I am new. I am here for my dearest brother who was diagnosed with CLL a few years back. His WBC is now so high that a hospital has to read the test. We don't know for sure what it is at the moment because of this process, but we think it is probably around 160,000 to 180,000 (just an estimate). The limit for the lab they were previously working with was 150,000.
My question is obviously with regards to WBC levels. What is the highest anyone has seen or experienced here? My brother seems to be just a little more tired than usual, but he also thinks this could be because we are having a record heatwave. He doesn't know positively that it has anything to do with his leukemia because he is usually more tired in the summer due to the heat (he does not have air conditioning either). He just recently got a bone marrow biopsy and a CT scan for spleen involvement, etc. We will find out more soon, but his RBC is still above the danger level.
Just trying to get an idea how high the WBC can go and someone is still fine with few serious or debilitating symptoms. Thank you!
Written by
nicesmilegal
To view profiles and participate in discussions please or .
While your brother does have a high WBC, he doesn't hold our community record. Some members have exceeded his count by 100,000 or so. Dr Thomas Kipps has reported a record CLL count of 1,400,000.
High WBC is not a reason in itself to start treatment.
Your medics will look at this in conjunction with other more troublesome symptoms such as nodes, night sweats, fatigue etc as well as how he feels generally.
My WBC was 130,000 when I started treatment in 2015 but my platelets were low around 70-80 but I could have gone on without treatment but decided that the trips to hospital every 4 weeks were ruining my social life and after putting up with these trips for 2 years I decided to start treatment at that stage alongside my medics. My other symptoms such as swollen nodes,spleen etc were not giving me much problem really. However, my bone marrow infiltration was 97% .
Wait and see what the test results say and discuss with his medics.
Because I was for around 18 months on the verge of treatment due to low platelets etc I was being monitored every 4 weeks. Each time whilst clinically near to needing treatment, we decided because I was feeling well and still playing golf etc. that my consultant continued a Watch and Wait . The fear was that treatment side effects would make me feel worse. In the end going to hospital every 4 weeks was interfering with my quality of life as I couldn’t plan long term due to constantly being near to treatment. In the end we decided together to start FCR.
Hi my WBC reached 480,000 when I needed treatment. As said before try not to focus on numbers as long as he is feeling well.
BW Jacqueline
Mine was stable at 265,000 with no lumps or bumps. Didn't seem to affect life in any way. Treatment happened when HB fell below 10 continually over a period of 8 months. This was because the lympocytes were crowding out the cells in the bone marrow, I was told. You use the words "danger level". You are not in danger you are being monitored and cared for. I think you fear treatment. Don't.
Thanks so much for the replies! That really helps so much! I will post an update soon when he gets results from his tests. This is a great group, thank you.
My wbc is 500,000 I started Imbruvica 3 1/2 months ago. The lymph nodes and spleen were slightly enlarge so my doctor felt it was time to start treatment He had been watching me for the last 12 years. A recent CAT scan showed reduction of the lymph nodes and normal spleen size. I'm now having swelling in my left foot, ankle and calf and redness. No other side effects. Has anyone else experienced this
No I did not and the nodes and spleen were only very slightly enlarged. The wbc started to go up rapidly so treatment was with imbruvica was begun 6 1/2 months ago. Since treatment I've experienced some fatigue. I used to get along on 6 hours sleep a night, now I need at least 8. My lab reports still come back as wbc 440,000+++ and I've begun oral Iron since my rbc dropped
Thanks. I was just curious. It sounds like your rapidly rising WBC was the reason for starting treatment. Your original post didn't mention this which made me wonder if your doctor had jumped the gun. Slight swelling of the spleen and lymph nodes by themselves is not an indication for treatment. It'll be interesting to see if your WBC comes down again.
Mu older bro (58) died pf leukaemia, thats what the doctor told me when he entered having a kind of seizure to the hospital...he had diabetis (insulin injection) and had neuropathy, also high blood pressure patient. His WBC were 160,000 and I saw the medical plan paid for AML studies so I guess his leukaemia was AML.
if you have more than 12,000 WBC it could indicate some infection.
Sorry to hear about your brother, I’m not an expert in Diabetis but I know it can be very conflicting with blood cancers. There are a lot of others on the site who suffer with secondary illnesses alongside Cll so they’ll have a good understanding. I recently met someone with Aml but he was fortunate enough to take one of the newer treatments and is doing well.
No. My bro was diagnosed...at the hospital after cbcs and studies extremely high... and marrow biopsy. I read all on the medical plan statements cause he died on September 16, 2017, six days after going to the hospital.
He was feeling always tired... ans i saw him holding from the walls...
He sometimes wouldnt want to go to his internal doctor or hospitals until he'd see that he couldnt breath.
I took care of my mom and dad with him (left my job, he wasnt married)...
And my mom died a month after him, my dad a month after my mom.
Mine is into the 300’s. My RBC is getting lower so I am anaemic. I have more lymph nodes everywhere and they can cause discomfort. My dr wanted to start chemo back in March but my rbc came up a little so nothing for now. I got depressed the other week (really quite low) but otherwise just tiredness. Some on the nodes hurt a bit. Especially the one on my stomach. That’s that.
Hi Guys, was reading this thread. Had a few doubts in my head so thought of jumping in. My dad, 59 has been recently diagnosed with CLL. He had no symptoms but through a general checkup saw his TLC counts were 44000. Further tests confirmed him being diagnosed with CLL. 4 months since, now his counts are 88000. The doctor, seeing the aggressive growth of the counts recommended to go for a chemoimmuno therapy. However he doesn’t have any symptoms. While consulting another doctor we were told we could w&w. But the doubt still remains whether to go for a therapy as yet or not. Please help.
I agree with the second opinion. Provided your dad has no other symptoms, watch and wait is the best option now, because his lymphocyte count may stabilise and stay fine for many years. Treating him now before he has other symptoms may not be his best option.
If his ALC is doubling in 4 months, the doctors will have checks much more often- perhaps monthly or biweekly looking for the "B" symptoms described in 4.1 of the iWCLL2018 guidelines. (see GalwayGirl's comments below).
The treatments have side effects, and some treatments depress your immune system, making you more susceptible to bacteria, virus and fungi, and some of those can be fatal if not treated successfully. So until there are signs that treating the CLL is better for him than the alternatives, they will try to wait.
For many of us the ALC rise is not a straight line- it has many weird deviations. A few patients can hit an ALC plateau and stretch out the time to first treatment, so it is an art, not science. But having a top CLL expert help you make the decision is the best advice we can provide.
Also Chemo-immunotherapy is not necessarily the best choice for many patients, interpreting the FISH and IVGH mutation status to choose the best treatment also requires a CLL expert.
Hi there, I have recently began treatment with WBC of over 300,000. I was diagnosed last December with WBC at 120,000 and it was rapidly rising every month. However we didnt start treatment until my Haemoglobin started dropping to the point I was getting bouts of severe fatigue and also my nodes were getting no problematic.
Thanks. We have decided to wait for a few more months. Though I read weight loss is also one of the symptoms. Ever since the diagnose he has been taking some medicine for sugar and the doc says it’s a result of that and nothing to do with CLL.
Just to clarify that this post is over 3 yrs old now and I’m assuming you’re using the Indian numbering system here.
‘A lakh (/læk, lɑːk/; abbreviated L; sometimes written Lac[1] or Lacs; Devanāgarī: लाख) is a unit in the Indian numbering system equal to one hundred thousand (100,000).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ibrutinib, opposite effect.
How did they treat your low platelet count? What if low platelets are more of an issue than high white blood cells?
TPLL - Experience with venetoclax/similar treatment
