.

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I'm so sorry you've had so much to deal with in a short time since diagnosis. I hope your sister is a match and everything goes well for you from now on xx

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Thank you. I am holding onto being cured of this thing by end 2018 x

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Sending positive wishes that happens for you x

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KAS8, how very unnerving for you. I wonder why they didn't know that information upfront? Did they tell you what will happen now as far as treatment is concerned for you?

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Staying on Ibritrinib for 6 or so months and then bone marrow transplant. Saving grace is my age (47) and overall fitness levels I think.

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I would definitely research Venetoclax some, though it would be nice to know whether your sister is a match. Good to know all of your options.

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I've added it to my list of questions being emailed over on Monday!

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