CLL leukemia: Just diagnosed, what can be done?

@pinkpocketbooks, I'd like to add my welcome. I'm so glad you connected with @nana120.

I moved your question about CLL to this existing discussion:
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I did this so you can read previous posts and connect with members like @kegraves @carl50 @rlybolt @mabfp3 @njhornung and many other members who have shared their CLL experiences.

CLL is generally a very slowly developing form of chronic leukemia. Treatment may not be needed right away. What next steps have been suggested for you?

No real changes, just regular lab work to check white blood count and listen to your body. Rest when you need it! I remember how unnerving my original diagnosis was and would tell you to take a deep breath & live your life.

Hi everyone, it has been 2 days short of a year since I found this group. So much has changed in that time. The CLL diagnosis was startling, even at level 0 and no treatment required. The blood tests keep it in my mind, but not necessarily on the top all the time. The night sweats are a pain in the backside, but I can live with them, they are not that different than the ones from hot flashes. But with all that said, now that my husband died unexpectedly from totally undiagnosed cancer and all the subsequent life changes, I find my fear of the CLL has increased. We had no children, our parents are all gone, only one surviving sibling from either of us, all far away. I am alone, except for 3 dogs. I am nearly overwhelmed and find I am so very tired all the time. I have chills then the sweats. I have lost a lot of weight, probably because I am not eating as often as when I cooked for him every day. Yes, I know I am whining. So many here are having a worse time than I. I do apologize, I haven't anyone else right now. My CLL doc will call in a few days with the results of the latest blood tests and I am worried I will have to begin treatments. I don't know how I will manage those, the nearest facility is a 4 hour, one way drive. I'm told by others, I will have to have someone with me for those. What do we do if we have no one to go with us for those? I am sorry to dump all this here, hoping someone can give me guidance and a bit of hope.

I’m so sorry you are going through this alone. My suggestion would be to locate a loving church family to support you. I do want to say that I have had oral chemo 3 times in the almost 4 decades I have had CLL and it is very manageable with minimal side affects. Blessings as you travel this road!

Oh my gosh, @aleeab, you are in a world of hurt right now and it’s ok to whine! You have a family here in Connect. I just wish we all lived closer to be able to help each other out physically…but emotionally will have to do for how.

I’m so sorry to hear about the loss of your husband. That’s incredibly difficult to try and pick up the pieces of life after that. And now you’re worried that your CLL may be resurfacing. Severe stress can also produce similar symptoms that you’re experiencing. The important thing first will be to wait for those blood results. I know how anxiety producing that can be. So, distraction is often the best way to keep yourself from filling your mind with those dreaded, ‘what if’ scenarios…those are stressors in themselves.

If your CLL is being progressive there are treatment possibilities that don’t necessarily involve infusions. This is something you’ll need to talk over with your oncologist. Is there no local hospital near you with an infusion center?

I also understand your concern if you’re having to cope with the task of traveling to and from an infusion center on your own. I know the American Cancer Society has Roads to Recovery program where cancer patients are able to get rides. https://www.cancer.org/support-programs-and-services/road-to-recovery.html

Do you have any friends who would be able to help you out? How about members from a church or a local organization that you may belong to?

I hope you get good news with the lab results! In the meantime, if the weather is great, get outside with your 3 doggos…what breed are they?

I am so sorry you are facing CLL alone! I agree with Lori - wait for your blood work results before expecting the worst case scenario. I would also recommend checking with your oncologist’s clinic to see if they have a social worker on staff. They will be able to provide you with resources you didn’t know about.

Well, I was diagnosed with CLL at 75. My white blood cells were trending up. From 13,000 to 33,000. My last white blood count was 27,000. So my WBC count went down. I have no symptoms and am getting no treatment at this point in time which is good. I will and admit along with my doctor that things can go south on my condition. WBC counts have a mind of their own. So I have this condition, do my tri-monthly blood tests unless symptoms show up I have the ability to not think about my condition.
But if symptoms do show up my doctor always tells me come in and see me immediately.

I know what you’re going through is so very difficult. This is a story for my own life that I dread. And when I hear it, it hurts my heart. But I want you to think about living every day in the moment and be present in the moment. If you worry every day, you are using up your days. The fear is not real, it’s just what you create in your mind. Fear doesn’t really exist and is just a series of “what if’s.” I want for you to think about making friends and being in a social situation where you can be with people and meet people, because you need distractions and a sense of purpose. Join a church, or find out when they have Bingo night and go! You’ll make friends.and once you do, you schedule things to do. If your day consists of staying home, but then you know you’re going out to dinner at 6, your whole day become better because you are getting ready all day, and then you’ll shower and get dressed. It’s exciting. If you confine yourself to staying in and being in a constant state of depression and stress, this is how your immune system weakens and creates more white blood cells that can easily come from stress. Please tell me you’ll try. Thanks for listening, Paul.

Thank you Lori, alive and paulb2112. Your suggestions are very kind and helpful. I am doing better after reading your responses and getting out with people around me. As I re-read what I wrote, I realized just how much I had isolated myself and as we all know, that is not good. I do appreciate your time to reply and kind words. Aleea

Good morning, Aleea. Your message is a day brightener. I’m so happy to see you’re starting to reconnect with people again. Isolation can really take its toll! Sometimes isolation creeps up on us and we’re not even aware that we’re withdrawing from people or a community. Of course, you always have your Connect family as you’ve found out with the lovely replies from @alive and @paulb2112 and @bochos. So keep us posted…we’re here for you. Fingers crossed for only good news from your doctor.
Will you let me know what you find out about your blood work?