G-CSF…an issue, a rant and a personal update
G-CSF…an issue, a rant and a personal update I’ve written about G-CSF injections before, often to encourage other women hospitalised with neutropenia to push for them.
G-CSF (stands for granulocyte-colony stimultaing factor) encourages bone marrow to produce more white blood cells and can be given after chemo to prevent neutropenia…if your neutrophils are too low chemo has to be postponed and you are susceptible to infections,high temperatures, fever etc.
I never realiised at the time (2003-2004) how lucky I was to get a neulasta injecton 24 hours after each chemo. (there are three different kinds of G-CSF…granocyte, neupogen and neulasta.) I was never neutropenic through 10 cycles of chemo. Thanks to a good on the ball onc…and yes private medical insurance (neulasta injections are between £400 and £800 a shot…can’t track down for sure how much.)
I’ve discovered since 2003 that many(most) breast cancer patients don’t get these as standard…and know of many women from these forums who have really had to fight hard to get the injections on NHS. Some Health Authorities are much better than others.
Fast forward to 2007 and I am doing chemo again and guess what still have private medical insurance but a new onc cause I’ve moved…doesn’t use G-CSF as routine…and guess what my very first cycle I feel well but hey my neutrophils are too low 0.6 for treatment, so couldn’t have chemo yesterday…hopefully bloods will be bettter for Tuesday.
Have requested neulasta and know the insurance will pay…but somehat anxious about new onc’s response. But this feels outrageous and one bit of anxiety I don’t need right now.
In February I contacted Breakthrough about this issue. Apparently there are no NICE guidelines and insufficient research evidence to recommend G-CSF as standard. Its a wait and see approach as far as I can make out. My chemo nurse tells me that some people just seem to get more neutropenic than others…and I reckon I have dramatically shown that I’m one of them.
Apparently there is a trial through CRUK (no 1343) using G-CSF for breast cancer patients but no details or results on their site.
Would be interested to know other’s experience. Issues about drugs are not just about the treatment drugs but about the drugs which lesson side effects, quality of life etc. (another issue is the anti emetics we get given…the most effective ones are the most expensive…) I know there are cost effetiveness issues but what about the cost of all those emergency admissions to hospital?
Would love to hear other thoughts and experiences.
Jane
Hi Jane
I became neuropenic after my 1st Taxotare, had been fine on FEC. I was given the injection from day 4 following my next two Taxotares for five days each time and they worked. I think it sounds like the old post code lottery again. There does not appear a funding issue where I am as I have noticed a number of people being given them in the chemo suite. I am being treated at the Whittington in North London.
Geraldine45
Hi Jane I get Lenograstim injections for 7 days starting on day 3 - think these are to pull my neutrophils up post chemo. I have had 3 x FEC and just yesterday had my first Taxotere - again have been given these injections which I do myself. Is this the same sort of injection?
My mate who is on the same chemo treatment as me but with BUPA (but same Onc) gets a one off injection the day after.
I can’t have penicillin or erythromycin, so thought that was why I was given it, but not sure - will check next time with my Onc.
Anita 
Thanks Thanks Geraldine (I know the Whittington well…lived in north London for many years) and Anita.
It all looks so interesting:
There are three main G-CSF drugs:
Granocyte( lenograstim) cheapest (I think)
filgastim (neupogen)
pegelated filgastrim (neulasta) most expensive
Neulast is a single injection given 24 hours after chemo…the others involve several injections over severl days.
Draw you own conclusions.
Jane
PS Got my technical info for Cancer Bacup website.
Hi Jane I had neulasta 24hrs after each chemo[paid for by insurance].I was sent copy of invoices and each one was£1070! My blood counts were fine till 10days after no8 my last one of 4fec and4taxotere.I developed neutropenia and was in hospital on IV antibiotics.I was given a booster shot of gcsf into abdomen on admission and after 48 hrs my counts were normal andI was discharged.I think its a wonder drug and,as my insurance is only for 2years, we have said we would remortgage the house to pay for it if I have a recurrence.How are you?
Cheers Val
Neulasta Hi Jane
I was put on the Neulasta injections for the last of my 3 taxoteres after ending up neutropenic on my first taxotere May 2006. I was quite poorly, had a count of 0.01 and a temp of 39 and was in hospital for 5 days.
My Onc advised that each injection cost £1000 but considering my Herceptin and Taxotere were roughly £1500 each + the cost of being in hospital for 5 days, it was worth the investment, she did not want my treatment being delayed.
I also think I have an on the ball Onc as I got Taxotere and Herceptin roughly 6 months prior to NICE official approval (apparently I was her first patient not to be on a trial).
Debbie
Hi Jane
I have recently finished chemo and had 4 AC and 4 taxotere paid for by BUPA. My onc suggested having accelerated AC, that is every 2 weeks instead of every 3 with neulasta the day after chemo to keep the white blood count up. Each shot of neulasta cost close to £1000.
When I started taxotere I thought I would continue with neulasta as BUPA were prepared to pay for it but my onc said not to have it unless my WBC went too low. Fortunately all was ok so I didn’t need it.
