63 year old male with CLL

[JB656]

Looking like I will need treatment soon

Blood results not great but hopefully it’s just a blip or an infection

[SandandWind]

I wanted to avoid treatment but the time came. Just 3 weeks in or so. About two weeks in, I realized that I could envision feeling like a normal person again. While everyone’s journey is different, try not to fear treatment. I also get the sense you don’t want to let yourself get too worn down. I hope you have access to a CLL specialist. I feel like mine landed the plane just right. Good fortune with your journey.

[JB656 in reply to SandandWind]

Hi and thanks for your reply. I am based in the UK and I could be entered on a trial which has a choice of 3 alternatives (apparently a computer chooses) so I do not have a choice so I will wait and see, I have a lot of daunting information from the hospital, but as time goes on I am much more relaxed.

Anyway thanks for your reply and I wish you well with your treatment

[AdrianUK in reply to JB656]

Sounds like the FLAIR trial which I think will complete enrolment at some point this year. I and many others on here are in that trial.

[JB656 in reply to AdrianUK]

Yes it is the flair trial and this will end at some stage this year, but if it ends, then the chemo will be the only choice until/if or when the drug alternatives would be available which could be a few years according to my consultant

[SandandWind in reply to JB656]

I hope you get the opportunity for the treatment you are most comfortable with. I was randomized for the trial - just fortunate to get the arm I wanted. Though by the time I had found out I had decided that I was okay with either arm. Best wishes.

[JB656 in reply to SandandWind]

Yes I am at that point I do have a preference but will accept any willingly

[Trev1 in reply to JB656]

What region of the UK are you in?

[JB656 in reply to Trev1]

Derbyshire attending Christies

[Trev1 in reply to JB656]

I’m North Lincolnshire and St James (Jimmy’s) Leeds. I was diagnosed at a similar time and I’m on watch and wait

[JB656 in reply to Trev1]

Hi You are in a good place The Fair trial is co ordinated from there, and is a centre for CLL. I transferred from my local hospital and now feel fully justified as the care and treatment I am receiving from Christies is much better.

I was diagnosed in 2017 but for 3 annual blood tests for cholesterol I was asked if I had had a cold or chest infection as my white cell count was high, then I was surprised to be told I had CLL which I knew nothing about. My wife contacted Bloodwise and we attended a conference in Liverpool and found out a lot about CLL and this decided me to move to a centre specialising in CLL for if I would need treatment. Now it appears that I will start treatment and am totally happy with the care I now receive.

Take care and stay positive I have met a few people with CLL who have never needed treatment, hopefully you are one of those,

[debdetermine58]

Hi! JB656🙋‍♀️, I WISH YOU THE VERY BEST IN YOUR TREATMENTS❤, TRY TO STAY POSITIVE🤗, YOURS IN HEALTH, DEBBIE🙋‍♀️.

[JB656 in reply to debdetermine58]

Thanks and take care

[debdetermine58 in reply to JB656]

You too!!!🤗🙋‍♀️