Big day for me

[dandelup]

Today is the day I discover which arm of the Flair trial I am going on, and next week I start whatever treatment I have been selected for, slightly apprehensive but also glad that treatment is starting and hopefully will get my old non fatigued life back in the not to distant future. Best wishes to you all with this grotty disease.

[Jm954 Administrator]

I remember feeling very anxious and thinking I didn’t care what I was going to get but I broke down in tears when they told me Ibrutinib, I was so grateful to have that chance.

I’ll be thinking of you, hopefully you’ll soon be feeling like your old self and better days are ahead.

Let us know what you get.

[dandelup in reply to Jm954]

Thank you I will let you know

[AdrianUK]

Good luck. I’m not far behind you. One more blood test on Tuesday and I will then start the screening process for flair unless my levels have miraculously changed direction. How was screening for you and how long did it take?

[dandelup in reply to AdrianUK]

I opted for trial three weeks ago and on that day I had a load of bloods taken and a ecg done, yesterday I had a mri scan most trial patients have a ct scan but I was not well after my last ct as the contrast they put into you made me shiver like mad so bad my wife thought I was going to die, and I also suffered blurred vision. So trials team at Leeds said they would accept mri. Today I have lots more blood tests, a physical examination by haematologist, then the research nurse phones Leeds enters a code and is given my treatment option. And I am booked into hospital next week for it all to begin, I have kept an open mind about treatment so whatever I get I won’t be elated or deflated, well hopefully not lol good luck for you and I hope it all goes to plan I will let you know what arm I am selected for later today.

[annmcgowan]

Hi I’ve been there so know how you feel. I hope you get your arm of preference, if you have one. Let us know.

Good luck

Ann

[dandelup in reply to annmcgowan]

Thank you I will indeed let you know

[Newdawn Administrator]

I eagerly await your result dandelup and it’s been very useful reading about the preliminary testing. You’re in very good hands!

Best wishes,

Newdawn

[dandelup in reply to Newdawn]

Thank you Newdawn I will post more info later today appointment at 12.45 so as they say watch this space

[Peggy4]

Good luck today. Update us.

Peggy 😀

[dandelup in reply to Peggy4]

Thanks Peggy will update later today

[Justasheet1]

🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

[dandelup in reply to Justasheet1]

Many thanks

[migirlusa]

Good luck. Let us know what treatment you will be getting.

Pam

[Jam66]

I am on the flair trial and was very lucky to get the ibrutinib + venetoclax arm.I have been on the treatment for a year now with excellent results.Wishing you all the best .