blood count too low for chemo /again

was due for my 3rd chemo last Thurs, but white blood count too low and also l had low neutrophils, so have been delayed for another week. This happened after my 1st chemo, when I was again delayed and my chemo strength reduced by 20%
Has anybody any suggestions that might help build immune sytem back up , also have become allergic to dressings on my Hickman line

Good luck to all out there, it’s hard I know but I read a saying the other day :

WITHOUT HOPE YOU CLOSE THE DOOR ON TOMORROW

LETS MAKE TOMORROW OURS

Hi Ruffy

Sorry to hear about the delay in your chemo.

There is an injection called G-CSF (granulocyte-colony stimulating factor) which stimulates the bone marrow to make more white blood cells. There are several types of injection…one is called neulasta. The injection is very expensive and so many Hospitals are reluctant to use it but mention it to your oncologist and try insisting on it. (I have private medical insurance but even so my current oncologist was very reluctant to prescribe. In London where I was first treated I got it much more easily.)

It IS possible to get this injection on the NHS and the fact that your neutrophils have been low for both chemos strengthens your case.

Jane

Thanks JaneRA for your kind support; I will certainly ask for it. An oncologist away from the hospital that I am being treated said that treartment is not offered as a matter of course (regardless of illness) due to costs and cutbacks but if you ask for it they are more liable to say yes / fingers crossed !!! . Hope things are going well for you

very best wishes

Ruffyp

Hi Ruffyp

I agree with JaneRA. Neulasta is definitley the way to go. My Onc prescribed it to me as a matter of course but my blood count still dropped after Chemo 1 as I had an infection. 8 days after Chemo 2 though and I was feeling almost normal! Couldn’t believe it.

There may be some herbal options too that you could check on like Echinacea, but check with your Onc before you take anything. I swear by Echinacea and Vitamin C drinks called Orivite as immune system stimulants whenever I’m feeling generally low.

What kind of dressings are you allergic too? I’m allergic to steristrips and use leukostrips instead on my picc line and if you need a large plastic sheet style dressing, I use Tegaderm as loads of others turn my skin dark red and make it burn.

Good luck.
Moira
xx

Hi All

Am getting a bit worried about my next chemo as reading all these posts, it seems everyone has a blood test before their chemo which shows their blood count and white cells. My next session is on Wednesday and as far as I am aware, I have not got to have a blood test first. DOes this mean they will give me one on the day and make us hang around, cos I hope not as got my sister looking after her baby and my baby!

Does anyone have any info on this or know more details.

Ruffyp - hope you are OK and hopefully you will get your next chemo session without any probs. Can’t be very nice having to wait for it then to be told you can’t have it, think that would tip me off the scales. Think you should get tough with your hospital (or if you can’t face it get someone else to battle it for you). You deserve the BEST treatment around to help you through this.

Take care

Thanks
Dawn

Hi Dawn,

Every hospital is different and before my 1st chemo they did a blood test a week before at my oncologist appointment but for every other session I get blood taken as soon as I arrive, then have about an hour wait to see my oncologist who confirms if my blood count is ok. He then orders the drugs from pharmacy which is about another hour wait and then I get hooked up. I’m usually at the hospital from 8.30am to 1pm.

I did have the option to just get blood taken on the Wednesday and then get the chemo on the Thursday but I prefer to get it all over and done with at once. My 1st time around, I went to a busier hospital and I was there all day from 9am to 6pm as there must have been close to a 100 patients.

If you give your hospital a ring and ask to be put through to the specific unit you have to attend, the nurses will be able to tell you if you’ll be having a sample taken and approx how long you’ll be.

Moira
xx

Hi Dawn,

I have my blood taken at the hosp the day before my chemo, in the morning. If I don’t get a phone call by 9 the following day it means my bloods are good and I am ‘good to go’ for chemo. I get a new blood test form each time I go for chemo,

Every hosp is different though I guess,

Good luck tomorrow,

Kelly
-x-

thanks to all who replied, have asked today for Neulasta and told it is not recommended as side effects outweigh the expensive costs of it. Sounds like a cop out to me and an excuse to save money.Are all of us who need it not worth it?) Have been advised to discuss it agagin at my next meeting with the onc. hopefully after my 3rd chemo , although the way things are going may still have just had 2 cycles. !!!
The dressing I am managing with at the moment on my line is Bio patch , even micropore is no good at the moment

Best wishes to all
ruffyp x

Hi Ruffy,

I had Neulasta after my 5th chemo after being hospitalised with neutropenia after the 4th. I had no side-effects after it, or at least I couldnt distinguish them from the side-effects of the Taxotere!! Given that I felt better after the 5th though than the 4th I think Im right to think there were no side-effects, if you know what I mean!

It sounds like a cop-out by your hospital and if I was you I would make a fuss about it! Neulasta has made this last cycle very bearable indeed!

Pauline x

Hi.
I am having 2 weeks cycles of chemo (shorter than usual, banking on being young, usually the doc says they are 3 weeks). Because of the shorter cycles, the onc has prescribed Neulasta as a matter of fact - I am to give myself the injection the day after.

