Might have CLL: Does it come on fast?

I was diagnosed about 15 years ago. My Hemo/onco Doc initially confirmed CLL with B-lympho markers, etc. We have only monitored the situation (no treatments). For the longest time, my WBC was quite elevated. About 4 years ago, it has been running very normal, although the specific B-lympho markers indicate about 30% are neoplastic (abnormal). So, CLL is still very much there, but quite under control. I am one of the small percent that fall into this category. I am very blessed (so far!!!). I could have a change for the worse any time. But I will take what I have now and go with it! Ron

I have had CLL since my diagnosis in 2017. Since then, I see my oncologist just once a year plus he receives the test results from my twice a year visits with my general practitioner. This may seem like a pretty laid-back approach but up to now my white blood cell count has been pretty stable.

Go with the BMB as it will clear your mind if what if. I demanded sedation for the procedure. All came out ok. My hematologist also did body scans. with to autoimmune diseases now, just live your life as normal as you can!! 🌸

I was diagnosed in 2021 and my hematologist/oncologist guessed I had probably had it for at least 2-3 years before diagnosis. The FISH (Fluorescence in situ hybridization) and Flow Cytometry can tell you if it is CLL without a biopsy (both are blood tests). I had rising levels of lymphocytes over many years, ran from 4000-7000 for probably 8 years. I had them retest after a month when I had high lymphocytes right before my diagnosis as there are other cause such as infection and illness that can cause high white counts. I am still in the watchful waiting period, have blood drawn every three months and had some CT scans and a PET/CT scan and some lymph node biopsies as needed. All the lymph node biopsies have come back as CLL?SLL. I think the tests I mentioned, FISH and Flow Cytometry are important at diagnosis so you know what you are dealing with. I have mutated IGHV and a single 13Q deletion., both good prognosticators. My doc and PA are pushing me to start Acalabrutnib but I want to wait as I have some swollen lymph nodes but not to the level of "Bulky". I don't have B symptoms. There are some excellent lectures on youtube about the ever-changing, with much hope, landscape of CLL If you are diagnosed, find out as much as you can about the disease and your options. Don't feel rushed to treat as the studies are still in the starting medication early does not improve survival camp. That could change. I am very thankful to have CLL as it is indolent and chronic, two words I never associated with being positive things until this diagnosis. All the best!

I wanted to explain more about how survival has not been associated with starting treatment early. Once you have a treatment, you can become immune to that treatment and takes it off the table. Each treatment tends to eventually cause some kind of resistance in the form of mutations. With the BTK inhibitors, you take them until they stop working or side effects cause treatment to stop. Other meds such as Venetoclax are for a fixed duration. BTK inhibitors about double the risk of Richter's Transformation, a low risk about 5% lifetime risk goes up to 10% lifetime risk with treatment. Some mutations found by FISH need treatment right away, many are watchful waiting as the first step. But if one doesn't need treatment, every year improved meds and combinations are coming out that may better treat one and with no treatment-induced mutation occur. I have told my doctor I do not want treatment until there is a REAL reason to treat. Others feel differently!

It seems to me that part of the problem stems from the mindset pushed for getting early detection so the cancer can be treated at an early stage. We have a cancer that does not fit in that mindset. Having a chromosome 13 deletion, I would be happy if I never reached the point where treatment would be warranted.

I should have mentioned that I am at stage 0.

I was diagnosed in 2008. I had high lymphocytes identified with a routine CBC, with CLL confirmed by Fish and flow cytometry. Since then I have seen my hematologist and had blood tests every six months. In the past three years I have had two CT scans watching the size of lymph nodes. My lymphocyte count seems to have stabilized in the 80,000, but in the past has been over 100,000. I have had no treatments. In the last 18 months I have seen my hematologist and had blood work done every three months. They are watching my platelets and hemoglobin almost more than my lymphocytes. My platelets dipped to near 100, but have been trending up the past three visits, recently at 124. There was a suggestion I should strongly consider treatments if platelets fall below 100.
Other than elevated lymph node size, which are barely visible to the naked eye, I essentially have no symptoms which impact my life style. I run 5 miles numerous times a week. I am 68. Based upon doctor consultations and what I have read I am in no hurry to start treatment. Every year there seem to be new discoveries. As there is no evidence that early treatment is better, I am comfortable being in watch and wait.

Good morning @spoolly. I see you’ve been a member for a while but this is your first time posting! Thank you for sharing your experience with CLL. Stories like yours really help newly diagnosed members get a positive perspective about living a normal life after receiving a diagnosis of CLL.
You’re enjoying your days to the fullest and not just waiting for the proverbial ‘other shoe to drop’.

It’s really reassuring that your health has been relatively stable since you were diagnosed in 2008. I hope that you’ll share more with us in the future. You never know how many people you’re helping by showing that you can have a normalcy after a diagnosis of CLL. What other activities do you enjoy besides running?

In June I had Cyto and Fish both indicate CLL. Also had biopsies - on on lyph node. I have "numerous" swollen lymph nodes, mostly on my neck. I have been losing weight - muscle in hips and legs. Really tired in heat. Otherwise energy seem fairly good. I am waiting on IGHV test which apparently indicates mutated or unmutated cells. I am not sure but I believe the mutate cells result is the better more controllable type. I'm still trying to process and realize I have this and what does it means for the future for me, my wife and children. I mean, "do I have a terminal disease?" This is hard to process.