Miraculous Neulasta from now on - anyone else?

Hi all,
Day 8 of first Tax I had a bit of a fever so hopped off to the hosp & stayed there four nights - a bit of overkill considering my temp never quite reached 38 & nor did my white cell count drop below 2.5. The doc reckoned she wouldn’t let me go home because I don’t rest. She’s right of course - unless there is an unappealing task I should do.

Other people here have mentioned stomach shots - a reference that has made me cringe in horror - so I wasn’t happy when approached by a nurse with that in mind on the first morning. But it’s a tiny thing, didn’t feel it. This was repeated the next 2 days.

I had my scheduled onc appointment this morning & he told me that the shots each represented 1/8 of a standard Neulasta shot - and they raised my white cell count to thirty in 3 days. High - because they are fighting the infection that took me to hosp in the first place.

From now on - for the remaining 5 treatments - I’ll get a single full strength the day after each treatment and shouldn’t experience a drop in white cell count at all. It’s a miracle! I asked him why it wasn’t standard and apparently each shot costs the good Finnish taxpayers something in the region of 1,300€. Users get a prescription filled for 3€. There are side effects of the aching variety as the gooey stuff inside the big bones works overtime - but it sounds worth it to me.

Who else is getting this, and what’s your opinion - pros & cons?

And, P.S., I type on a Finnish keyboard - do my messages come out in the UK full of hieroglyphs?

Cheers all, M-L x

Hi
I had a bad reaction to first taxotere and ended up in hospital for 4 days as neutrophils had dropped and had an infection.After that I had neulasta injection day after chemo. To me it was a blessing as no more hospital stays, and had no side affects.

Messages are ok

Take Care and have some rest,

Mary
x

hi emelle

i am taking part in a study here in the UK which means i get a neulastin shot the day after each epirubicin. i haven’t had any infection problems yet (2x epi so far) just aching bones as you say.i 'm pretty happy with that.

hope fully the trial will show that its of benefit and everyone will be able to have it

helen

Hi Emelle

I am like helenclare and have the shot 24hrs after Epi, I have had no side effects at all. Not that I am aware of anyway !!!

Good luck hun

P x

Hi Emelle

I too am receiving Neulasta 24 hours after each Epi which is part of the TACT2 trial. I have been fine all the way through.

This should be available to everyone … it clearly works and avoids many of the pitfalls associated with chemotherapy. Nobody should have to wait until there are problems before they receive this.

Take care.

Gill

I agree, Gill. I’m on the TACT 2 trial but drew the short straw and am on arm 1 - and unfortunately my WBC - and neutrophils in particular - have always been such that the chemo has had to be delayed on each occasion. I was meant to be having chemo tomorrow but neutrophils down to 0.5 and have to wait another week instead. I’m not sure if I would be given this boost if I wasn’t on the trial but I am now concerned that the effect of the treatment is compromised because it will exceed the 3 week routine.

Naz

Gillian you’re right it should be available to everyone. I gather it is v expensive - but so is having to deal with emergency admissions to hospital.
cheers
caroline

Sorry to hear that Naz. We have the technology … we have the drugs … we have the ability to adminster them … costs presumably prevent people like you from receiving them. It’s so wrong!!

How frustrating for you that you have to wait another week … I feel for you!

Take care

Gill

its another case of cost versus life saving treatment to a degree- it is so wrong

Doesn’t this remind us of the issues regards getting herceptin for those who benefit? This is a huge issue and needs to be tackled! Is this something BCC could be picking up for us?

It does and as one of those who get herceptin I feel lucky in a way but also think it is unfair, we pay national insurance all our working lives only to be told in some cases that the necessary treatment cant be given - it is disgusting

perhaps we should start a petition to the prime minister - not sure how to do it- but i am sure one of you does

I got Neulasta as part of private health care.Was told each shot cost over £1000.I had pain in jaw after the shots.My bloods were fine for 7/8 chemos[4xfec 4xtax]but after the last tax my wbc went to below 1 I had a fever and had 3 days in hospital with neutropenia.Goodness knows what would have happened without Neulasta.I was told It wasnt available on NHS and I wouldnt have been allowed to pay for it[not that I could have done].

Again, I agree - I really don’t object to paying tax and NI but I do get really angry when I read about - and experience - inequalities in health provision (as well as education…). I could go on - but I’m afraid I don’t have the energy or the mind to articulate myself at the moment - just the ability to rant! I just wonder whether the large pharmaceutical companies have a conscience - so that the cost to the NHS is reduced?

I asked about neulasta at the start of chemo and was told that under the NHS it would only be given if there was a recurrent probem with low neurophils and delayed chemo. I can’t remember cost but was told it was high. I’ve only had chemo delayed once due to streaming cold and low neurophils so don’t know how many delays you would need to be eligible. It does annoy me that private health care pays for it and I think the pharmaceuticals are funding it for the acelerated arm of the Tact 2 Trial. I agree, i think this is one area that needs tackled especially if it helps with quality of life issues whilst undergoing chemo.

I live in Knowsley which is the highest paying trust for cancer patients and as soon as I had an issue with neutrophils dropping I was given Neulasta and I am also on Herceptin I am not a private patient, alll on NHS.
As I said earlier it is wrong that I may be getting more than others, and we should all be the given the same treatment

Mary
x

I had a bad reaction to taxotere, and was admitted to hospital for four days with neutopenic sepsis. I was given neulasta shots in the hospital - and since being put back on fec have been told I would get pegylated neulasta shots after each one now - had the first one on 24th April - it kicked in 7 days later as it should - some bone pain but nothing that co-codamol didn’t shift. But I have felt so much better with this last chemo I wish I’d been given them all the way through!

I had neulasta injections after each cycle of epi as was on Tact 2 trial, although i didnt end up in hospital, i still managed to get infections with every cycle with a temp of 37.5 and was always on antibiotics , the injections gave me flu like symptoms each time too, so cant realy say it helped with my quality of life whilst on chemo. Guess i was unlucky .

It’s so interesting to read about the experiences we all have.

Mary suggests a petition … I have no idea how to set this up - does anyone? Another thought - we are all participating on a campaigning charity’s website. Might we not considier requesting BCC to take the inequalities of this treatment up as a cause? Personally I don’t have time to deal with this, but maybe someone does?

There’s a campaign panel with this information:

“If you would like further information on being a member of the campaign panel, please contact Chris Quince, Policy and Campaigns Assistant on 0207 960 3569, or email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%61%6d%70%61%69%67%6e%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%63%61%6d%70%61%69%67%6e%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>.”

Is it worth someone being involved? I haven’t followed through all the info on the website, but there may be other methods as well to get this issue picked up.

In Spain I administer it to my wife every day for 5 days after the Chemo, no question of costs and she has never had low blood counts