Hi there everyone. I'm a 75 year old female from the Seattle, WA. area looking for info, advice and whatever else you can share me. So although I have not been officially diagnosed with anything yet my new PCP has recommended that I be tested to check for CLL or CML due to an elevated WBC that has been creeping up slowly for the last 2.5-3 years. My last complete blood count in late December showed my WBC at 19.1, (up from around 17.1 in October when I had a pacemaker put in due to long time A fib). My lymphocytes were 7.98, monocytes 2.28 and neutrophils 7.79. Everything else was normal except my blood sugar was a bit high. I have no symptoms of either CLL or CML. At her advice I have an appointment with a hematologist/oncologist at Seattle's Fred Hutch Cancer Center tomorrow 2/4/25. I don't really know what to expect in the case of tests, although a flow cytometry was suggestion based on a blood smear in October that showed atypical blood cells. I've been really stressed out waiting since December for this appointment for fear that I will be diagnosed with something serious. I guess my question here is, on average how soon should I expect test results to be available, are there some tests I should make sure I get and is it likely I will need additional tests before a firm confirmation can be given? I realize things can vary from one lab, clinic, hospital, etc. I have put a number of plans on hold until I know for sure what's wrong with me and I'm extra nervous that if I do have either CLL or CML along with my 10 years confirmed A-fib that any treatments I may need might not "play" well with my A-fib and A-fib meds. Needless to say I'm a wreck dreading tomorrow but also need to know what's up. Thanks for your thoughts and hope I'm not over stepping my bounds by positing here before being diagnosed with something.
New here but have questions.: Hi there everyone... - CLL Support
New here but have questions.
NancyJ4, Just a CLL patient here... but FLOW cytometry is the blood test that confirms a CLL diagnosis. My results came back in about a week. The other tests leading up to the FLOW just give the doctor a hint of a possible Non-Hodgkins-Lymphoma as a reason for the rising WBC (which CLL technically is). My disease acts more like Small Lymphocytic Lymphoma than CLL, but they are just different presentations of the same disease. I know it's hard to hear cancer and I truly hope you don't have it, but many of us live long and productive, healthy lives in a Watch & Wait (active surveillance) period before even needing treatment. If you do need treatment the BTK inhibitor drugs do have some aFib challenges, but the newer generations are better tolerated and the doctors seem to understand how to mitigate those issues. Others on here will likely weigh in with far more pertinent details, but try not to panic. This disease can largely be treated successfully for many years and most people die with it not from it.
There are some CLL experts at Fred Hutch. If you do have CLL ask to see a CLL specialist. That's the best advice I can offer.
Expertise makes a difference.
Best to you and I hope your test is negative! Bigfoot
Thanks so much, that is helpful. If I do have CLL I will ask about a specialist. Tomorrow I'll be going to one of the local Fred Hutch centers closer to me, not the main one in Seattle. Hopefully there will be a specialist where I will be going as Seattle is a pain to get to from where I live. Thanks again for your thoughtful message.
Dr. Shadman is a really well respected expert at Fred Hutch. Likely at the main campus, but you probably just need visits quarterly or so. I'm sure he can coordinate with local offices. Good luck to you.
Wonderful, thanks for that info.
Yes, Dr. Mazyar Shadman was the CLL specialist with whom I had my consultation, when it was decided here (in Hawaii) that I should being to take Zanubrutinib. Dr. Shadman is extremely knowledgeable, and very reassuring. My appointment with him was a virtual one, and he was recommended by my oncologist here. Best wishes to you!
I think you meant Dr. Jeff Sharman. You will find him in numerous videos about CLL with other experts. healthtree.org/cll/communit...
Hi Nancy,
Thanks for giving us good background of your situation. Just to add to BigfootT 's advice, the fact that your WBC has been creeping up over 3 yrs (not soaring) suggests that, if you do have CLL, it doesn't sound like an aggressive version. That's already good news. CLL is a very heterogenous disease—there are no pure breeds, we're all just mutts. As BigfootT said, once you get the flow cytometry test results, then you'll know if you even have CLL/SLL. If it turns out you do, then there'll be lots more tests to figure out what version you've got.
Fred Hutch is definitely a great place to go. It sounds like tomorrow is just a lab draw. So pls try to take a breath, live in the moment, and cross each bridge as it comes. Easy to say, I know. But IMO, it really is easier on mental health.
If you do end up with a CLL diagnosis (dx) here's a link to check out from them. fredhutch.org/en/diseases/c...
There are so many resources here on HU, Fred Hutch, as well as many other sites like CLLsociety.org etc. You've already found great resources, are obviously smart, and now it's just a matter of taking it one step at a time.
Holding you in my thoughts from just down the road in Oregon.
Thank you neurodervish. I appreciate your thoughts and kind words.
