I think one thing that is important in making decisions is knowing all you can about WHICH specific cancer you have. You need the doctor not to talk in broad terms about CLL. There are many forms and they are treated differently. I search websites of proven hospitals such as Mayo Clinic, MD Anderson Cancer Center and American Cancer Society has excellent articled. This information is from them. Start with finding your EXACT type of CLL. Then google it and find link after link to learn all you can. FYI: One kind of CLL grows very slowly. So it may take a long time before the patient needs treatment.
The other kind of CLL grows faster and is a more serious disease.
The leukemia cells from these 2 types look alike, but lab tests can tell the difference between them. The tests look for proteins called ZAP-70 and CD38. If the CLL cells have low amounts of these proteins, the leukemia tends to grow more slowly and have better long-term outcomes.

Rare forms of lymphocytic leukemia

The common form of CLL starts in B lymphocytes. But there are some rare types of leukemia that share some features with CLL.

Prolymphocytic leukemia (PLL): In this type of leukemia the cancer cells are a lot like normal cells called prolymphocytes. These are immature forms of B lymphocytes (B-PLL) or T lymphocytes (T-PLL). Both B-PLL and T-PLL tend to grow and spread faster than the usual type of CLL. Most people with it will respond to some form of treatment, but over time they tend to relapse (the cancer comes back). PLL may develop in someone who already has CLL (in which case it tends to be more aggressive), but it can also occur in people who have never had CLL.

Large granular lymphocyte (LGL) leukemia: This is another rare form of chronic leukemia. The cancer cells are large and have features of either T lymphocytes or another type of lymphocyte called natural killer (NK) cells. Most LGL leukemias are slow-growing, but a small number are more aggressive (they grow and spread quickly). Drugs that suppress the immune system may help, but the aggressive types are very hard to treat.

Hairy cell leukemia (HCL): This is rare cancer of the lymphocytes that tends to progress slowly. The cancer cells are a type of B lymphocyte but they're different from those seen in CLL. There are also important differences in symptoms and treatment. This type of leukemia gets its name from the way the cells look under the microscope -- they have fine projections on their surface that make them look "hairy." Treatment for HCL can work very well.

Hello Debra5,

I was diagnosed with CLL/SLL in 2019 after a mammogram showed a growth in my armpit that was not there sixmonths prior. I am also a breast cancer survivor.

Initially I was told we would do the wait and see but after additional tests, it was decided I would receive radiation. I completed that with no major issues and I was given med to treat my anemia. I am told I am currently in remission.

Hi Debra5 I have added you to my team..I had swollen lymph nodes just like you iam taking Brukinsa my lymph nodes go very large I could barely turn my head I had a some difficulty swallowing too that’s when my tx started..first Calquence that caused a rash then Imbruvica that made my BP go up and I had an episode of afib so now the Brukinsa so far ok 19:days today..everyone is so nice and helpful here..hope you have a happy Easter

My swollen lymph nodes was in my right underarm. I was given 13 weeks of radiation, now in remission for 2 years.

Pat. I thought my neck hurting and hard to turn was just me!! I’m am Relieved to know that it is not. And that the swollen lymph nodes are a cause of us.