CLL leukemia: Just diagnosed, what can be done?

My husband and I were also totally caught off guard by his diagnosis! We are both 72. We both just had routine bloodwork done at our yearly physical by our primary care physician last August at Mass General Hospital in Boston and my husband’s blood work came back as showing CLL! We were floored!!! The primary sent him to a specialist at MGH who only deals with this diagnosis. He has been very nice and staying on top of things for my husband. We have had two visits so far and he continues to be labeled at *0*. We will go in again in March for more bloodwork. From what was explained to us, this is a slow growing leukemia in older people and it may stay a *0* for a long time. I guess that they have very good treatments for it if the blood numbers give them concern. This was all news to us with this diagnosis. Wishing you all the best. Be sure to ask all of the questions that you need to ask! MaryAnn from Boston

Do you have any symptoms with your CLL? I was wondering because I am confused. You stated you are doing well for 5 years...so you don't have any symptoms?
I was recently diagnosed with CLL and my lymphocytes are only 7500 but I am soooo tired and I get rashes and headaches, bruises too. How can this be when most of complete blood counts are fine?

Hello I was diagnosed 3.5 years ago. I also get bruises easily and rashes when my skin is dry. My counts are also ok.

I have just got the diagnosis CLL/SLL and i have no symptoms other than swollen lymph nodes found Dec/22; feeling fine nothing else; had a CT scan Tuesday waiting for all results March 10; so confusing how some get symptoms and some dont; so confusing

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

Truly, I’ve been where you are with this medical hoopla and it takes all we have some days to keep our head above water! It’s important for us to keep positive. Lol. Easier said, than done…I know. But it’s doable. 😊
I’m from Wisconsin so I’m no stranger to those crazy winters either! I love winter but my husband doesn’t. So we spend parts of the winter in Florida. Thought I’d not be happy here but I have to admit, it didn’t take a lot of arm twisting to get me down here! Loving carefree walking without slipping on ice! We’re heading back home soon though…reality awaits. 😂

@raremiracle2 thanks for the hug! how are you doing?

Hello @majid12 I haven’t heard from you in a very long time. How is your wife doing? Was she able to find a donor and have a bone marrow transplant?

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.