Hi Nancy,
I’ve been seeing Dr. Shadman at the main Fred Hutch center for 7 years. I was diagnosed in 2017, had treatment in 2018 and again starting in 2023. I am nearing the end of a two year study of combining Venetoclax and Acalabrutinib, and I’m feeling really good. There are so many new drugs that don’t have as bad side effects as what was available when I was diagnosed. As BigfootT said, Dr. Shadman is excellent and hopefully whomever you see at a satellite center will be able to confer with him. If you need to go to the main campus, FH has two residences where out of town patients can stay and they free shuttles running back and forth all day.
There are so many people on this site who are far more knowledgeable than I am. But in my experience, the cytometry test is the one which can tell if you have CLL. Then CT scans are then used to measure your lymph nodes which, in my case, was the decider as to when to start treatment. The one thing I would warn you about is that often your test results are posted on the patient portal before you see the doctor or NP to explain them to you. I learned not to look at them until someone explained the results…it saves me a lot of unnecessary stress.
CLL is cancer but try not to be too frightened if that’s what you have. My cousin also had CLL. She lived with it for over 20 years, dying in her late 80s from an unrelated lung condition. I hope you don’t have CLL but if you do, try to concentrate on the things you can do to stay as healthy as possible. Best wishes.
Hi NancyI'm 73 and I have been treating for CLL since September 2024 at Fred Hutch in Seattle. I live south of Seattle. I was followed by hematology there for a year due to high white blood cells and low platelets. Flow cytometry was ordered by my PCP and it showed a high anount of bad cancer white cells, leukocytes. Then I developed lymph nodes in my neck and was sent over to the lymphoma dept. I had an initial appt with Dr Ujjani, who asked me a lot of questions. I really had no symptoms of CLL except for lymph nodes, and felt great. CT scans of my abdomen, chest, and neck were ordered, as were blood tests. I didn't get an official diagnosis at that appt, but I did a few weeks later at my next appt with the dr. Treatment plans were recommended at that time also. It was all shocking, but I am 6 months out and having my last infusion of obinutuzumab tomorrow. Will continue on venetoclax, an oral pill, til August. The disease is manageable, and we learn to live with it. It has not interfered with my life as much as I thought it would. I felt great much of the time. You will be good. Fred Hutch is a great place to receive treatment.
Hi again,
Thanks to those who responded to my post a couple of days ago. Although my new Fred Hutch doctor has not reported back to me yet I have received all the tests she requested (they took 8 tubes of blood from me) and the Flow Cytometry test does show CLL. It did mention SLL too but leaned much more towards the CLL. Needless to say I'm bummed and somewhat scared about things to come. I will of course be asking the doctor a lot of questions but since I don't know for sure how soon she'll be in touch I wanted to ask about a couple of things here from those of you who might be in the know. Since I have A-fib, I'm on low dose aspirin once EOD, sometimes every day but might eventually need to switch to Eliquis (a true blood thinner) are either of those things not a good idea with CLL? What about the occasional Tylenol ? I have periodic hip issues (will need a replacement at some point) and I still have some discomfort from my recent pacemaker surgery. I'm not a pill popper and generally only take OTC things when absolutely necessary. Also, and maybe this is silly question but is there anything I should avoid or perhaps add to my diet? Thanks in advance.
It's always scary to get a significant health diagnosis, especially ones with the "cancer" thing.
Let your cardiologist know about the CLL, and the hem-onc about the A-fib, along with any meds. They will figure it out. You need to manage the heart condition, A-fib could put you in the hospital more readily than something CLL related at this point in time. I say this because your oncology group hasn't rushed you in; if something looked "really bad" the lab would have flagged it & you would have gotten a call to be seen.
Tylenol does not affect CLL. Re:diet, eat as healthily as you can, get out of bed/walk or otherwise exercise as you are able. Since you now know your immunity is impaired, you may no longer recover from any kind of infection as fast as you used to. So you may want to consider seeing a doc sooner rather than later, for colds that don't seem to clear up, or skin infections not going away, or sinus problems, whatever.
There are no silly questions. Don't hesitate to ask. Read up the various Pinned Posts here, to learn more about this disease. Better educated patients involved in their care, have better outcomes. This is true for most all disease states, not just CLL.
CLL /SLL are the same disease with different presentations. CLL is a leukemia and SLL a lymphoma, but while confusing they are synonymous. Sometimes the disease switches presentations and doctors can't explain why that happens. For the most part regardless of which presentation you have they generally refer to it as CLL. It's just easier......even though I have SLL.
All the best, Bigfoot ( a former Whidbey Island guy)
Recently diagnosed, WBC numbers stable but RBC/HGB trending down
CLL & possible hyperparathyroidism
New member - Maggie 
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