CLL leukemia: Just diagnosed, what can be done?

Hi @tatayababa, I can feel your anxiety growing so I hope I can help you out a little.
It really is confusing as to why some people with the same blood cancer can have symptoms while others feel nothing. A lot depends on the progression of the disease. CLL/SLL are essential the same disease with the primary location of most of the leukemic cells being the difference…either in the blood/lymph nodes or in the bone marrow. It is generally very slow to progress over years and often found randomly with a routine exam/blood work appointment.

Blood cancers start in the marrow when something triggers the immune system to run amuck with an overproduction of one portion of the blood product, whether it’s red or white blood cells, plasma or platelets. When disease is early, there may be no symptoms at all because the impact is small.
With a blood cancer there are no tumors but lymph glands can become enlarged, causing discomfort. There can be pain in joints and bones as the overabundance of blood cells crowd out the cramped chambers inside the marrow…eventually spilling out into the blood stream. Organs can become affected such as the spleen causing pain. There can be fevers, exhaustion, night sweats, etc, as the leukemic cells over take the normal production of red blood cells which carry oxygen through our body and the immune system responds to the inflammation. But again, not everyone feels any or all of these symptoms depending on the slow progression of the disease.
Not sure if I’ve given you this article previously but it’s very well done in explaining CLL/SLL
https://www.healthline.com/health/cll/chronic-lymphocytic-leukemia-symptoms
I know this is all new to you and frightening. But you have no symptoms so you are most likely very early in the game and this is a treatable condition. This isn’t the end of your story! I encourage you not to compare yourself with anyone else’s experience because every single person is different. It’s great to connect with other people with the same disease but as you’ve already seen, no two stories are the same, even with the same diagnosis.
I went through the same thing with my AML…I’ve met many people over the past 4 years with AML and only 2 have had my exact mutations and symptoms. We have to be really cautious to not speculate on those pesky what-ifs. Because most of the time what we conjure up is worse than the reality. ☺️
March 10th feels like a long way off…2 weeks from today… you’re going to get through each day because nothing has changed! You’ve had this condition for some time already…you’re just waiting for a few more answers to the puzzle. Finding the answer is a good thing! It’s the waiting that’s hard!
Are you in the heavy snow belt or are you out enjoying so fresh spring air somewhere?

In Canada lol so yes heavy snow belt ; i have a little maltese so i am out 3/4 times a day; we had a peak at spring abit ago and was out alot longer each time; these cold days not so much; you are right on all accts; i am trying to tell myself this everyday

We are currently living in Indonesia, I'll ask the doctor about the organization you suggested, thank you

I have had the initial diagnosis of CLL. The first blood test came back a few minutes ago with the doctor providing the test results saying : "Peripheral blood, flow cytometric immunophenotyping" Chronic lymphocytic leukemia, kappa light chain restricted." I'm a 73 year old woman whose family doctor sent me to the cancer guy. I have looked up all the words, but cannot figure out what they mean. My cancer doc has me scheduled for another consultation next month. Do any of your doctors wait so long to tell you what is going on with your disease? I'm in rural Oregon and haven't many choices here. I'm trying to figure out more questions for the doctor. Thank for any light you can shed on this.

Hi @aleeab, Welcome to Mayo Connect. This is a perfect support group discussion for you to join with your newly diagnosed Chronic Lymphatic Leukemia. It tends to be a slowly developing conditions that often doesn’t require any treatment in the early stages.

This particular discussion about CLL has a ton of really useful information from many of our members who also have CLL. It should give you plenty of topics to cover with your doctor at your consultation appointment.

I encourage you to read through all the initial comments posted back at the beginning. You can access those by scrolling to the top of this discussion where you’ll see a box marked “First”. That will take you back to the original replies for @kegraves regarding her husband who was newly diagnosed with CLL at that time.

Your tests results showed “Peripheral blood, flow cytometric immunophenotyping” basically that means: When you have signs and symptoms that your doctor thinks may be due to leukemia or lymphoma they will run this test. It helps diagnose and classify a blood disease.

The blood sample taken, which is your peripheral blood, showed an abnormality in your blood cells. In this case, a tendency towards CLL. This article from Mayo will help explain it a little better.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
Kappa light chain restricted~ A kappa free light chain test is a quick blood test that measures certain proteins in your blood. It’s just another test that was run on your blood to help diagnose a blood condition.

I know all of this is hitting you out of the blue. I’ve had my own experience with blood cancer, now 4 years in remission and feeling fantastic. So don’t let this diagnosis have you feeling hopeless. You may not need any treatment for some time and there are medications available to help slow the progression of the disease.

Were you feeling ill when this was discovered or was it with a routine exam?

Thank you Lori. This was a routine exam with blood work. My family doc had my blood done twice then sent me to the cancer doc. I will read your recommendations. All will help me with the questions I have to ask.

Keeping in mind when you read the conversations that not all will apply to you. We all have our own experiences but I think you’ll find some very encouraging replies from people who have had CLL for many years without any issues.
It’s all overwhelming in the beginning but it helps to speak with people who have gone down a similar path. 😊

When is your next appointment? Would you mind if I check back in with you after that, if we don’t hear from you before then?