Little nervous

[stewie]

Hi, my 6 years on the flair trial will be up in the next few months, I have been really lucky I have had no issues taking ibrutinib over the 6 years and I now feel I have lost my comfort blanket and will be on my own with out my trusted friend, I had a frank decusion with my research nurse about stopping obviously I have always been aware of this from start, the trial lasting 6 years but now its near I am a little apprehensive well more than a little, Happy new year to you all

regards

Stewie

[Ernest2]

Hi Stewie,

I have to agree when I came to the end of FLAIR (in the FCR arm) I was more than apprehensive with a sinking feeling I was about to fall off the end of a conveyor. Silly really but very hard to dismiss.

Funny things happen though, and I was, not sure how to put this, very pleasantly shocked (no words fail me here) when the hospital kept me on for monitoring, so I still have all the right phone numbers for that day I might just need.

COVID I suppose is the big worry, and it never gets simpler.

Now obviously Ibrutinib has done well for you, but after stopping for a while, would you like to try one of the other treatments, and perhaps attempt one of those you take for a while then stop for a bit?

Wishing you a smooth ride and a very Happy New Year.

Best wishes to all,

Ernest

[SofiaDeo]

My research specialist also sees "regular" patients, perhaps yours does too. It's somewhat comforting knowing that *if*/*when* I have issues and need treatment again, the same doc will be doing it.

[very]

My husband is 6 yr 6 months post the Flair trial,and he sees his consultant every 6 months.

Jenny uk

[CoachVera55]

Hello All & Happy Holidays🎉🎉🎉 I am a CLL Leukemia Survivor for 13yrs & just reached RAI 4 Binet C. Funny thing is I don’t want any treatment. I am predominantly Raw Organic Plantbased Wholefood & Juicing Diet. I had bowel obstrutive type symptoms that have reversed, Hemoglobin 10.5-11.7, Platelets 77-89, WBC 89-77 & weight 275-262. I was instructed to do organic coffee enemas but I haven’t tried it yet. I follow the Seventh Day Adventist Health Message 8 Laws of Health to the best of my ability & I am seeing a reversal of symptoms & disease. My prayer is to stay here🙏🏾 I don’t do vaccines & I stay secluded but am enjoying my newly renovated Custom Kitchen & Homegym. What y’all think my chances are?

Weight loss

[LeoPa in reply to CoachVera55]

Hi Vera, it's all individual and only your numbers can hint somewhat at what your chances are. The trend is your friend, or enemy. Given the current treatment choices you should do fine no matter when you start your treatment. Good luck to you.

[LeoPa]

Amazing how quickly six years can fly by isn't it? Wishing you a treatment free long remission, before you restart treatment (if ever) with something even better than Ibru.

[Analeese]

You have done well with lifestyle changes. As a very positive person a healthy lifestyle is a great choice. Hopefully you will have a long wait and watch. It is your decision about treatment choices. Gather all the information you can as all of us on this forum strive to do.