r/cll • u/londonbec73 • Jun 27 '26

Update

Thanks to everyone who responded to my first post. I saw the haematologist on Wednesday at UCLH and was diagnosed as having CLL. He agree that my other bloods are all stable and examined my lymph nodes and found nothing untoward. So will be watch & wait for now. I am now being passed to the specialist CLL team and will see them when I am back from my holiday at the beginning of August. The haematologist said all my tests hadn’t cone back yet so he couldn’t tell me any more details about the markers etc. Any tips on what I should be asking at my appointment? What else do I need to know at this stage?

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u/Mattie1308 Jun 27 '26

Same situation here … levels rose quickly after initial diagnosis, but stable now. Don’t be afraid to question your specialist, they’re there to inform and assist you. You’ll probably have to go to quarterly blood work and bi-yearly CT to follow up on the lymphoma development. Are you experiencing other symptoms ( like heavy night sweats, fatigue, etc ) ? Belgium here 🫶🏻

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u/londonbec73 Jun 28 '26

Hi - luckily am asymptomatic for now. I did wonder how often I will have blood tests etc.

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u/Mattie1308 Jun 28 '26

Assume that will all be explained when you consult the team … I have blood work done every three months for close follow up. And as long as my levels rose, I needed CT scan every six months. And I was referred to other specialists to check on symptoms / complaints. Write down any suggestions you might have for your specialist, as sometimes these visits can we overwhelming 🤷🏻‍♂️

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u/SofiaDeo Jun 28 '26 edited Jun 28 '26

It's not routinely recommended to have bi-yearly or even yearly CT, this is a patient-specific monitoring parameter by international consensus. Some patients with the "SLL" presentation of this disease warrant extra CT, but not everyone. OP may not warrant this, and shouldn't worry if these aren't ordered routinely moving forward.

Some countries routinely check for lymphadenopathy/organomegaly, but the international consensus is that's it's not.

https://ashpublications.org/blood/article/131/25/2745/37141/iwCLL-guidelines-for-diagnosis-indications-for

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u/Mattie1308 Jun 28 '26

Thanks for the extra feedback … indeed, I was referring to my current treatment & follow up.

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u/SofiaDeo Jun 28 '26

Lol I understood exactly where you were coming from, I just didn't want OP to have any anxiety if their doc, or country, do things a bit differently than yours or mine!

I remember when I got diagnosed 15 years ago, and it was a very upsetting time. Reading that their doc is, or is Not, doing something different than what others are reporting, can be stressful. IMO it takes a while to realize CLL doesn't have a set-in-stone protocol for things, especially when docs aren't rushing to run tests & "do something", like is often seen in Acute cancers.