Roger talks about living with CLL

CLLSA Leeds 2018 .In this video Roger a CLL patient, and CLLSA trustee, gives a moving and humorous account of his experience since being diagnosed.

[@mike.47]

I was diagnosed in 2018 and am still on the watch and worry phase. Roger’s advice towards the end to keep your mind active is good, don’t isolate yourself is a bit difficult for me as I live alone and nearest family are miles away. I had a telephone appointment today and my blood test was ok(ish) I do have some experience with leukaemia, my wife was diagnosed with AML in 1997, but after 3 courses of chemotherapy she passed away. She didn’t get to see our 3 children marry nor did she meet our 8 grandchildren.

[@oldradman1478]

Thank you, I was diagnosed about 18 months ago and having some of the same issues. Do appreciate your candor and honest explanation of what happened.

[@myclljourneywithibrutinib5812]

thank you. Today is my first day taking Ibrutinib

[@juliegoncalves121]

@@myclljourneywithibrutinib5812 I’ll put w we a I ma by dhndfjrudjd

[@pedrochip]

Thanks for sharing your story

[@eduardalet]

Thanks for the advice I have had Cll now for 3 years have no symptoms recently my WBC was 217000 and rbc 3.99 and platelets 136 but I ve decided I dont want treatment until I have symptoms or platelets down to 100 and RBC 10 and so far I feel great.

[@auntycvsoldier9174]

Hello nice to have you here. My WBC IS 4.88 RBC 4.44 PLATELET COUNT 237. HEMOGLOBIN 12.3 LYMPHOCYTES 60.1 I was told by my doctor not to worry, but I'm worried because my platelet keeps reducing and my lymphocytes keeps increasing. I've got joint and muscle pain. I've lost weight. I've got this pain and discomfort on the right side of my neck which extents to my eye. I will have to visit the doctor by next week

[@rainonyourparade3045]

Thank you from r encouragement. I start Ibrutinib today

[@rainonyourparade3045]

Apparently it affected my ability to type a simple comment. Lol

[@rainonyourparade3045]

They diagnosed me in August and I was stage 3. I was completely exhausted when they found it so I had a surgery which is why they found it, and after I recovered they started me on Ibrutinib. So far just a lot of muscle and joint pain but my WBC is down to 13 after nearly a month so it’s working.

[@lenp4173]

Thank you sir.

[@djfromlaland]

Thank you Roger for sharing your walk with CLL. I have just been diagnosed and was surprised by this. I had been really tired and that was my only clue in hindsight. What type pills do you take ? My Dr. said I am on the "watch and wait" list so - nothing. I go for blood test every 4 months and I am on a very healthy diet with no sugar. Any tips would be appreciated. Louisiana, USA

[@myclljourneywithibrutinib5812]

Roger mentioned Ibrutinib in his video. I have just started taking it myself. Today was my first day.

[@JAEJourneyAroundEurope]

🙏💛

[@ceciiaramirez3339]

@@myclljourneywithibrutinib5812 gbhgrgr CNN

[@nicoledadson1579]

BBB I’ll killiivjcjg

[@rainabosworthf393]

My son was diagnosed 2yrs ago this was 4yrs after surviving lung cancer at 37yrs old ,hes on a chemo pill seem ok just needs to take a nap every day l would just like to know whats the survival rate after the diagnosis when the treatment is keeping his blood count normal

[@JAEJourneyAroundEurope]

💛🙏