Introduction CLL diagnosed

Hi my name is Russell, first comments on this group, so firstly happy New year to everyone, it seams along time ago.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 3 years ago, and I have my annual blood checks, which all been good and where the GP wants them to be. I have had 3 Covid jabs and had arranged for the 4th and then I became positive from a family member. Last Friday I had a infusion of the new drug being offered to patients in the vulnerable group. I have had no side affects and yet i’m still positive with the LFT test. I am interested in future research and would be interested in joining or participating.


Hi @Russell and a great big welcome to our forum.
I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed in 2003 and I have been on watch and wait ever since.
I have my 4th/booster vaccine this Thursday.
I am sorry to hear that you have tested Covid positive and really good news that you have received that you have received an infusion of a new drug being offered to the vulnerable group.
You will find that we are so lucky as Blood Cancer UK fund so much research and also trials and they also keep up updated on the Blood Cancer UK website with developments and they also lobby on our behalves.
So much progress has been made with vaccines etc in the last 2 years.
I will copy your post to @BloodCancerUK so they read your post. If you would like to talk to someone the Blood Cancer UK support line is there for you
I hope you are looking after yourself, are not feeling too bad and will test negative soon.
Please keep posting and I look forward to hearing more about you.

I’m glad everything h went smoothly and you are feeling ok so far. It’s good to hear when things go well :blush:

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Hi @Russell,
Welcome! I’m so pleased you have found our forum, it’s a great place for peer to peer support. I’m sorry to hear that you have covid, i hope you’ve not been hit hard. It’s also great to hear that you have had access to treatments and that it went smoothly. May i ask was it generally a straight forward process for you? We do understand that for some time people may continue to test positive via LFT’s. How many days now are you now into your isolation period?
In terms of current studies for our community we have recently announced a study called MELODY, which will look at how many people with blood cancer have antibodies to Covid following vaccination. However at this time, with ongoing covid your eligibility may need to clarified.
I have attached the trial website for you here- The MELODY study.
In addition to this, If you live in England and either, have been diagnosed with cancer in the last year, having cancer treatment or have blood cancer, you can enrol to participate in the National COVID Cancer Antibody Survey- National COVID Cancer Survey – Antibody testing to safeguard, protect and monitor individuals with cancer
The National COVID Cancer Survey is evaluating antibody tests in individuals living with cancer. Again you may need to clarify eligibility due to your recent covid status.
As @Erica has rightly mentioned, our support line ( 0808 2080 888) are here for you at any point should you wish to talk things through.
I wish you a speedy recovery & take care, Lauran


Hi thank you for your reply, the process was excellent as you’d expect, it took 3.5 hours, by the time you’ve got to the room, had a cup of tea and the process explained. I had my observations taken 9 times during the process, i.e. Temp, blood oxygen level and BP. They explained there might be some side affects and that is why the process takes the time. Every day for 14 days I have a phone call as they ask you to record your Blood Oxygen levels, with an oxy metre, and your temperature as well ask how you feel. Today is the second day of testing negative so very pleased, I was in isolation for 12 days overall. I have today done a antibody blood test, and the NHS have asked me to do another, I feel this is critical for EVG patients as its critical to record what the immunity levels.

I will keep you posting and I will take part in the National Covid cancer Survey.



Thanks @Russell for taking part in the National Covid Survey, data is so vital.


Hey @Russell Thanks for updating us and sharing your experience.
It really does sound like it went quite smoothly and its brilliant to understand who the process worked for people in reality.
Also excellent news you are now showing negative via LFT’s.
I do hope you’re keeping really well now and to some degree i’m sure you must have a strange sense of relief for not only coming out the other side fairly unscathed after what has likely been months of uncertainly and lots of ‘what if’s’ but also now having the affirmation that you have an excellent treatment plan should covid rear its head again.

I wish you all the best moving on and do take care, Lauran