CLL leukemia: Just diagnosed, what can be done?

I can sure relate to that feeling of being betrayed by your body or DNA. Believing I did everything possible to avoid cancer it never occurred to me to consider a blood cancer! But I hit the jackpot with Acute Myeloid Leukemia. In my case it was aggressive and the odds weren’t in my favor. Here I am, 4 years later, in an enduring remission and living my best second life!
I want to encourage you to not throw in towel and feel this is a “get your affairs in order” moment…though it is always a good point to not leave that until it’s too late. But this isn’t a ‘too late’ moment. ☺️

Should you require treatments, CLL has a number of very promising options which help slow the progression of the disease in early stages and to help put a patient into remission.
As for finding the cause, sometimes there seems to be no rhyme or reason to these blood cancers. In my case it was a random event. All of my oncologist hematologists have said the same thing, that I’d drive myself to distraction trying to determine a cause. It can be something as nebulous as a stray gamma ray that set things in action. ‘Stuff happens”

So, when a cancer like this happens, the best thing is to get the news, face it head on and deal with events as they happen. Worrying about ‘what if’s’ saps strength and robs you of precious time. I’m a firm believer in “if-then”. If something happens then I’ll deal with it. That has helped keep anxiety to a minimum and allowed all my treatments to work for me. They will for you too!

You were in the army, so you have an inner strength that you learned to tap into all the years you served. If those skills are rusty, I’m betting they’ll have muscle memory and rise to the occasion when called upon. You’re going to get through this and if you need a perky, annoying cheerleader, I’m your person!

Now you need a distraction until the 27th…how’s your sock drawer looking? 😉

I have a different feeling about wanting to know what caused me to get cll. Often people on this forum and in the support groups I have attended seem to have a lack of curiosity about what caused it. If it is an environmental cause, I would want to know and I would think others would to. I feel it is dismissive for doctors and others to tell people don't worry or think about what caused it. It could be a "fluke" etc.

Three of my former coworkers, all male, have/had multiple myeloma while I, a female, have cll. Coincidence? One has died, another has had a stem cell transplant and is doing well, while the third has other major health issues. I know two were not in the Vietnam war so it can not be blamed on agent orange. Are there other former coworkers affected that we do not know about!

Hi. I was diagnosed 2 years ago. No treatment yet. It’s stage 4 - all 4 quadrants. Waiting til lymph nodes are 10mm. All my blood work is good as of Tuesday’s visit. I have my 6 month ct scan coming up soon as well. I can’t help but feel it’s environment related as well and/or Covid vaccines. But I have no clue. No symptoms of any kind though. Just stressed over it. I do feel a sense of dismissiveness as well from all doctors.

Hello everyone. I was diagnosed Nov. 2021 after a routine exam. No symptoms. What a shock that was. That was before getting any Covid vaccinations.
I think it's only natural to try to answer the "Why, what did I do wrong?" question. My research indicates CLL is caused by either a genetic predisposition (parents who had cll) or environmental influences (exposure to benzene, for example). Benzene is present in everyday products i.e. cosmetics, nail polish, some household aerosols, hairsprays- basically, it's used as a propellant in aerosols. So, one must consider exhaust, gasoline & diesel...as a child, car exhaust always made me feel so ill. It still does. Add to this stresses like job, family, grieving 7 members over 3 years, then covid fears and isolation...So, I think exposures over a lifetime added up to cll for me. It all damages our genetic structure. Our B cells. Part of our white cells. Our white cells fight infection. Once one cell goes unchecked by our immune system, the duplication of these cells begins. Cancer hides itself from our immune system. That's how it duplicates itself. These cells are damaged however, so they don't fight infection anymore. They just take up space until they crowd out our healthy cells. Fortunately, we now have BTK inhibitors ( Ibutinib, Acalabutinib, Zanubrutinib) and BCL2 ( Venetoclax) Ptki's, and numerous newer drugs in these classes and more in development in studies. Thankfully, our cll grows slowly. There is great hope that we will live normal lifespans. So I'm focusing on a healthy lifestyle and learning all I can about this to be my own advocate for the best care I can find. This is watch and wait or active monitoring.

@5gk I feel the same ; always thinking i have done the right thing over my 62 years; eating well; exercising; etc...i was diagnised with CLL/SLL Jan 2023; discovered during a mammogram; CT; PET: MRI scans; blood work; omg; such a worry; what does all 4 quadrants mean?

If you're speaking about abdominal studies, imagine yours as being divided in 4 sections i.e., upper right and left and right and left lower sections.

I’m actually CLL lymphoma not leukemia but 4 quadrants is both armpits both sides groin and neck. Was discovered 8 weeks after second vaccine during a mammogram. Previous had no lumps anywhere but swollen up after vaccines.

@elissams143 heres my concern; i was told by hematologist CLL and SLL are the same thing? i don't understand how but thats what i was told; according to quadrants; i have both armpits involved; groin areas clear. im wondering if the vaccines could have caused this?

That’s exactly my concern as well. No one seems to have answers for it - yet. All too new. Are you in a wait and see as well? Did you have a biopsy done? I was told it could be 5 years til I may need treatment.