Neutropenia information please

Public Archive
1

I am wondering if anyone can advise me. I have just spent a period in hospital with a fever after chemo. I have had bloods done over the last week, and been at various levels 2.6 million, 2 million, and now 1.8 million. I think the earlier one was 2.6, my brain is puddled now, anyway. I have been put on antibiotics and told just to keep an eye on temp and if things get worse to contact the chemo department.

My question is this. I believe, not totally sure so if I am wrong sorry, but I believe its serious when they get under 1 million. Anyway, this chemo lark is new to me and I am finding it quite frankly quite scary, especially after being told by a friend (who is a nurse and a cancer patient) that if you get an infection with neutrophenia and it starts to travel around your body you could be dead in hours. Anyway, back to my question, if my neutrophils have dropped that much in just a week and the fact I have had another dose of chemo on Friday, are they likely to drop to the dangerous below 1 million level in a few days or a week? Sorry if I sound a bit dim, but I am finding all this pretty scary.

I know that someone or a few of you lovely ladies will be along to give me some advise and help me understand it all a bit better.

Thank you.

xxxxxx

2

It’s all rather frightening isn’t it!

When I have my first chemo - I went netropenic within 7 days of having it. My levels dropped from 3.6 to 0.01 which was the lowest anyone had ever seen! I was admitted to hospital and given antibiotics over the following three days.

Take your temperature every single day - you will soon get to know what is “normal” for you - for me it is 36.6. If it is 37.5 or higher, take it again in an hours time - if it is till 37.5 after an hour then ring into the unit for advice. If your temperature ever reaches 38 and above, don’t wait - ring in straight away as a high temperature is one of the first signs of infection.

3

Hi SGL,
it is very frightening isn’t it?

This is just my experience, I’ve no medical qualifiations whatsoever.

The 1.0 level seems to be the cut-off for chemo to be given. If you test at below 1.0 they will delay chemo until it recovers. My hopsital did bloods 2 days before chemo (I was on a three week cycle) and if it was below 1.0 would repeat them on the day of chemo. Twice whilst I was on FEC this happened, but there were no delays as each time it was back up above 1.0 on the day. When I was on Tax, which really hammers your blood,they gave me a jab to boost white cells after 24 hours and I had no problems at all.

As for how it changes over the cycle, as far as I understand, it is several days til your neutrophils reach their dip, after which they rise again fairly quickly. The three week cycle is usually suitable for people to get back above the magic 1.0 level. I was told by an oncology professor (I’m his minister!) that the dip is around day 7 - 10 after chemo.

In terms of neutropenia, the 1.0 level is, so far as I can gather, the cut-off for it to be safe to give chemo, but not low enough to be dangeorus from a febrile-neutropaenia or infection viewpoint.

It is scary, and what your nurse friend says accords with what I was told. However, deaths due to neutropaenic sepsis are very rare.

If you want a definitive answer, I’d suggest you ring the help line and/or speak to your onc. Please be reassured they won’t put you at unnecessary risk by giving chemo if your neuts are too low.

Try not to worry too much about this - it is all too easy to frighten ourselves.

Like super trouper I took my temp every day (night and morning made me feel more secure) and I went straight to A&E the one time it went over 38 - luckily for me right at the end of chemo - and was given antibiotics and sent home. It scared me, but I knew I’d done everything I could to stay safe.

Gentle hug

4

Hi SGL

Both RevCat and ST have said it all-I quite agree with their advice.
I knew all that but got told off by the Onc when I didn’t report in between sessions how thickly coated my mouth was. It made me feel really ill (oral thrush) but didn’t give me a temp. I was put on anti-fungals each time after that.

Make a list of all your side effects, even if you think some are trivial, so you can discuss it all with the onc on your next visit.

All the best- big hug- Diana xx

5

Thank you ladies, your so helpful, its really so helpful.

I mentioned today that I had lots of ulcers and was told that I had to keep an eye on them.

Its such a scary time, you feel like you are walking in unchartered territory.

xx

6

hi SGL , i have a feeling your drifting in to panic mode , and i can quite understand why … i work for the NHS as a phlebotomist, and i know from experience your blood will be tested before you have any chemo … everytime your due for the next chemo , your blood will be tested, to make sure your physically well enough to cope … your in excellent hands with the best of the best making decisions on your treatment … id try not to think about numbers and things that can go wrong … i know your at the moment in a very vulnerable place, both physically and mentally , you have had a rough ride and i can only imagine how you feel BUT … the onc and chemo team know their stuff, they wont be doing anything if your not well enough … when a blood sample is taken prior to chemo , the lab ring the onc with the results …if the results are good you get the treatment… if not its put on hold untill your blood count rises … the sore mouth sounds dreadfull , why not try swilling your mouth out with some natural youguart … worth a try . hope your feeling better soon sgl xx angie

7

I’m sorry you are having such a tough time.
I had neutropenia after my 4th FEC - my neutrophils were actually zero and I got an infection. I was on IV antibiotics and had blood tranfusions and was kept in for over a week. This happened after having had Neulasta which is meant to boost your immune system and stop you from getting neutropenia! I appeared to be a unique case at my oncology centre and they were very worried about me. As I had also had a blood clot caused by a PICC line, I was strongly advised to stop chemo and as I had had 4 which was enough for me to get Herceptin, I agreed.

As others have said, the hospital won’t let you have chemo unless your bloods are ok and possibly you will get Neulasta now - it works for most people, I believe.

It’s so miserable at the time, but I am more than 4 years on from this now and it’s all a fairly distant memory. Life is good now and I know the treatment was all worth it, even though it was incredibly tough at times. You will get through it too.

All the very best. I hope things will be easier next time.

Anne