Miraculous Neulasta from now on - anyone else?

I got neuslesta for the last 3/4 of taxotere, my bloods had been fine with FEC then after 1st taxotere and herceptin I ended up in hospital in a terrible state with a neutrophil score of 0.01 and a temp hitting 39. I was also put on morphine drops for my throat and ulcers. By day 5 I was 0.6 and allowed home, the score was back to around 1.5 for number 2.

I was told the jabs cost £1200 (this was May 2006) but a lot cheaper than 5 days in hospital, at my time I was classed as a very expensive patient, my Onc had to to go before the HA board to get me special funding for Tax and herceptin as they were not approved for primary until Oct 06 so with nuelesta on top I didn’t come cheap. As far as I know here in Oxfordshire you will only get it if you fall really poorly on chemo and end up in hospital.

Debbie

Well this one opened a can of worms. The injustice frightens me.

Taxes in Finland are very high, of course, and with the medical treatment I have received over the years (hospitalisation with pre-eclampsia when pregnant and a caesarian, 2 weeks for an abdominal infection with multiple scans a couple of years ago, very cheap dental and everyday medical care, and now this); long, well-paid maternity leave; very cheap day-care for boychik and a virtual absence of private schooling because it’s superfluous; free university to attain my Masters degree and funded university for my doctoral studies - I guess I know better than most just why.

But inequality of treatment is something else again.

This small sample of experience provides pretty irrefutable evidence that Neulasta should be widely available (of course those of us getting it may grow an extra head five years down the line and then the others will be laughing) - and my old dad also pointed out that the drug companies are the ones who should be made accountable. Rotten bastar*s. As with all ‘successful’ research funding strategies - the high return they are getting on the current drug will be funding research into future successful money-spinners. But what do you do? You restrict the disgusting profits & fat dividends of the drug companies and their shareholders and they’ll turn to something less problematic - like armament manufacture.

I too think a petition or similar activism is called for - but then, I don’t think I could find the energy at this stage of treatment either, even if I were a Brit citizen or resident in the UK and eligible for involvement. My SIL works for Macmillan - I’m going to discuss it with her.

‘Best of British’ to all - M-L x

Well I’m in Somerset and I am getting Neulasta each session of TAC as a matter of course. I did have two infections following my mastectomy though, so perhaps they think I am more at risk of problems than normal. I had no idea that the injection cost so much though - amazing!

It does seem to me that some of the countries which receive this kind of care as routine are those where one pays higher taxes - a very touchy subject here in the UK. I have a friend who is a financial director for our PCT and I hear her side of the story. There just isn’t the money to go round.

Jenny

I feel really strongly about G-CSF, of which neluasta is the most expensive. There is such a postcode lottery around its use and I think it is qite iniquitous that so many people have to get very ill before it is prescribed.

I have private medical insurance and during my primary treatment in east London got neulasta after each of 6xAC and 4 taxotere. I was naive and thought it was just standard until I started using these boards. In that PCT I understand that it was relatively often used too on the NHS.

I am now in Winchester and still have private insurance but my oncologist was initially very resistant to letting me have it when I started treatment a year ago for regional recurrence. In this PCT its hardly ever available on NHS and my onc seemed to have some bnotion of saving my insurance co. money. However after one dose of navelbine my neutrophils were too low for tretament so I’ve been getting it ever since. Just done 6 cycles of carobplatin and gemzar and this cylce my neutrophils were too low for treatment even with neulasta (so treatment delayed a week.) I am lucky though never to have been hopsitlaised with neutropenia though goodness knows what would have happened if I were in NHS tretament here.

I think there needs to be research on the real costs/benefits of not using neulasta more routinely. PCTs can negotiate for bulk discounts on drug costs (I know this from the private hopsital I’m at and from my prIvate insurance invoices that the actual cost of neulasta is not as high as £1000.) Also what about the cotss of extra blood tests, hospitalisation of patients with neutropenia, not to mention quality of life issues for patients???

