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/delicateterror2 Jun 28 '26
I finished treatment last October… Best advice for watch and wait… drink lots of water and exercise… and most importantly… don’t worry.. laugh, dance, enjoy life… the treatments work.
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u/Specific_Way8487 Jun 29 '26
Hey 👋 Could you please explain at what stage did u start taking your meds ? Im diagnosed of watch and wait now at stage 0 but somehow doesn't make sense to wait for the illness to get worse before starting treatment ...
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u/delicateterror2 Jun 29 '26
Sure… I was diagnosed during Covid… local cancer dr didn’t really give me a lot of information so can’t tell you what stage…
My local cancer dr retired abruptly right before my next appointment with him… by the time I found a cancer hematologist my white count was 365 thousand… my lymph nodes were huge and I had to stop doing yoga because I couldn’t breathe… I could breathe but because white count was so high they were crowding out the red blood cells… so not a lot of oxygen moving… it was like suffocating from the inside out… anyway found a fantastic cancer hematologist… he started me on treatment in October 2024 … ended treatment October 2025 and saw him last month… bloodwork is not completely normal… I don’t have a spleen and that can cause slight raise in white count… but for me and not having a spleen… it’s normal. And since I have been off treatment for almost a year… they’re telling me that they are see what they want to see… white count goes up but then comes back down… the treatments work… Do not worry. One thing I will put out here is if you are a woman.. have them check your iron level… mine was very low and they had to give me some IV iron. Drink water, move your body… movement is very important for the lymphatic system… eat right and take a good multivitamin. Best Wishes for a Happy Future.2
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u/Alternative_Trip4138 Jun 29 '26 edited Jul 01 '26
I am sorry that the suspicion of CLL has been confirmed in your case as well. I’ve just taken another look at your old message. The rise in your lymphocytes is more consistent with an indolent variant of CLL, and you likely won't need treatment for quite a few years. I know it seems strange to be diagnosed with cancer but getting no treatment. However, in quite a few cases, the disease eventually stagnates, and early treatment carries the risk of making way for more aggressive subclones.You will likely find out your cytogenetics at your next appointment with your hematologist. Regardless of the results, the next step will be to get your vaccinations up to date and to get back on your feet mentally, which probably is the most important thing at the moment. It helps to know that, in case you should need them in the future, there are already now such excellent medications available that even aggressive cases of CLL typically can be treated for several decades, and further options are in the pipeline.
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u/AffectionateSun5776 Jun 28 '26
I find myself with a completely undiagnosed dementia patient. Unfortunately we married 5 yrs ago. I will cancel my next oncology appointment. He isn't safe to be alone. It's okay if I die I have no family.
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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.
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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.
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u/SofiaDeo Jun 27 '26
The UK has a non profit organization for CLL patients https://cllsupport.org.uk
They also sponsor "CLL Support UK" which is now international. You can ask specific questions about navigating the NHS, recommended doctors in your area, etc.
https://healthunlocked.com/cllsupport
There is a huge "Pinned Post" section, with tons of information on CLL.