Hi All,
Was just gearing up for No 3 FEC tomorrow but now told that White Cell Count 1.3 and they like it to be 1.5? What a pain! How long do they normally delay things in order to let the count go up and is there anything I can do to get them up? Also, should I have noticed any specific symptons to know they were low? Any answers appreciated feeling a bit fed up!!
Carolx
hi.
My 4th lot of FEC was delayed just before Christmas. It was delayed by a week… gutting at the time, mainly because I’d planned Christmas around it all and ended up being FECCED 2 days before Chritmas day! I didn’t feel as though my blood were low, ie not tired or ill, but after the week I realised I was low emotionally, very tearful… not sure if its a connection.
I was given a neulasta injection to boost my bone marrow after I actually got my 4th FEC,
I asked if it was normal and the nurse said yes it normally happens to most of us at some point!!
just so annoying, but only a few days set back and they want to make sure your body is a strong as possible!!
Good luck
Sarah xx
hi - the usual delay is 1 week I think
I too believe that the tearfulness and emotional sensitivity is due to low white bloods - I always feel v tearful in week 2 into week 3 of my cycle and I am certain that this is the reason - some of the nurses think that too
Good luck with your treatment xx
Hi Recs,
I’m pleased that makes some sense to you to!! I thought it may just have been my theory!!!
Sarah x
ive been wondering the same thing. My count is low so im not sure i can have my 3rd fec next week either.
Hi, I just had my 3rd chemo cancelled due to low neuts - 0.7. Re booked for next week. I asked the nurse about what to eat and she said mushrooms - try various, but have read that shitake are best, and also coconut! havent tried this as unable to find one. Have also been taking Manuka honey as lots of people seem to swear by this, but hasnt done me any good. Love Jane
I was and still am taking the manuka honey too!!! didn’t work for me either, but I’m still taking it…hoping that it’s keeping away colds and coughs!!
S x
Hi everyone I developed Pyelonehpritis New Years Eve and my Neuts were 0.4. Spent the next 4 days in isolation on IV antibiotics.
Fortunately they came up enough to get my chemo (AC or CA can’t remember which way round) Saw the Onc yesterday and he said the dose was too strong but they didn’t want to reduce it if possible, so has put me on GCFS injections to boost my immune system.
They say the side effects are flu like symtons, does anyone has experience of this please?
I am trying Manuka honey too, how is everyone taking it, drinks on toast??
Love Vicky XX
Hi, Island girl, I had Neutropenic sepsis and end up in the hospital for five days after new-year. My Neuts was 0.1 and I was given GCFS injection while in hospital. Yes, it gave me whole body-pain like flue but I felt better after took Paracetamol.
Take care
Hi there
I don’t think you necessarily have specific symptoms for low neuts unless you get an infection. My Onc has seen people with a count of zero but who have managed to avoid getting an infection (obviously not for further chemo at that point).
I was admitted to hospital with neutropenic sepsis as I developed an infection and my count was 0.1. I was given GCSF and that boosted it up in about 4 days. If you’re not on that for each cycle of chemo I would ask to have it. I know it’s very expensive but it makes such a difference.
Although waiting is horrible you really don’t want to get neutropenic sepsis as that’s a dreadful serious experience and I was told very serious. I was in hospital for 5 days and pumped full of antibiotics - so better to wait for cells to pick up.
take care
Elinda x
Islandgirl… I just take the manuka honey from the spoon or have some spread on toast. but then I like the taste of it!!
S x
My hospital have a limit at a neut score of 1 - and having said that, they still gave me my chemo when I had a score of 0.9!!
I had no symptoms, no infections, and felt absolutely fine. I’ve now had a neulasta injection so suspect they’ll give me one of them every time now. 4 more to go…
I asked if there was anything I could do to get my count up and they said there wasn’t, but I am just trying to eat reasonably well and am drinking an aloe vera drink to try and boost immunity. Not sure if it is working, but I haven’t been at all ill (except for a cough I got just after treatment No 1, and before I started on the aloe).
Hi Flora,
How are you going on with the Neulasta? Did you inject yourself? I had my first one on Christmas eve…hubby injected me! felt achey afew days after… lots of funny aches here and there which I’m putting down to that to! How long after chemo did were you told to have yours? I was told 48hrs after, but read on the neulasta pack that should take 24hrs after! I have my next Chemo on Weds so I’ll ask the question. I hope it has done the job and my bloods are high!!
