Hi
Am on my 3rd cycle of Vinorelbine and my white blood count is very low, so low in fact yesterday that the nurses rang the oncologist to check that I could have it. They are surprised as I had FEC last year and didn’t have any problems woth my blood counts. I seem to remember reading some posts before about an injection that was available to boost the white cell count and I wondered if anyone had any experience of it
Thanks Kathryn
Hi Kathryn,
Yes, it’s called G-CSF and the trade name of the one I use is neulasta. i’ve had small doses every day for 3-4 days, or one big dose, which is what i’m having currently (taken 2 days after chemo). I got the district nurse to teach me how to do it myself, as I wasn’t going to wait in the whole morning fo her to come! (that was when it was daily doses). I’m really not a person who likes needles at all, but i was determined and it’s really not so bad. i even did it when i was on my own last time (always had OH or a friend standing by to cheer me on before).
There are some funding issues. My Health Trust decided halfway thru that they wouldn’t allow people with secondaries to have them any more (because of high cost) as there was no research evidence that it affects the outcome!! Someone happens to have done some research on outcomes for people with primary BC so they have to provide it or would get sued. It’s so unfair. I was all prepared to go to my MP etc but Onc found a way around it. There are certain categories who can get it - eg if treatment is being severely delayed by putting off chemo each time, as mine was.
I read that it costs nearly £1,000 per injection!
Anyway, this is only my health trust (Hillingdon), yours may be different.
I hope this answers your question - ask away if you want more detail.
Hope they get you sorted out
all the best
Jacquie
Hi Katie,
Taxanes, vinorelbine and gemcitabine are notorious for knocking your blood counts for six, so don’t worry it is not unusual. If you cannot get funding for G-CSF they either wait a week or so until your bloods pick up before continuing treatment or else give you a blood transfusion.
Jenny
x
Hi Kathryn
I did have the injections for a week when I was on FEC at my first dx and they did do the trick. However when my bloodcount was low due to carboplatin/gemcitabine I didn’t get them also my bc was low on several cycles. My onc did indicate that they are expensive , did have 2 blood transfusion though and chemo was delayed several times. Good idea about the MP, Jacquie. Might have to go down that road if they refuse!!!
warm wishes
Angela x
Yes there’s a real and disgraceful postcode lottery around G-CSF injections. I have private med insurance and got them after each AC and taxotere treatment for primary bc and my bloods were always OK.
Am now living somehwere else and started vinorilbine with an onc who has a thing about not prescibing them (her NHS patients don’t get them and she seems to think she has a mission to save private insurers the cost.) After my first session of vinorilbine (combined with oral xeloda) my bloods were too low for the 2nd session so I had to make a real fuss to get neulasta (insurance co. AXA PPP said yes…it was the onc dragging her feet.) Once I got the injections my bloods were OK.
This is a real issue to be campaigned on…I asked Breakthrough to take it up over a year ago but they weren’t interested in making it a national campaigning issue, though said they would support any local campaigns.
Yes G–CSF is expensive but so is the cost of hospital stays, repeat blood tests etc.
Jane
Thanks everyone for your replies, my treatment is through private health cover, BUPA so I will ask my oncologist next week when I see him. Although my bloods were low he told the nurses to press ahead so my treatment hasn’t been put off yet. I am still working and am a bit worried about infection but don’t really want to sit at home and put life on hold!
Thanks again
Kathryn
Hi Katie
BUPA will pay for the G-CSF I am sure. My insurance company is AXA PPP who are generally meaner than BUPA. You could check with them before yuo see your oncologist.
best wishes
Jane