Anyone have chronic lymphocytic leukemia (CLL)?

My doctor just told me yesterday that I have CLL, Stage 0. This came after months of bizarre lab results, and an abdominal ultrasound on which everything was "unremarkable," fortunately. I'm 64, and pretty much never get sick (even the last time I got Covid, I only found out because my son had it so I took my temp. and it was slightly high). I'm waiting to be scheduled for a bone marrow biopsy.

I've been working out regularly for about a year, and this gives me even more incentive because I want to be strong and not have to rely on others to do stuff for me if this progresses. My diet is very healthy. My doctor said I shouldn't drink alcohol at all, but I think I'll stick with one glass of wine a day, because it's something I enjoy, and I've read that moderate (1 drink a day for women) drinking is more or less okay. I'm not ready to live like a monk yet!

My only concern is some skin issues--rashes on my hands, arms, and chest, and what appear to be petechiae on my belly and legs. I'm seeing a dermatologist next week.

Oddly, I'm not really freaked out. I just don't want my son (he's 26 and we're close) to be worried.

So that was my introduction. 🙂 I'll probably be "around" here to ask questions and chat with others going through similar things.

Bone marrow biopsies are pretty rare these days; FISH test and other blood work gives sufficient information for a treatment plan, which is often simply watching for disease progression. Hopefully you are getting competent medical advice. If it's available to you, make an appointment with a CLL expert. Check out the CLL Society website, where many are listed.

Thanks for responding. My options are somewhat limited for oncologists in my area, but my doctor seems to have an excellent reputation and is very thorough.

From what I can tell, a few things might be prompting her to do the biopsy--the petechiae and weird rashes I've been getting since around the time I initially got bloodwork done, as well as anemia which has since resolved, and some bone joint pain, which hasn't been bad lately but was excruciating a few months ago (a big part of the reason I went to my GP in the first place). Perhaps she wants to rule out other infections or abnormalities?

The skin stuff in particular has just been weirding me out. I do have an appt. with a dermatologist (as my doctor recommended) next week. I do worry about something like leukemia cutis or something, but I'm still just trying to work through everything. If the biopsy will help to clarify anything, I have no problem having one.

Hi @nancybev

My kids were also concerned until I got us all up to speed. There is a ton of information to learn, but fortunately so many great & reliable resources available.

I was dx'd May'24 @ 64. I went on drugs (Zanubrutinib) immediately. Both Mayo and UMN Med Center did biopsies, FISH, along with too many other tests to keep track of. As you have learned, or will hopefully soon learn, for most people it's something to live with... though unfortunately some people are impacted to a much greater degree.

There is a lot of support right here & out there for CLL and its variants. Staying healthy is a great idea, so kudoos for that! Happy to answer any questions if you have them.

Thank you! I've been reading research papers, articles, etc. for about a week straight now, and with everything I read I just get more confused, for the most part. I think I know my labwork results by heart now...

@minnesotajim 's response about the bone marrow biopsy really has me wondering why my doctor (a) insisted that I have CLL Stage 0 and not low-count MBL, although pretty much everything I've read says that it's MBL, and that there is no need to do a bone marrow biopsy. She was warning me about things like having to go to a hospital if I get Covid, etc.

Her first assumption, before the test results, was that I had MDS, probably caused by too much alcohol (I drink more than I should, but not THAT much!). But, since apparently MBL is NOT caused by alcohol, maybe it threw her off.

I also have Celiac, which complicates things even more (I'm usually very careful about being GF).

I'm not really worried, but just getting tired of not really knowing what's going on, and doing so much reading on my own!

Thanks again for your reply. 🙂

By the way, why did you start meds right away? That's unusual too, isn't it?

Hi @nancybev,

My test results (below) from when I was first dx'd Feb-May'24 - it was several months before they were pretty confident of what it was. My Mayo doc classified it as stage 4. I had a few very small, but still enlarged lymph nodes in my armpits/neck, some lethargy, and a slightly swollen spleen. However, I never night sweats or other life-impacting symptoms. So, I had CLL in my spleen, lymph nodes, and (as determined from the biopsy) in my bone marrow.

Many people end up on watch & wait, sometimes for many yrs. Being ambitious, I didn't want to wait ;-). I can't say how unusual it is in the context of a disease that is itself pretty rare. For me, it was just caught at a physical, not because I noticed anything. I was, and am, otherwise healthy. Indeed, more susceptible to catching bugs however. I'm still trying to get comfortable with wearing masks in crowds.

IgG 431
IgM 2320
IgA 18
Platelets 99
Absolute Lymphocytes 45
WM-specific Factors
M Protein MK 1.33(May)
M Protein ML .318(May)
Kappa FLC 12
Leukocytes 47.5

Yes a close relative just diagnosed. No symptoms, just weird blood test, and more tests confirmed. In a wait and watch mode now. Looks promising.

About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention. I was already on water pills but still retaining water. The doctors tried a few different medications but was getting worse. I switched doctors a few times and looked at my organs a few times. Last year my new doctor suggested that I see a hemotaligist and they discovered that I had CLL. I'm at stage zero but the fatigue comes in waves now and my empedima is flaring up like crazy. I've just started taking lymphatic drainage herbal tonic and it's working draining the water from my feet, ankles, and legs. It's also improving my energy. Unfortunately I can no longer work as electrician because of my condition. At 55 I can't collect social security, so I'm now struggling with my health and finances. I'm hopeful that I'll be able to manage my illness so that I can at least perform normal tasks again.

First, I appreciate everything everyone is going through but I'm new to this so I welcome any information you guys have. I only found (bc I requested them) my records from surgery that I had(have?) leukocytosis. I've been having severe pain in my groin and now have a (for like a better word) questionable enlarged lymph node. I'm scheduled for more tests. I'm looking for anyone who's been in limbo for a diagnosis. It's been almost a year and all I want to do is sleep. No energy and these cold sweats are endless. I'm 60, and have had other health issues for the past 5 years. I'm hoping someone out there has had a similar experience and would love to know the outcome. Thank you.