Following up on my introductory post yesterday I had a question. And thank you all for your insight and for sharing your knowledge with me so far!
As I'm playing the waiting game to get a formal diagnosis I was curious about those of you who have/had MBL.
From what I understand MBL always precedes CLL, but most cases of MBL to not progress to CLL. What have your WBC and ALC looked like with MBL? And if it progressed to CLL did you have a formal diagnosis of MBL prior to being diagnosed with CLL?
Thanks!
Travis
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travisgf87
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Hi there! I started off with a formal diagnosis of high count MBL in March 2020, when my ALC was wobbling between between 4 and 9. During 2020 my ALC rose to 12, and I guessed I was in CLL territory, but in the UK they don't normally change your diagnosis. However, due to the pandemic I wanted access to those precious vaccinations, which weren't available to us with MBL. So in early 2021 I requested a formal CLL diagnosis (probably the only person in the world who ever wanted cancer!) and got it. 4 years on my ALC is around 30, though it can peak at 50 or so, I'm feeling generally well though more tired and infections take longer to shake, so I obviously have a slower moving version of the disease. I've had Covid 3 times and survived. Life is good. I hope your journey through this, if it comes to it, is as smooth as mine.
I was diagnosed with MBL in 2016 . I cannot find the data anymore but I believe that it evolved into CLL within a year, could be a bit longer...Today, still on watch and wait, lymfocytes at 68,000.
For what it's worth. I was never diagnosed with MBL, at on point my bloods were monitored for 4 months due to suspected leukemia, but I wasn't diagnosed with SLL, the tissue based version of CLL for nearly 20 years after that at age 57.
Was it an infection my immune system struggled to throw off and not MBL? Maybe, I'll never know! All I know for sure is that not knowing saved me almost 2 decades of "what if's". I got to live my life without that niggling concern on the rare occasions I did get sick.
That's the thing with this disease, it's progression or not is as individual as ourselves and our immune systems. Definitive answers or guarantees are in short supply, with the
exception that Dr. Google is unreliable and outdated. If you do need treatment, the advances in science/medicine means a likely hood of normal life expectancy, and dying with this thing not because of it.
It's smart to educate yourself & I am truly glad you found this group. At most, the only advice I can offer is to live your life. A healthy diet, healthy lifestyle is always sensible. Taking care of yourself, and that includes your emotional and mental health really does matter. What helped me was learning to differentiate what was within my control and letting go of the rest, getting comfortable with uncertainty and having strategies to deal with the anxiety it induces. It was hellish, but a valuable skill. That's just me & our journey won't be identical.
That's where I am struggling a lot, with the uncertainty. And having no idea what might happen. Having health anxiety on top of it my mind goes to the worst case scenarios: Richter's transformation, having the worst markers, etc. I appreciate the response and advice.
Do you remember what your counts were around prior to the official SLL diagnosis?
I'm sorry you are struggling, it's understandable and you're definitely not alone with the health anxiety. It's also important to recognize that coming to terms with a new diagnosis like this is huge because of the uncertainty. It takes time & when the anxiety takes you down that rabbit hole, it's worth reminding yourself that anxiety lies, it can't be believed. Scan anxiety used to be my bug bear! I hope you find strategies that work for you & a reminder that therapy to help you find them is not weakness, it's a smart, intelligent move.
I was diagnosed on December 28th, 2020 during Covid. I was shocked how often I heard doctors say, "we don't know". I'd ask what does this mean for me? The answer, we don't know. Will the vaccines work or be available to me? Again, we don't know. Drove me scatty.
Blood counts with SLL can be misleading because it hides in tissue. I was diagnosed through a node biopsy as a result of an incidental finding on a lung CT so I have no record pre-diagnosis. My first CBC after diagnosis on Feb 7, 2021 showed WBC at 9.8 E9/L and ALC at 3.5 E9/L.
My latest from Oct 7th last year was WBC 25.6 & ALC was 18.23. This was 3 weeks post surgery though for carpal tunnel, so I expect it to be a lot lower next month when repeated.
