Nuetropenia level 0. O

[Feavers]

Hi all, l went to sign forms to start Treatment for the first time and they did a fbc nuetropenia 0.1 told to get antibiotics, I have been in hospital since Monday they can't seem to find the cause of it nuetropenia was allways good, but I do have a sore throat and massive lymph nodes in neck painful they are testing all this, but the weard thing is that all my other markers are coming down, they say they have never seen this before. I can't be the only one but can they fix it there done 🤪Right I need all you with the experience to give me some news 🤞🙏thank you all

[Justasheet1]

Feavers,

I am no expert but my neuts plummet with every infection. Perhaps they can give you a medicine called Neupogen that stimulates growth of your neuts?

Feel well,

Jeff

[Feavers in reply to Justasheet1]

Thanks, they are giving me antibiotics and another jab in stomach, recovered to 0.7 but are trying to find out what caused it because I have never had treatment was a obout to start v and O 👍

[Justasheet1 in reply to Feavers]

Feavers,

With treatment at the doorstep, your marrow is probably full of CLL and it can’t respond properly.

If it’s an infection your numbers should bounce back in a week.

Good luck.

Jeff

[Feavers in reply to Justasheet1]

Thanks I have a sore throat, so guessing infection 🤞

[Theplodder in reply to Feavers]

Hi

I have had multiple instances where my neut count has been low (as with you as low as 0.1). Each time I start the stomach injections and this raises them back up. I believe this is the normal course of action.

Hope that helps.

Alan

[Feavers in reply to Theplodder]

Thanks that's exactly what they did and antibiotics

[AussieNeil Partner Administrator]

Fevers, I agree with Justasheet1 that your neutropenia is probably due to your CLL, particularly given you have reported having low platelets for over a year. I began treatment with my neutrophil count supported by self administered up to daily G-CSF jabs into the skin over my stomach and my neutrophil counts were very similar to yours. I ended up in hospital with febrile neutropenia a week after starting treatment with acalabrutinib. Lots of tests found no cause for my fever (this is quite common with febrile neutropenia when you have CLL) and I was on two different IV antibiotic infusions. My first obinutuzumab infusion put me on the path to recovery and I breezed through the venetoclax ramp up. That was over 5 years ago and my lymphocyte count and other counts other than slightly low platelets are still normal, as are my nodes and spleen.

Neil

[Feavers in reply to AussieNeil]

Thanks neal, I think what was confusing them was I hadn't started treatment

[AussieNeil Partner Administrator in reply to Feavers]

I was wondering why your treatment team were confused. What you going through is rare, but not unique. My neutrophil count averaged 1.0 over the 11 years I was in watch and wait. It was an investigation into why it dropped to 0.4 that led to my diagnosis.

Neil

[Feavers in reply to AussieNeil]

Hi I think they are just trying to get to you cause, to go from normal level to 0 l had biopsy on lymph node yesterday, I am getting camera down throat today still in hospital, I guess they are ticking all the boxes thanks

[Floxxy]

I have had neutropenia throughout both my treatments. I was on FCR in 2019 and was admitted to hospital with a count of 0.0!!! and an extrermely high temperature. I was in hospital for 5 days. I was given additional antibiotics and filgrastim injections. They took a long time to recover at the end of my treatment and have always remained on the lower side of normal. Good luck with your treatment. x

[Feavers]

Thanks I think they have a plan to get me out of hospital, what worried then was the drop to 0 without ever having treatment 🤞👍

[scarletnoir]

It's certainly not unusual post-treatment - after my first chemo round (over two days) I was told to come in to A&E at once if I felt ill... which I did a few hours later. I had neutropenia and a mystery infection (never identified) with a very high temp. and spent 9 days in the intensive care unit...

You seem to be doing comparatively well!👍

(That was in 2012 and I'm still here, so.. keep it up.)

[Feavers in reply to scarletnoir]

Thanks for the response, what was confusing them was that I hadn't started treatment, turns out I had tonsillitis,

[Justasheet1 in reply to Feavers]

Feavers,

If you’re like me, your numbers should bounce back about a week after the infection resolves.

I’m glad they got to the bottom of it.

Jeff