Love Lollie x
Neulasta Hi Jane,
I started chemo last month and am taking part in a trial over here called TACT2. The trial has 4 arms and the arm you get is totally random and done buy a computer at the Royal Marsden. Anyway, I’m on arm 2 of the trial, where I have accelerated epi followed by standard CMF. In order to increase my bone marrow production so I can have the epi every 2 weeks rather than 3 I have the neulasta injection. I have this 24 hours after each epi and have had 3 so far. Apart from achy leg bones the following day I have found it to be wonderful. I certainly believe I have faired much better side effect wise when compared to the women that don’t have the neulasta.
I have 1 more epi to go then I am changing to CMF. I will not be given the neulasta on the CMF so am rather anxious as to how I will feel without it! Personally I have found the neulasta a godsend and I am not looking forward to having to stop it. I guess they feel there is no justfiable reason to give it to me on the CMF. Perhaps this is down to cost? I was shocked when they told me how much it cost!!
Take care,
Kelly
-x-
Hi Jane
I was due 6 cycles of FEC, but became Neutroprenic on cycles 1 & 4, with a neut count of 0.01 both times. I asked for the G-CSF injections after the first cycle, but my Onc would not entertain this and just reduced the dose for the next 3 cycles. Hence the second episode in hospital for another 10 days, all they did then was cancel any further chemo.
Lynn
Hi Jane Was wondering about this very issue this evening. Neulasta seems to be given as standard in the states. I have asked at my hospital about it and they do give it (according to bc nurse) though my onc said ‘no’ when I asked about likelihood of being given it. I am concerned as I picked up a potentially lethal infection at the end of my taxol treatment last year due to low bloods and compromised immune system. As I will certainly be having more chemo in the future, I don’t want to be shuffled off this mortal coil by a secondary infection.
I am curious to know also, how the costs relate. What price a blood transfusion and/or hospital stay and ensuing care versus one shot of neulasta?
Jenny.
Crucial issue This is such an important postcode and funding issue, particularly for people with aggressive cancer and/or mets who can ill afford secondary infections.
I finally persuaded my oncologist last night to give me neulasta but ONLY because I have private health insurance and the health insurance company will pay. In the Trust here apprarently patients never get it as standrad unles they have actually been hospitalised with an infection. My oncologist tries to avoid giving it to private patients because she thinks they shouldn’t get better treatment than the NHS offer. She may have a point and I do have some guilt abut my insurance, but I think in the NHS Trust I used to live I would have got neulasta as standard.
One shot of neulasta is expensive. I’ve seen various figures quoted…ranging from £400-£768 (found on net), to £1040, so yes it would be a huge expense for every chemo patient to get…but like Jenny I would like to see the comparative figures on costs of hospitals stays, transfusions, cost of delays in treatment, cost of emergeny ambulances to rush neutropenic patients to hospital, staff time…and then the stress levels on patients. I have felt really upset all weekend, not knowing whether I would get the injections…worrying about the impact of repeated delays in chemo (OK I know one 5 or 7 day delay won’t affect outcome ultimately, but several might…and right now my priority is maximising my well time)
When I contacted Breathrough on this issue earlier this year they weren’t intersted in taking it up as a national campaigning issue but said they would support people taking it up locally. I haven’t got the inclination to do that…I do think this is a national issue, which someone needs to be ‘fighting’ on our behalf.
I’m writing this while waiting for blood test results to see if my chemo can go ahead…if not I guess its sraight to the neulasta which my oncologist asurres me will definitely work.
Jane
Cost? Bah humbug! I hope your bloods were up Jane and you got your chemo as planned. I got the GCSF five day filigrastim injections on the NHS after being hospitalised for several days while neutrapenic. I know these are cheaper than the neulasta one shots you’ll be getting, but they did the job and I got through the rest of chemo without another episode although the joint pain they gave me was unreal. I don’t think cost should enter the discussion. It’s obvious patients should just get the treatment they need, when they need it. Otherwise, what earthly use is the NHS to anyone?
Thanks Bernie Yes neurophils up from 0.6 to 1.9 so I got the chemo but have been told I won’t get neulasta until after next half of the navelbine (I get the chemo on Day 1 and Day 8). Not convinced I shouldn’t have it after both bits of the cycle but nurse was insistent you only got neulasta once in the whole cycle. Of course I have bloods done before Day 8…so watch this space if they’re down agian.)
I know we shouldn’t compare one part of govt. policy with another…but I rage with the injustice of it all…I was misdignosed in the month that the UK and USA inavded Iraq. My personal horor with cancer has run parrallel with the much bigger and ghastlier and costlier horror of Iraq. No expense spared there, but cancer patients and every other kind of patient has to argue the toss of peanuts to get the treatments we deserve. What sort of world is this?
Jane
Hi Jane Hi Jane,
If you think it’s the right thing to do I wonder if you could put a comment on my thread about the 198 women recalled at Inverclyde Royal Hospital.
Best wishes,
Sue
P.S. Good luck with the treatment
I was given neulasta on the NHS after asking for it - i was in hospital three times with infections. I gather the internal cost to our NHS hospital from something i saw is about £440 when I had it last year and obviously if it was used more it would be even cheaper. Compare that to the number of cheaper injections needed and there is not much of a difference in total cost. Certainly the view of the NHS haemotologist who treated me in hospital for neutropenia was that everyone should be on neulasta. The neulasta is better than the neupogen - haemotologist said appears to generate white cells when needed rather than indiscriminately.