I was in your place in July of 2021. A routine blood panel revealed higher lymphocytes and further testing showed an 11q deletion, and unmutated IGHV, negative TP53. I was so frustrated by the lack of information about MBL. At my first meeting with a specialist I was given a booklet about CLL which confused me even more because I didn’t have CLL.My white blood count was 13.4, 75%lymphocytes. The doctor gave me the statistic of the likelihood of needing treatment within 5 years was 15%. My numbers kept increasing over time and I started feeling fatigued last spring when my WBC went up to 60. At that time we started doing more frequent blood tests as it was thought I then had CLL for sure and was nearing treatment. Late May I had a rip roaring infection of unknown origin and was given antibiotics for Lyme’s disease. The antibiotics worked wonderfully. Other than that, I had only had a mild case of Covid and a couple of mild colds (fully vaccinated from Covid) during my wait and watch time. I should point out that I was a public school teacher exposed to every virus known to man during this time! After the infection my counts shot up and I started treatment with wbc of 98 and lymphocytes of 74 in August of 2024, 3 years after diagnosis of MBL.
Here is what I really want you to hear after all this personal data. There are several options for treatment for you when you need it and if you ever even need it. They are doing a lot of research in the area of CLL with new medications and other forms of treatment. I know that I will die with this disease rather than from it. And the treatment is very tolerable and effective for most. Personally, I was blessed to be involved in a clinical trial at Mayo in Rochester. My treatment is all oral (pirtobrutinib and venetoclax). The only side effect has been fatigue and a little nausea a couple of hours after taking the meds. My lymph nodes are all back to normal and both my white blood and lymphocyte counts are normal. I will be on the meds until next fall when they will run tests to determine if I need continued treatment or I can stop.
If you haven’t already and are still curious, check out the CLL society website. It is loaded with information. My best advice to you is to continue living your life and not to let this diagnosis worry you. Easier said than done, I know.
Depending on the guideline, a diagnosis of CLL typically requires a monoclonal CLL count in excess of 5x10^9 (5 billion) CLL cells per litre. So for an official diagnosis, given an earlier diagnosis of MBL, you need an immunophenotype blood test to measure the monoclonal population. Given the normal lymphocyte upper reference range limit is around 3.5 billion lymphocytes per litre, if you have a lymphocyte count that is consistently above 8.5 billion lymphocytes per litre, you are in CLL territory.
Interesting, thanks Neil! Do the clonal lymphocytes all need to come from one B cell? What if a person has let's say 3,000 clonal B cells from one malignant cell and 3,500 clonal B cells from a different malignant B cell? Is that MBL or CLL?
It's the clonal cell total and cancerous behaviour which determines if you have MBL or CLL. More than one clone is rare, but can occur. What's much more common, are a range of sub-clones originating from the parent CLL cell, which has probably since died. (CLL cells aren't immortal, they just die at a slower rate than they divide.)
Sub-clones are pretty well inevitable when you have cancer, given it's caused by an uncontrolled proliferation of body cells that have lost the ability to self destruct (apoptosis) when the inevitable DNA damage has occurred during replication of a cell's DNA. T cell surveillance also often eliminates precancerous body cells. (Keep in mind that human DNA, which is normally tightly packed into a nucleus of around 5 microns in diameter, when unravelled, stretched to around 2 meters in length and contains around 3 billion base pairs. Our cells have a range of copy verification and correction mechanisms and it's only when they fail to adequately repair DNA errors, that apoptosis should be triggered.)
Sub-clones are subject to what's termed clonal evolution, the selection of the fittest sub-clone. That's how resistance develops; sub-clones that have developed a mutation that provides a selective advantage become dominant. This is why it's possible to repeat combination therapies - it's extremely unlikely for a sub-clone to occur with resistance to two different therapies, whereas with maintenance therapies, we need to switch to another drug class to keep the CLL under control once resistance develops. Interestingly, it's possible for treatment with another drug class to eliminate what was the dominant sub-clone that developed resistance to the prior therapy, so it can be possible to revert to an earlier therapy and maintain control.
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