Have I crossed watch and wait, stage?

[shallovercome]

I was diagnosed with a high abnormal WBC count of 38500 on October 17, 2019. I checked with my local oncologist who said there was nothing to worry about. He asked me to go for a CBC test every 6 months. Last week for around three days I had a fever ranging from 38 to 38.4 degrees C. It remitted on its own and I went for a routine CBC on October 10, 2020, roughly after 6 months. and the numbers are shocking. My WBC has shot up to 1,11,000 while my platelet count has slipped to 96 (it was 236,000 in October 2017). My Hemoglobin is at 10.8 (it was 11.3 last October). Am visiting my oncologist again tomorrow. My weight was 80 kgs last October and it has come down to 78 in six months' time. Otherwise, I feel healthy and do not have fatigue. Have I reached a state where the watch and wait is over.?

[AussieNeil Administrator]

I presume you meant 96,000 for your platelet count? The use of lakh units (units of 100,000) is confusing for non-Indians. If you express your WBC in 1,000 units, (a more accurate measure is your Absolute Lymphocyte Count), has it changed from 38.5 to 111 in a year?

I don't think your time in watch and wait is necessarily over, but more frequent blood tests would help better understand your trends. When are you having your next blood test?

Neil

[shallovercome in reply to AussieNeil]

Thank you for your prompt reply. My total white blood count - WBC has moved up 38500 to 112,000 in around six months' time. My Absolute Lymphocyte Count is at 99%, actual numbers are not available. My platelet count has dropped from 235,000 to 96,000, again in six months. My Hemoglobin count has also slipped from 11.4 to 10.8 in six months' time again. My RBC count has moved up to 3.79 Mio from 3.69 Mio over a six-month period. My weight has dropped from 80 kgs to 78 kgs over the past six months. I am visiting my oncologist tomorrow. Do you think my days are numbered?

[SofiaDeo in reply to shallovercome]

It's not your total white blood count, it's your absolute lymphocyte count that is monitored more closely. You could have an increase in monocytes and neutrophils, and your total white count will go up. Monocyte cell type is largely irrelevant for CLL monitoring. It's the trend of your lymphocytes, plus the status of red blood cells, neutrophils, and platelets plus any other symptoms and status of other organ systems that weigh in the most on determining if it is time to treat. Percentages generally are not used unless the lab report doesn't calculate the Absolute Lymphocyte Count for you.

If you were feeling unwell & had a fever, it is likely that some of the white cell count rise is due to that. Were you vaccinated recently? Some people have reported temporary rises in their counts after a vaccine stimulates their immune system. But a 10-fold increase in overall white cells I am guessing also includes a large number of lymphocytes. As cajunjeff noted, as hemoglobin drops we can start to feel worse from the anemia. And since a number of studies show a high correlation between blood levels of CLL lymphocytes and degree of bone marrow infiltration, it may be time to stop the CLL growth before your bone marrow loses the ability to continue to make red blood cells, platelets, neutrophils, etc. even if you feel OK.

[AussieNeil Administrator in reply to shallovercome]

You can use the 99% of your WBC to calculate your Absolute Lymphocyte Count, which is 99% x 112,000 or 110.9. This means that your neutrophil count must have been dangerously low last October and your doctor should have warned you to take care to avoid infections. (All your remainng white cell count percentages have to add up to 1%, so your absolute neutrophil count can't be more than 1.12. It needs to be above 1.5 ideally.)

Per the other good answers from

cajunjeff and SofiaDeo , you may nearing time for treatment, but the effects of that last infection may be confusing the picture.

Neil

[cajunjeff]

Shallovercome, treatment decisions on when to treat should be made by doctors and some people on here might be concerned about giving medical advice to you.

With that caveat, I would say from a layperson view that its likely you are nearing treatment and that your cll is active now with your lymphocytes more than doubling in 6 months, your platelets dropping below 100 and your hemoglobin falling.

Its good that you still feel well, but that could change soon particularly if your hemoglobin continues to drop. I felt noticeably worse when my hemoglobin dropped below ten.

Its good you are seeing your doctor soon. My guess is he will discuss treatment options with you. I think it is best to start treatment while one still feels okay but when that is subject to change soon. Good luck to you.

[shallovercome in reply to cajunjeff]

Thank you so much.

[Phyllis731]

My WBC count was up to 357,000 before my hemologist started me in Imbruvica. W+W for about 10 months prior.

[shallovercome in reply to Phyllis731]

Thanks. Some reasons to smile.

[jerard59]

My doc always said treatment would begin when my quality of life declines. I was fine up until about 2 months ago and the things quickly went south. I am sitting in MSK writing this awaiting testing for my entry into a phase 2 trial. Let your body guide you because that is what the docs will use. Many different counts go into the decision to treat or not. Just speak with you specialist and have the questions written out so your mind doesn't glaze over and you forget anything.

[lindalou5]

As a person who feels that she waited too long to start treatment, I will add my opinion. If I would have known or realized just how sick I was, I would have started at least 6 months before I did. I was urged by two different doctors to start but I was stubborn. I had the bad counts, many swollen nodes, large liver and spleen, but kept telling myself that I was OK....I was scared to start on that road. So during that 'waiting' period, I made leaps in a bad way so that when it came time for the meds, I had so much crap in my body to get rid of. But I don't think that I would have listened to Anybody at the time. Best of luck!