No side effects. I have been warned that it could give “bone pains”, because it kicks in high gear all the bone marrow to produce bloodcells, but I haven’t noticed anything. I’ve read all the details on the med notice, and it isn’t expected to generate any other frequent indesirable effects… so I am not sure what the *** the hospital is talking about. Definitely bring it up with your doc.

Hi Ruffy

My neutrophils were low after my 3rd chemo and it was delayed for a week. Subsequent ones I had Neulasta the day after my chemo. I did have side effects- bone pain and joint ache- and I do seem to remember having a rash which got worse after each one. I did try Neupogen which are 5 injections and these are cheaper. As I injected myself and the side effects were very similar I asked to go back to Neulasta and they gave it me. I had 8 FEC.

After Ihad had the first injection it was not the usual onc I saw but a registrar from Christies and I asked if I had to have this injection as I didn’t like the side effects. His reply was that if the chemo had to keep being delayed due to low blood count then it was possible it was not as effective as they had worked out the timings.

With regard to blood tests - I had mine the day before chemo and the practice nurse at my GP did it. Chemo unit sent me home with form and I made appointment with nurse for morning before. Onc appointment was just before chemo so when I walked down to unit everything was ready. They were usually running late though.

Ask them about neupogen instead of neulasta if they’re concerned about money.

Good luck

Marilyn

Hi Ruffy,

I am on arm 2 of the TACT2 trial so had accelerated Epi, every 2 weeks rather than 3. I was given the Neulasta inj by my boyfreind 24 hours after each chemo. I can honestly say that I suffered no troublesome side effects from this inj at all. Occasionally I had very minimal bone pain, but it never lasted more than a couple of hours and I just took Nurofen for it as advised. I know its really really expensive but I reckon them saying they won’t give it to you because of the ‘side effects’ is definately a cop out!!

My blood results were always awesome on this so I reckon its defo something you should persue,

Take care and good luck,

Kelly
-x-

Hi Rufy,
Sounds like you are being fobbed off to me. I’ve had the neulasta injection with no obvious side efects. Apparently the injection is very expensive - but surely cheaper than having to admit patients to hospital with an infection? I’de ask about it again, good luck with the next chemo
cheers
carolinea

Just reading this thread, and wondered why some people are getting chemo every two weeks??? I would much rather have that than 3 weeks???

Thanks to all who replied, you are a wonderful reassurance .I have had blood test today so fingers crossed for tomorrow;definately think it’s a cop out and intend to challenge it

special best wishes to you all

ruffyp

Hi Ruffy

I’ve got private healthcare so Nulasta was prescribed on 2weekly regime as matter of course. I’ve had 1 nulasta injection after 1st cycle and had no side effects from it at all, so ask your doctors again and maybe you could really insist on it. I’ve worked in NHS clinics and when people keep coming back asking the same thing, docs do give in!

Its really really unfair for you to have your treatment delayed so much when it needn’t be just because of 1 injection that you deserve. You could even say that the delay is affecting you psychologically and you can’t sleep and when you do sleep, you get nightmares! It depends how honest you are -but in my experience of people pushing for other things, if you keep asking they give in.

But, it might mean more stress for you … up to you really.

I do think its unfair that some of us get it and others don’t -not fair at all.

Let us know how you get on.

Hannah

And -have you looked into Life Mel honey? Its very expensive at £45 a pot but is supposed to help raise you white cell count and other blood results during chemo. Do a google search and have a read -my mum got me some and I’ve just been taking it for 4 days over chemo time to try and make it last.

Worth a go maybe??

Hannah
x

For Lynne: treatment every 2 weeks rather than 3 depends on the strength of the person (I am relatively young, 43, and in good health, so it was expected I would react well). Of course it would get delayed if I get too tired. Ask your doctor, you may be able to do that too… I hope to hold on that, as that means my last treatment would be on the 3rd of December… So I can plan a VACATION for xmas!!!

Definitely ask for the Neulasta. I did my blood count today, after 2 weeks exactly: and the doc say it is even higher than when I started!!! LOL. As for Princess, I also had little side effects.

Hi Lillith

I too am young, I am 31. If this is the case I am def gonna ask if I can have mine every two weeks. I suffered very little with first chemo, however have been told by BC nurse and Chemo nurse that its usually the 2nd treatment that knocks you so i guess i should wait and see, however I am def gonna ask about it!

I hope yours all goes well and you can plan a holiday - where do you fancy travelling too?

Lynne

Message to Hannah11 , have already tried Lifemel, taking it the week before blood tests due, but to no avail, but it might work for you,I hope so . I was wondering about trying aloe vera and /or echinacea, but never sure when to take it , and medical team wont comment , if I take it as soon as I’ve had chemo , does it aid the cancer cells, rather than let the chemo do its work? Managed to get chemo last Thurs a week late again , fingers crossed for next time. If count too low again will certainly have a very strong debate with onc. as an oncologist from another area has told me delays not good

ruffyp
Have a good holiday Lillith , I had one post op .before chemo and it was wondeful