A couple fo years back I approached Breathrough Breast cancer about taking this up as a campaiging issue but they were reluctant though said they would support local campaigns. I do think that this is a local issue for PCTs, but how many of us have the energy to get involved? I wish the breast cancer charieties were more receptive to talking up these real issues of concern for patients…I want more from support than free advice on how to tie a headscarf.

Neupogen, by the way, is a cheaper version of neulasta but it involves daily injection for I think 5 days rather than a single injection.

Jane

Hi to all,
her we go again why is treatment so different from trust to trust. I spent ten weeks trying to get avastin by co payment and was told we cannot have a two tier system within the health service. There is a two tier system it is just the M.P.s wont admit it. I really do think whoever buys the drugs does not do a very good job they are not buying at the best prices. When I kicked up a fuss the drug company capped the price making it more affordable so in theory more available. I also feel we should put the breast cancer charities under more pressure to act for us. I am willing to help in anyway I can.

Love Debsxxx

I am having taxotere at the moment and I injection myself 24 hrs after chemo. I thought this was the norm.

Chrissie
x

Hi everyone ,
I am nr Manchester and have my treatment at the Christie. I was given Neulasta at the beginning of my last cycle as I had had delayed treatment the previous week. The whole thing was “organised” for me and I had not heard of it before. After the first day it made me feel very achey especially shoulder blades and all down my back and shivery-like the flu. Also got pain and swelling under all my jawline. pretty unpleasant on top of feeling generally unwell with lots of other minor ailments but now glad I had it.
I am informed I will have it this Sat =day 1 of 7th cycle. and again in my last cycle. (8).
I’m really glad as we managed to book a few days at the seaside as a treat to ourselves and to mark the end of chemo. If I had to delay again I really don’t think I would be well enough to go and would have to cancel.
My OH especially needs this treat as he has been the head cook/bottle washer and main support for months and he really deserves it.
Cheers to everyone on this sunny day,
Kay xx

I live in Cornwall and my consultant suggested that I have the neupogen injections after each Tac treatment.I’ve had 5 out of 6 sessions and my bloods have always been very good. This time though, I haven’t picked up like I normally do by mid 2nd/3rd week. My temp is up slightly to 37.3 but I haven’t got a fever or anything. It would be just my luck the next and last treatment will be postponed.

My consultant said each injection costs £70. Cheap at half the price I say!

As much as I agree that no doubt there is variation from one Trust to another, I wonder, though, if perhaps it is given as standard (or at least to anyone with a low white/neutrophil blood count) alongside a particular regime, i.e. AC & T, for example - certainly from what I have read on these forums Taxotere, and its derivatives, are especially harsh. The trial in which I am participating is (amongst other things) comparing the administration of a standard treatment of Epi-CMF every 3 weeks to the accelerated administration of Epi-CMF every 2 weeks with the additional administration of G-CSF - if it is given as standard alongside particular regimes, it may be that, in time, neulasta/neupogen will be given routinely too. Convinced anyone?

Naz

P.S. JaneRA, I lived in Winchester (and just outside in Stockbridge) for ten years - its brought back some good memories.

I suffered low white blood count whilst on a trial of weekly taxol and was not offered it. Chemo was deferred for a week and had my bloods not improved, I would have been given a blood transfusion.

Jenny

Just wondering if any of the mods had spotted this thread, as there was a suggestion that this should be a campaign issue. From what I’ve been reading from a quick google round, routine use of neulasta, as well as being clinically advantageous, would actually be cheaper because the incidence of hospitalisation is drastically reduced.

Hi all

JaneRA - thanks for your input on an earlier thread when I posted soon after my second cycle was postponed due to neuts of 0.5 - you advised me of Neulasta - I was ready to ‘knock at the door’ - well break it down actually when I attended a week later - in readiness for a fight to be given Neulasta - but what a surprise - it was there ready and waiting and has been ever since - even told yesterday that I would be given it again in three weeks following my last chemo in order to prevet infection and achieve good preparation for further slashing, sorry, surgery.

