lots of bloodwork

[imdfox24]

hi, i'm new here AND i write on behalf of my husband, ken, as he's not big on communicating. he started ibrutinib 3/10/21. his oncologist wants him to have his blood drawn every week for at least the first month. is this normal? and more ekg's and back to her again. i guess in general there is a lot of monitoring at the beginning of treatment? thanks for any input. diane.

[AussieNeil Partner Administrator]

Hi and welcome to you and your husband. You have plenty of company with others here on behalf of their partner, sibling, parent, friend.

With regard to the frequency of blood tests, more frequent is better than less so and the frequency should reduce over time. It would help others respond if you could share more about your husband's status prior to starting treatment. How low were his platelets, haemoglobin and neutrophils? Does he have any other health conditions (unpleasantly termed comorbidities)?

By the way, you've posted unlocked, which can help others find help in this community, but perhaps you'd prefer to keep this discussion private on behalf of your husband. This post explains how you can lock your post and make it private.

healthunlocked.com/cllsuppo...

Neil

[imdfox24 in reply to AussieNeil]

thanks for your quick response. btw, there are so many medical words and numbers used in this forum that i don't understand yet. i'll get there. so i'll provide ken's numbers from 2/23/21, 3/10/21, and 3/17/21 (the 17th was done at a different location). in order of platelets, hemo and neutro:

2/23 - 129; 11.1; 2.9

3/10 - 136; 10.0; 5.0 (first day of ibrutinib - and first day of any treatment whatsoever, after 10 plus years)

3/17 - 136; 10.6; the neutrophils has 2 designations on this report, and the "standard range" is different. the 2 read like this:

Neutrophils (Abs) 5.6 x10E3/uL. (standard range 1.4 - 7.0 x10E3/uL.)

Neutrophils 3 % (standard range Not Estab. %)

of course i expect the oncologist to educate me, just providing the numbers you referred to. don't mean to bog you down. in answer to your other question - he has no other health issues.

so my qeneral question remains to anyone: did you have to go for bloodwork once a week when you started treatment.

thank you so much for this site and all of your hard work.

diane.

[AussieNeil Partner Administrator in reply to imdfox24]

Hi Diane,

Due to differences in pathology lab equipment and calibration, it is important to use the same lab for the most accurate indication of any trends. Likewise some blood counts have a daily variation, so having consistency in when the test is taken and what is done beforehand (e.g. vigorous exercise) can be important. Of course, a different location may still mean the blood sample is still processed by the same pathology lab if we are just talking collection centres.

With CLL, totally ignore percentages. You only need them to calculate absolute counts, which you already have. Looking at percentages can be misleading as I explain here: healthunlocked.com/cllsuppo...

Ken's platelets are below the lower reference range, but not concerning so. Platelet counts bounce around considerably, because they tend to clump and automatic counting misses those in the clumps. Transfusions aren't required unless they drop down below 20.

I think Ken's haemoglobin is probably why the weekly tests were requested. His neutrophils are fine. Above 1.8 is perfectly normal, so his risk of infection from the development of neutropenia appears unlikely.

To maintain organ health, it's important to maintain haemoglobin above 8.0. Under 10.0 is a trigger for starting treatment, so it's fitting that Ken had a count of 10 when he started.

Lymphocyte counts increase for the first few months on Ibrutinib for about 2/3 of patients. It's caused by Ibrutinib disrupting the CLL signalling that keeps them in the nodes, so they move into the blood, where they eventually die.

There are of course other test results in the blood biochemicals that monitor changes in liver and kidney and other organ health, etc that Ken's oncologist would be monitoring.

Neil

[imdfox24 in reply to AussieNeil]

hi neil, thanks so much for the education! by the way, i didn't mention ken's other health issues as it relates to cll, but i realize most things relate to cll. so just for the record, he had the first outbreak of shingles in his life first week of october. over 5 months later he still has them, albeit with reduced pain and discomfort since the onset. he's been on prescriptions since october. and his eyelids are very swollen (not shingles) but eyesight is great. i think i see the swelling going down since starting ibrutinib. thanks, diane.

[imdfox24 in reply to AussieNeil]

oh well more challenges. ken was diagnosed with covid today. going to infusion clinic tomorrow for bamlanivivmab, a/k/a BAM

[AussieNeil Partner Administrator in reply to imdfox24]

Good to hear that he is being well looked after. Please keep us updated and let Ken know he has plenty of support here!

Neil

[imdfox24 in reply to AussieNeil]

😘