CLL leukemia: Just diagnosed, what can be done?

@normahorn Thats good! I have no nightsweats; im feeling well ; i would have never known about this CLL/SLL diagnosis if i didn't have a mammogram Dec 29th and this all started.

I have had night sweats since menopause so would not even think of them as a symptom.

Hi @normahorn, hah, you’re like me…we start thinking and it can be dangerous! 😅 Those extra white cells when we have a blood cancer are generally not healthy white cells so they wouldn’t really be protecting us against covid. Our best defense, when we’re immuno compromised is to keep up with our boosters.
They may not keep us from ever getting Covid but the goal is to prevent us from having serious complications from them by giving our body a ‘boost’ to make antibodies.
Have you had your Covid vax and the boosters?

Trying again.
I saw that a second bivalent Covid vaccine is nearing approval for us. That got me thinking, a dangerous thing to do. I have not had Covid, or if I did it was asymptomatic. Is it possible that our extra white blood cells, for those with stage 0 cll, protected us?

I know there is a new drug which MD Anderson uses on CLL. It is a miracle drug, in that it almost always destroys the CLL cells. Essentially, a new and great cure

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.
https://ashpublications.org/hematology/article/2020/1/1/474293/Therapeutic-development-and-current-uses-of-BCL-2
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