Hi everyone, month 3 completed on my treatment, things are going well, I’m almost back to feeling as I was before treatment started which was very well, the only thing to report is that I have a painful and bruised muscle in my right elbow, this may or may not be due to the medication, I will get in touch with my consultant, I hope everyone is as well as they can be, wil post again next month.
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Yes @Briank please do post again next month, if not before to let us know how you are and what you are up to.
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Hi @Briank. It’s great to get an update from you and to hear how you are getting on. Always good to check with your consultant. Let us know how you get on😊
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Month 4 of my treatment, everything still going well, I just get the odd small bruise now and the then, I’m feeling really well and putting my lost weight back on with a vengeance, my white blood cells are falling well, my consultant is very pleased, he has now put me on 8 week telephone consultations, the problem with my arm last week was caused by me overworking the muscles and causing a bad bleed, I won’t be making any more bird tables for a while, best wishes to everyone and hoping your as well as can be.
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Hi @Briank, thanks for the update it sounds as if all is going well especially if the consultant is pleased with you and has put you on 8 week telephone consultations.
Yes, no more bird tables for a while.
Please keep updating us and take lots of care you and your body have been through a lot emotionally and physically.
A little late with my input this month, have been under the weather ( nothing disease related ) everything is still going well, for the last month I have had no bruising and no muscle pain, I hope it stays that way.
I recently joined a study to test the efficacy of the covid vaccines on people who have CLL, run by The University of Birmingham, that study is now complete, it was shown that patients on watch and wait have quite a good response especially after the second jab, unfortunately not very good for patients on treatment.
I was asked to join another study also lead by The University of Birmingham and involving five other University’s, this one is called OCTAVE DUO, this is to test if there is any improvement by a third booster jab to patients on treatment using a different vaccine from the one patients first received, I have received my third jab, I patiently wait for the results.
My best wishes to everyone.
Brian
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Hi @Briank great to hear from you and to know everything is still going well, but sorry to hear that you have been under the weather.
I was part of the original CLL University of Birmingham study into the effectiveness of Covid vaccines.
I am glad that you have had your third jab, was it a different vaccine to the other two you had?
Stay well, take care of yourself and keep posting.
Yes Erica, it was a different vaccine, after you had signed the consent form you are randomly selected for one of three vaccines, either Pfizer, Moderna or Novavax, my first two jabs were Astrazenica, my latest was Moderna, I had no reaction at all from my first two jabs, but I felt quite poorly the day after this one.
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I’m about to join the acalabrutinib club (when the Royal Marsden gets its act together - see my rant here): better out than in 
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@BobK99 rants are always better out than in, please keep posting and letting us know how you are doing?
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Yep - rant away - it’s therapeutic!
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Please let us know how you get on with your Acalabrutinib treatment Bob, hope they get their act together soon so you can get the benefits of the treatment as I did.
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We like ranting on here @BobK99 . I frequently rant as people who know my story will tell you!
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