CLL leukemia: Just diagnosed, what can be done?

Hi @majid12, aw, I’m sorry your wife’s brothers aren’t a match for her. But it’s pretty common not to have familial donors available. For that reason, there is an international bone marrow registry that should be involved in finding her a matching donor.
I don’t know what country you’re from but talk to the transplant team/oncology team to see what donor matching system they use. For me in the US, my team at Mayo Clinic used Be The Match Foundation. I was fortunate to have a donor found for me within a 3 month time span from the USA. However had one not been found nearby, Be The Match would have done an international search. Here’s the link to that origination.
https://bethematch.org/
I’m sure that your wife’s clinic must have access to a donor program where you are. It’s standard practice for any bone marrow transplant program to help find a donor. That’s their job. Often a patient will have repeat rounds of chemo to hold them in remission until a stem cell match has been located.

Personally, I received 3 rounds of chemo to hold me until I was able to have the transplant. Every 28 days I had a 7 day chemo regimen which kept me in remission while a donor was found. A friend of mine waited safely for 7 months with repeated chemo until a donor matched him. I would expect this is possible for your sweet wife too, so please stay hopeful that a donor will be located.
I’m thinking she’s completed 2 rounds of chemotherapy so far since September. How is she tolerating the chemo? I’m sure she’s tired but she should bounce back between the weeks of therapy. Has she been able to return home now?

Hi dimcdee, + 7 years with CLL and remain at level 0. Wishing you the best.

Me too! I had my LN this summer and also no treatment I had it done with breast treatment but then it came back +cll which I was diagnosed with in 2014.

I was just diagnosed with CLL through a flow test ordered from my doctor after a routine physical when my WBC was slightly elevated. I have not yet seen an oncologist since the results were just uploaded into my chart with the diagnosis. It’s been a week and I am so unbelievably anxious I can’t eat or sleep. I do not seem to have any symptoms. I have always been in good health and very active. Im just waiting for the referring doctor to call me for an appointment.

Hi @wmisyr, Chronic Lymphatic Leukemia (CLL) is generally a slowly developing blood disease. So it’s not unusual for it to be discovered quite by accident during a routine blood test when you have a physical.

Leukemia can be sneaky. You’re healthy, active, do everything right and then, wham! The good news is that your white blood count is only slightly elevated and you are at the very early point in this journey. You’ll learn more when you meet with a hematologist/oncologist. They may want a few more tests to confirm that you have CLL and the stage of your disease.

I can truly empathize with you and understand the anxiety of the unknown! My own adventure was over 3 years ago with a very aggressive leukemia called AML (acute myeloid leukemia) and I’m now in a durable remission. So I’m here to give you some encouragement that this isn’t the end of your story. ☺️ There are treatments which can help slow the progression of CLL if needed. But it might take years to get to state.
I’m going to post the link to our Mayo Clinic page on CLL to read through. It will give you a brief, but helpful understanding of how this disease develops and possible treatment plans. But I also know how reading some of these articles can put major fear in us so try not get too far ahead of the situation. Remember, this is generally very slow to develop.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
We’ve moved your original post into this active discussion on CLL where you can meet others who have recently been diagnosed or who are veterans of the condition. The conversations are in chronological order so you can start at the earliest and read through all of them. Don’t hesitate to ask questions as you go along. If you see someone you would like to reply to, click the blue reply button and a window will open for your reply. It will send a notification to the @name of that person.
One note, there is a conversation with a member within this discussion who has AML. This is a completely different form of leukemia than yours so you can skip over those replies.

I’d like to introduce you these members who have CLL so you can see you’re not alone. We’re all in this together for support and encouragement. ☺️ @kegraves @pieter1961 @carl50 @mabfp3 @sandiegostu @annieg87 @teddytwo @shirlpat.

Now, please take a deep breath, exhale slowly and try to relax. You’re going to handle this with flying colors.
Don’t hesitate to be your own advocate and call the doctor if you feel this is taking too long! Let me know if you need anything, ok?

Thank you so much for your words of encouragement ❤️

It’s my pleasure to help. I’ve been where you are and understand the value of having someone who has walked the walk. So that’s I am mentoring. ☺️ The journey doesn’t feel so lonely when you have someone walking with you.

Here’s a little blog article that was recently posted by the transplant department highlighting a young woman (and myself) whom I had the honor of helping with her bone marrow transplant journey after having AML.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
You’ve just joined another big family on Connect. 🙂
Do you have family nearby?

@loribmt First I'm so happy to hear that you are in remission!!!! Yes I'm very fortunate to have an amazing family and wonderful friends (that I have not reached out to as of yet) I'm waiting to find more information. Every little ache and pain I'm having scares me that "what if" I'm glad I logged into this site because it is helping me mentally! I do not feel alone as much as I did last week!

😊 You’re never alone here. We’re like a big ol’ coffee klatch of family members sitting around the kitchen table…in our own homes. I remember my aunties and my mom, or my mom and neighbor ladies, etc… they shared laughter, tears, anger, disappointments, illness, births, deaths…well, you get it. It’s all about encouragement, empathy and support!

One of my means to survival that I’ve shared before, I no longer deal in ‘what ifs’. That’s just wasted precious time and a mental drain. So now, it’s “If, then”. If something happens, then it’s on my radar and I’ll deal with it. It is so liberating not to worry about what could go wrong. What if everything goes right? 😉

Excellent way to look at any of these situations

Hollie