No longer eligible for FLAIR trial: Having been... - CLL Support

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No longer eligible for FLAIR trial

KAS8 profile image
KAS8
19 Replies

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.

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KAS8 profile image
KAS8
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19 Replies
Peggy4 profile image
Peggy4

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

KAS8 profile image
KAS8 in reply to Peggy4

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.

cartwheels profile image
cartwheels

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

KAS8 profile image
KAS8 in reply to cartwheels

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.

cartwheels profile image
cartwheels in reply to KAS8

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

KAS8 profile image
KAS8 in reply to cartwheels

It appears that they do for this mutation x

cartwheels profile image
cartwheels in reply to KAS8

Well that's good best of luck x

KAS8 profile image
KAS8 in reply to cartwheels

And you. Hope it all goes brilliantly

cartwheels profile image
cartwheels

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

Justasheet1 profile image
Justasheet1

Why are you not being considered for Ibrutinib or venetaclax?

KAS8 profile image
KAS8 in reply to Justasheet1

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

Ballyhoo77 profile image
Ballyhoo77

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

SuzeJc profile image
SuzeJc

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

KAS8 profile image
KAS8 in reply to SuzeJc

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

SuzeJc profile image
SuzeJc in reply to KAS8

Sending positive wishes that happens for you x

pkpayne profile image
pkpayne

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?

KAS8 profile image
KAS8 in reply to pkpayne

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.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

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.

KAS8 profile image
KAS8

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

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