CLL leukemia: Just diagnosed, what can be done?

Hi @mark3240 That’s a pretty remarkable statement. Do you know the name of the drug?

The best way to answer is to direct you to this video of Dr. William Weirda, Deputy Chair, Leukemia Section, MD Anderson.

In addition, during an appointment with a Mayo oncologist two weeks ago, I mentioned the exceptional results and outcomes of the new drugs, and he confirmed that they are highly effective at achieving remission, and in many cases regarding the patient as cured.

Here is the video....it is technical, but make sure you start the playing at the very beginning, as YouTube here starts, oddly, a few minutes in.

P.S. I believe both Mayo and MD Anderson are very current in their knowledge and use of these new drugs.

Thank you for sharing the video. The drugs you mentioned are a great advancement for treating CLL and small lymphocytic lymphoma. (And other forms of blood cancers). In some cases they allow patients to forego rigorous chemotherapy treatments. These are more targeted and inhibit the growth of specific cells.

Venetoclax, I think is the newer drug you’re referring to, though it has been out for a few years. It does have the ability to put a patient in a deep remission according to the information on the website. But we have to be cautious when using the cure when dealing with blood cancers.

Here’s a little more about the action behind the Venetoclax.

Zanubrutinib (Brukinsa) was just released this year by the FDA and is another newer drug that did well in the trials as a BTK inhibitor. Bruton Tyrosine Kinase (BTK) is a crucial part of the B-cell receptor signaling pathway. Certain B-cell leukemias and lymphomas use B-cell receptor signaling for growth and survival so when it’s blocked it can trigger the death of cancer cells.
There are several members in our forum who are taking Brukinsa. So I hope they will continue to share their journeys here. All of these new breakthrough drugs, years of research and science behind it really give hope to those of us who have a blood cancer.

Were you diagnosed with CLL? Are you currently in a treatment plan?

I have phone appointment on the 27th. The second blood test (IGH SOMATIC HYPERMUTATION ANALYSIS, B-CELL CHRONIC LYMPHOCYTIC LEUKEM) showed "A mutated IGH V rearrangement was identified. The level of mutation identified was 5.1%.
The IGH V allele identified was 3-53*01.".
I am looking forward to the phone call to find out what that means to me and my health. I never thought I would regret not being a lot smarter so I could understand what all these words mean. Even looking them up in medical dictionaries don't really help understand them in relation to what is happening in my body. After all those years in the Army, meeting physical standards, eating and exercising to stay healthy, I feel betrayed by my DNA. So I wait another week to find out if I have a "watch and wait" disease, one that needs treatment "right damn now" or "make sure your will and affairs are in order, you'll be dead by the end of the year" . I can't even figure out what might have caused the problem to start. It is just so frustrating. Sorry to be so negative, but no one around me has anything upbeat and it is beginning to get to me. Aleeab

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.