Six monthly

[cartwheels]

Had my 3 monthly today, and talking to my consultant he said my lymphocytes are now up to 5 , whatever that is been on ibrutinib 6.5 years have lost weight a little recently although I have been suffering from vasculitis of the skin for 8 months he says that might be linked to my cll . Now wants another blood test in 6 weeks rather then 12 and then will see what is next. Which he said would be ven with rituxamab. In some ways relieved as hospital still doing tests on my skin issues which they said is vasculitis probably from my 6th COVID jab but another skin biopsy in two weeks. So if my skin issues are from my Cll then at least I know what direction I might be going

[AussieNeil Partner Founder Admin]

You're now around the median time for progression free survival on ibrutinib, so if your CLL is beginning to develop resistance, it's good that you know now what treatment path is awaiting you. If your skin issues are from your CLL, you can also look forward to some well deserved relief. You've done well accessing non-chemo treatment options in the UK, particularly given you had 17p deleted CLL - how things have changed for the better since you were diagnosed! You've also timed how long your first CLL treatment looks likely to last, so that you can continue on a non-chemo treatment path without the stress of trying to find a suitable trial. With the exception of your vasculitis, you are doing well on your CLL journey - and bringing hope to others following you , in particular with what used to be a challenging prognostic marker. Keep this up and "tomorrow will always be your future" as you encapsulated in your bio comment.

Neil

[cartwheels in reply to AussieNeil]

Thanks Neil

And I'm always positive I don't fear further treatment I gave myself 5 year target on ibrutinib and I have surpassed that might get another 6 months on it or more before they decide to switch if needed, my numbers might stabilise. In regards to vasculitis that could be a trigger for my numbers increasing and on the other side I look at the fact maybe my cll being back is one of the leading factors in my vasculitis. Ether way my proposed next treatment when needed VEN with rituxamab is a good one especially as rituxamab is used also to treat vasculitis so a win win . Interestingly my consultant said it would be a two year course with a break after hopefully remission and a re start when needed. Which is a change from his original projection 5 years ago when he said my next treatment would be VEN as a two year pathway to a SCT , so things have progressed for the better which once again highlights that tomorrow will indeed always be the future 👍