Take care all and keep warm…really suffering with the cold weather… It must be the Chemo, i’m never normally this cold!! Practically hugging the log burner as I type!!!
Sarah x
hi girls
rachel here - i had consistantly low neuts even on the neulasta injections and each ONC has their own threshold for with holding chemo. The SE of neulasta are extactly as you descbribed fluey feelings, aching joints particularly ribs, breats bone, lower back and hips (all where our bone marrow is stored). Also directions for injection is 24hrs post chemo dose ( i checked this in my text books too) but it can be given really at any time to boost your blood cells.
Island girl I hope your Ok now we haven’t seen you on the other thread for while.
I didn’t find any thing to boost my neuts - if the chemo is doing its job then they will drop. But obviously anythingthat helps to proect against infectiion is worth a try providing it doesn’t interact witht he chemo that is
sorry for butting in - sending you lots of good positive vibes xxxx
Thank you for the replys, it it interesting the differant regimes out there, my GCFS is called Ratiograstin and I have to have it from day 4 to 9. My Daughter is a nurse and will give it to me. It is amazing how low some of your neutrophils have been, I thought mine was low but I am a bit of of newbie to all this chemo lark. No doubt I will be an expert before long.
Hi Rach, with Christmas then being in hospital I have been absent from the forum. They said in hospital I had neutopenic sepsis but getting veins for access was a nightmare. I am waiting now to have a Hickman central line fitted.
All my hair is gone now and I find the wigs uncomfortable so have only worn one yesterday to go for chemo. My daughter bought be a couple of 100% Cashmere beanies in the sale in John Lewis. Original price £25 each. They are lovely and warm, which is what is needed this weather.
Bye for now, keep warm everyone.
Love Vicky XXX
Hi
I’ve been neutropenic for most cycles - had neulasta after chemo 4 and had a horrid reaction so am now back to GCSF (just had last chemo). Neuts have regularly dipped to 0.3 but had no symptoms. I did have a mild chest infection that we caught early and was treated promptly, so really got away with the whole thing relatively easily, but between neuts and having a central line in, was 5 weeks over time with the whole caboodle.
Just thankful its over
good luck to you all xx
Hi Sarah
Had my Neulasta a little over 24 hrs after chemo, and the district nurse came round to give it. I mentioned to her that I would be happy to do it myself, and she just said it might be nice to have regular contact with a nurse in case I needed support… but I’m not that fussed TBH!! So I will ask if I can give it myself in future as I don’t want to be waiting in for a nurse each time. I had to do daily injections in the same way when I did the fertility stuff, so it’s no bother.
It gave me some neck aches and under my chin/glands area felt tender for about 24 hours, and I’ve been having some lower back aches/throbs occasionally which may be due to it, but otherwise its been no bother.
Let us know what results you get this week! Wishing you luck.
I’m having no trouble keeping warm - having hot flushes every hour or so does the trick!! Get yourself a fleecy blanket to snuggle into. xxx
Hi All,
Its amazing the differences in treatments and regiemes, isnt it?
My neutrophils dropped to 0.5 a week after my first session of taxotere, so I had a GCSF injection and they rose to 17! But because of that first drop, Im injecting myself on days 2,3 and 4 after each chemo session from now on. SEs are ok - as described by most of you, just general aches and pains, but nothing that the odd ibuprofen doesnt sort out 
I was taking Manuka honey religiously for my first cycle, it obviously didnt help! But I do take it every now and again - I find a couple of teaspoons in warm water is quite soothing, especially if my glands feel a bit up.
Hope everyones keeping warm today - Im 2 days post chemo, so have had a lovely duvet day watching Saturday crappy TV and its been great!
K x
hi its 4am, just reading your comments, might try the Aloe vera as i have two germ infested ankle biters(thats children) and v v emotional at moment so assuming blood count down, need a pick me up.
Actually what i really need is a duvet day, but it isnt going to happen unless i call in some serious favours
Dont want to go back to sleep as eyes all swollen look like monster hoping they will go down by the time i have to do the school run
Have just had my blood test done and have neuts down at 0.4. Was feeling really well, so surprised at the results. Have read the thread looking for advice on how to get the levels up. Next FEC due next Thurs, so really hoping I recover before then. Have been put on antibiotics as a precaution.
Any advice gratefully welcomed…