surprisingly shocked!

[ninap]

hello everyone. yesterday was my 6 month bloodwork and visit with my CLL specialist. i was rather dreading the appointment, as last time round, my lymphocytes had doubled, and i was honestly fearful that i'd have to start treatment.

to my great joy - not only have the lymphocytes NOT doubled - they have gone down a bit! my oncologist was pleased and said i don't have to come back for another 6 months. but because i've had pneumonia this year (after my previous appointment - just to clarify.) i've got to get the pnemonia vax before winter, and if i DO continue getting sick, i may need to do sub cutaneous IG (which is fine with me!)

please forgive my ignorance here - but is this a common occurrence? i do know that lymphocyte counts fluctuate, but, this quite frankly floored me. if someone needs to burst my balloon - that's ok : )

I would just like to know if any of you have experienced the same thing? thanking you all...

nina~

[cllady01 Former Volunteer]

Yes, i have and it is not uncommon for the fluctuation, in fact it seems to be most common, unless there is progression or infection.

Your higher reading in your blood draw before this one is most likely due to the pneumonia. And, I agree, when it happens, there is a feeling of at least relief--sometimes joy and celebration.

[ninap in reply to cllady01]

actually i had the pneumonia AFTER my previous appointment - sorry i should have mentioned that!

[cllady01 Former Volunteer in reply to ninap]

Well, it may not apply, however, we are usually building up to an illness/infection over time, so it could apply. And the fact of your having had antibiotics? for your pneumonia bout--if it worked, would definitely have lowered the count

[ninap in reply to cllady01]

i had my previous appointment in November 2017. I went to Mexico January 2018 and as soon as i got back i got really with the pneumonia. i was only on them for a week. would that actually show up in my blood work several months after the fact?? i find that a little surreal *with all due respect of course*

[AussieNeil Partner Administrator in reply to ninap]

In hospital admissions for IV antibiotics, where I've had daily or near daily blood tests, I've seen my lymphocyte count plummet. On one occasion it took about 2 years for the count to exceed the high prior to IV antibiotics. Most recently, it bounced back in less than a week...

[ninap in reply to AussieNeil]

a pity you've had to be on IV antibiotics and be admitted to hospital on a few occasions! i hope you're doing better now...thank you.

[AussieNeil Partner Administrator]

While our Lymphocyte Count is mainly CLL cells, there are also normal B-lymphocytes and various types of T-lymphocytes included. These can all vary but as the lymphocyte count increases above the normal range, it is more and more due to variations in the number of CLL cells. CLL specialists don't get interested in looking at doubling time until the lymphocyte count exceeds 30, partly because below 30, there's so much noise. I've seen my counts nearly double and then more than halve in monthly blood tests.

[ninap in reply to AussieNeil]

i had the feeling this might well be the case. thanks for sharing your experience Neil.

[Hidden]

Ninap,

I was diagnosed about 15 months ago. My WBC held steady at around 24K and my Absolute Lymphocyte around 23. My Hematologist makes me get blood work every month and 3 months visits..in one month last winter my WBC jumped to 43K and my Absolute jumped to 32. Since then (last 3 or 4 tests) my WBC had dropped slightly each month and my Absolute has jumped between 25 and 30.

Scott

[ninap in reply to Hidden]

it seems we are all over the map with results. i hope you're feeling ok - best wishes....

[vinnet in reply to Hidden]

Hello Scott

I am 67 M dx 18mths. What about blood chemistry?

While my WBC are steady, my RBC, Hemoglobin etc are slightly lower. ( they r now below normal.) My next appt in two months.

best wishes

vinnet

[Njsailorgirl in reply to vinnet]

I struggled itch low hematocrit and hemoglobin causing me exhaustion and fatigue. I was then dx with MDS (mylodysplastic (sp?) syndrome. To boost these values I started Procrit injections, weekly, until these values fell into range. I haven't had a injection in several months but reg bloodwork to avoid crashing out of range. BTW.....insurance covers the. Injections only if both H&H are out of range.

[Cfighter]

My wbc count was 335,000 before I started treatment( I was diagnosed 5 years ago).I wasn't pushed to start treatment because I wasn't symptomatic beyond neck nodes enlarged but not huge at all and they fluctuated by going down bigtime when I exercise.I just began treatment the 1st of feb of this year and am having some astoundingly good reports using Imbruvica while continuing my regular organic plant based diet and daily exercise. Our bodies,although made up of the same components, will differ from person to person.

[Canuck901 in reply to Cfighter]

Congrats! Share your plant based diet please!

[Dawn-Marie]

I was doing every 4 month visits and to my surprise hematologist changed it to every 6 months. So happy wanted to do the happy dance!