My neuts now hover around 2.0 to 3.0 so it’s done the trick. Yes the side effects appear within 24 hours - jaw and rib pain along with a bit of extra fluid retention on top of the overnight 5lb I carry following chemo - but these effects usually disappear within 48 hours - and I administer my own (work as a midwife - not as easy sticking a needle into oneself as it is other people - oops - meant in jest of course) but small prices to pay for the overall result.

I agree wholeheartedly that something needs to be done about this appalling postcode lottery. The distress that delay in chemo administration brings, not to mention the cost of potential hospitalisation far outweighs any financial cost for the drug itself.

Perhaps when all my intended treatment is over and I am back in the realms of ‘new normality’ by October (I hope) I will pick this up and try to run with it - somewhere - will post again nearer the time to see if anybody has time, inclination, or indeed fitness to run it with me.

Thanks to your all and good luck on your individual journeys.

Janey x

PS Do be preapred to break those doors down when you need to - or get somebody to advocate on your behalf - it may just help - those who shout loudest and all that!

Yes someone needs to run with this and campaign. Hope you can get it going Janey.

Oh and I’ve never had any side effects from neulasta…another plus

Jane

as you are collecting data

initially no neupogen

FEC 1 OK
FEC 2 OK
FEC 3 OK
couldnñt have FEC 4 - had neupogen - felt ILL
had FEC 4
couldnñt have TAX 1 - had neupogen - felt ILL
couldn´t have TAX 1 again - more neupogen - felt ILL
then had TAX 1 and they gave me neupogen for the second week

lets see what happens on TAX 2

I have the sort you take as injections over 5 days - DIY

love FB xxx

It’s great that there are some people here who are keen to do something, and thanks Janey A for suggesting involvement later in the year. Perhaps in the Autumn I could work with you?

JaneRA, your comments and insights are very helpful. I note you had previously contacted Breakthrough. I recently joined their campaigns section with the idea that once I’m through chemo I’ll begin to get involved. I’d love to do the Westminster Fly In next year. What exactly do you think they’d want from us in order for them to be less reluctant on this issue?

Regards

Gill

I would also be interested in joining this campaign. I feel strongly that both medical and quality of life issues are important when undergoing chemo.

My treatment should be over by Oct and hope to get more involved with campaigning issues. Not sure how to start getting involved so any suggestions welcome.

Trish

Hi Ladies,
I tend to be more of a follower than a leader but would be happy to lend my support to this campaign. I got Neulasta because I have private medical insurance but it should be available to everyone . I know it’s a cliche but some of the ladies going through this cr** disease are so brave - coping with disabled partners, elderly parents and sick children, as well as holding down a job and paying the mortgage. I really take my hat off to them and they shouldn’t have to worry about low white cells - especaially when there IS something that can be done about it.
cheers
caroline

Hi girls,
I have been on the government website and created a petition for us all to sign. It has to be checked and approved, but when I hear back from them I’ll give you the web address and you can start telling all your friends!
I don’t have time for a big campaign personally, but this is an easy way to make a small start.
It says:
‘We the undersigned petition the Prime Minister to make G-CSF treatment available to ALL breast cancer
patients undergoing chemotherapy who need it.
G-CSF drugs help the body to replace infection-fighting blood cells which are depleted by chemotherapy.
Without them patients can get very sick and have to be admitted to hospital for intravenous antibiotics, and chemotherapy treatment has to be postponed. Currently availability is a postcode lottery. The costs of in-patient treatment far outweigh the cost of the drugs.’
I hope you all agree with the wording.
I had neulasta as my chemo kept getting postponed last year (it took me 8 months to get 3 months’ worth of chemo into me!)
I managed to inject myself and I’m really needle-squeamish.
love Jacquie

Hi Jacksy

I’ve said on another thread that I don’t particularly think that No 10 petitions are effective in the least for this kind of issue.
In any case I’m not sure your proposed wording is accurate. I doubt any of us know the comparative costs of neulasta compared to in-patient tretament…and without this information (which is complciated) the petiiton simply looks amateuish. This is not an issue which the PM has any direct influence over…its an issue for individual PCTs.

Jane