Six month checkup coming up.

[RK66]

I have been on watch and wait for the past two years. My AlC has gone from 24 last Februay to 47 last month on a routine blood panel done by my GP's lab not my oncologist's. My WBC was 31.38 last February and my lymph percentage was 76%. My most recent WBC was 51.4 and my lymph percentage 91% if the GP's lab is correct. I remain asymptomatic and I feel good. What should I expect to hear in my appointment next week?

Aussie Neil if you are reading this post, I'd be interested to know your thoughts. My guess is no treatment but my oncologist will want to see me in three months. At this point, I think six months is too much to hope for but my doctor may say just that but to notify her if I have any symptoms. Reading other cases in here I feel extremely lucky not to be in treatment so far considering I am an intermediate risk CLLer whose FISH results were Zap 70 positive (over 30%), CD38 positive (60%), Trisomy 12 and unmutated.

Best,

RK66

[Rpshe1]

What's your hemaglobin and platelets? And how are you feeling otherwise?

[RK66 in reply to Rpshe1]

Platelets 170. Hemoglobin normal 14.5. I feel fine and have no symptoms.

[Rpshe1 in reply to RK66]

My Onc didn't become concerned until platelets started dipping below 100, hemoglobin dipped below 10. This was after ALC went from 39k to over 100k in 4 month period (Jan 2015). I had enlarged lymph nodes mostly in the neck, some fatigue thou minor. After the ALC jump I was monitored monthly with monthly labs. Went into treatment Nov 2015 after months of platelets & hemoglobin below 100 & 10, even though ALC had dropped below 100k. BMB showed over 90% infiltration of CLL cells. Just completed cycle 3 this week. Half way through 👍🏼

[AussieNeil Partner Administrator]

Hi RK66,

Given you are fine and have no symptoms, I would be most surprised if there was any talk of treatment. If there is, seek a second opinion immediately!

Given your ALC has roughly doubled over the past year, your specialist may wish to monitor you more closely, which may just mean blood tests being more frequently seen by her to see if they continue to climb or level out. Your review period may not even change, or perhaps go to every 4 months - but perhaps to reassure you as much as anything. World class CLL specialists consider a climbing ALC as the least important reason to start treatment if that's the only concern:

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Finally, totally forget the percentages and concentrate on absolutes, i.e. that you have enough neutrophils to protect you from infection. Percentages are a good rule of thumb check for patients without leukaemia, but growing white cell counts distort their value for us, making them useless.

Neil

[RK66 in reply to AussieNeil]

Awesome answer Neil. I will look forward to my appointment without apprehension. Thanks for being the constant calming force and voice of reason in this community.

Best,

RK66

[AussieNeil Partner Administrator in reply to RK66]

Be sure let us know how you get on as I'm sure others in a similar situation will be interested.

NeIl

[Bethan49]

Wishing you all the very for your appointment. My 2nd one since diagnosis is coming up in a few weeks and now I have my head round watch&wait I too feel very grateful.

Praying for a good result!