Do btk inhibitors kill neurophils?

[PACWOMAN]

I am reluctant to start taking btk inhibitors, despite being told I have astronomically high wbc, and no neurophils. I feel well and I'm very active, although occasionally tired and lightheaded, but I haven't had so much as a cough, cold or tummy upset this century, so it doesn't seem to add up. I try not to put anything unnatural in my body, and fear that the treatment might cause problems that I don't have at present. Any advice? X

[Psmithuk]

Someone who knows about these figures will, I hope, come along to help you, but 'no’ neutrophils sounds bad, while you need your lymphocyte figure to guess where you are in your journey. Has your consultant recommended a specific drug?

Chrisx

PS if you 'lock' your post to this community you will probably get more replies.

[PACWOMAN in reply to Psmithuk]

Thanks for your reply, I will see what the haematologist thinks when I see him in a few weeks

[AussieNeil Administrator]

Hi PACWOMAN,

This pinned post covers the reasons for starting treatment: healthunlocked.com/cllsuppo...

All CLL treatments can cause neutropenia (low neutrophils), particularly initially. That's because treatments tend to suppress bone marrow production. You can't defer treatment too long, because increasing CLL infiltration of the bone marrow causes other blood counts to drop. That can put you at serious risk of organ damage or dangerous bleeds when treatment further suppresses your bone marrow.

To have zero neutrophils (neutropenia) and not have infections would be very unusual, because we all have bugs in our bodies that our immune system struggles to keep in check when our neutrophil count drops under 1.0. Neutropenia is managed differently depending on the treatment drug. Typical approaches are reducing the drug dose or using G-CSF injections to boost production

Neil

[PACWOMAN in reply to AussieNeil]

Thanks for your reply Neil, I suppose as I have 0 neutrophils it can't get any worse! It just seems bizarre though, that I'm the only person I know who is NEVER ill, and take people 50-60 years younger out riding for up to 3 hours, and they're the ones who are tired and achy, and always getting covid, flu and colds etc. I have never caught covid despite my younger boyfriend and other friends having it.

[DriedSeaweed in reply to PACWOMAN]

If truly at zero all the time realize that if you do get a fever (even if you feel ‘fine’) you need to see someone immediately. Unfortunately, you would probably need IV antibiotics while they wait for tests and cultures to come back.

It is fantastic you are almost never ill. But with zero ANC if you do get an infection things could go downhill fast…

[PACWOMAN in reply to DriedSeaweed]

Think it was just another of the many cock ups I've experienced on the NHS. After I had a blood test I had various maniacs screaming at me that I had no neurophils (didn't even know what they were!), and should go to A&E! I felt fine, never even had a cough cold or tummy upset this century, and was in the middle of taking a 3 hour horse ride out. Next blood test and the one prior to that showed above average neurophils, so yet another mistake that caused me so much stress because they said I might die of sepsis etc. The consultant I went to see never even looked at me, only the computer screen, and then issued me with another blood test form that was in my name, but...WRONG date of birth and wrong nhs number. That is why I don't trust anything I'm told!

[DriedSeaweed in reply to PACWOMAN]

Good to hear it was a lab error. It is something you don’t want to have to worry about so you can carry on.

[Shedman]

Your post has me confused; “Do btk inhibitors kill neu(t)rophils?”

Yet you declare that you have no neutrophils..

If you have none, why would it matter whether treatment kills them, given that you have none to kill?

No! - severely neutropenic yet not developing infections?

That does not add up.

Your haematologist seems to be saying that treatment is urgent.. presumably he has mentioned that you are neutropenic, and that this is a dangerous health status?

Are you, perhaps, inclined to give doctors ‘the brush off’, possibly still in some denial of your CLL.. rather than quizzing him for clarity?

Eg.

How long might I safely delay treatment?

Am I neutropenic? - How bad is this?

How much might treatment disrupt my life?

Do my genetic markers suggest good treatment outcomes?

[PACWOMAN in reply to Shedman]

It was just the usual cock up, my blood test prior to that one and subsequent showed above average neurophils

[Shedman in reply to PACWOMAN]

What score is your above average? There is a range.