Nearly ten years since being diagnosed with cll

first let me re-introduce myself my name is Jeff alias(dad1929), my first post on this site was in 2010 when I found out I had a blood cancer,chronic lymphocytic leukemia,for which I received chemo in 2010/2011,and I am glad to say that I am doing fine which for anyone out there newly diagnosed I hope you can take some inspiration from the fact i am still here and going strong,despite this dreaded corona virus being around ( God bless all those affected by it),I know that when I first contacted the site it certainly helped me and I was greeted by a lovely man by the name of Tony songhurst who unfortunately past away and also a lovely lady called dizzie who also past away but they were really inspirational people who always kept you going despite their own cancers and i will never forget them,and the many others who were always there for you,so I thought it was about time I updated on my current state of health which is (champion) which we say up here in Newcastle,so for now take care and try to stay positive and keep your chin up,cyber hugs to you all. Jeff alias (dad1929).
  • Hi Jeff

    i hope you are well?

    My father has had CL monitored for 11 years, then was getting ready to have the chemo in Feb 2023.  To this end he was given the pneumonia and shingles vaccines together which knocked him for six and made him I'll. (poor decision by the nhs- yellow card filed)  

    He went to hospital, came home after some blood a few weeks later , but then developed an eye infection from a bacteria similar to legionella's from his prior stay at the NHS.  He was resubmitted again into hospital and was getting the infection under control with a cocktail of antibiotics after two weeks but the NHS then hit him with Covid.  He has no symptoms from the covid, but we elected to take the antiviral covid tablets. The infection markers are near,y normal and he is due to shift the covid in a weeks time, still strong but his kidneys are taking a strain.
     

    Today he was told by the NHS his body is to week to commence the Chemo next week for 12 months  (like you've had) but now offered a twice daily tablet which is exspected to give him 85% chance of 3.5 years. We are gutted as had in our mind 2023 to support him through the chemo and he enjoy life again. 
     

    The doctors feel although he can commence chemo (and swap to the tablets later if needed ) that if he gets another infection over the 12 months he will probably die due to the increased inability to fight it with a reduced immune system.

    So we are left with a weeks notice to decide what to do, with a list of questions.

    It would really help my father to be able to speak to someone(s) who have been in this situation, or had either treatments - is this possible?


    kind regards David 

  • Good morning David

    I'm sorry to hear about the situation that your dad finds himself in regarding his treatment options. Obviously, it's a worrying time for you all. 

    Hopefully, some of our members who have experience with this diagnosis will reply to your post but in the meantime, I wanted to let you know that if you or your Dad would like to chat with one of our specialist nurses you're most welcome o give them a call. I'm sure they will gladly offer any advice and support they can. they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    Best wishes, 
    Jenn
    Cancer Chat moderator