Well I spent 5 days in the hospital from day 13 of my 1st chemo…it was awful… my mouth was so ulcerated I couldn’t eat for 3 days…fever 37-38.8 during that time…it was yuk. I went back to oncologist visit yesterday and they said I could not have nuelasta (not sure of spelling) from that clinic… i have to have some shots from day 5 after chemo for 7 days in a roll. After all my cannula’s messing up in the hospital and having yuk veins I am frantic… 7 shots week two??? I have cried all day. Why can some ppl get neulasta and others can’t??? I feel really bad today.
hope all of u are doing well…big hugs to all.
It’s all down to the local NHS finance committee. Write to your MP.
Hi , have just read your message. I only heard about Neulasta from this site, nobody mentioned it at the hospital despite me being hospitalised twice with Neutrophinia ( dangerously low immune sytem) I was told side effects and costs outweighed the benefits . Last time I was admitted I knew the oncologist was in clinic that day , and asked him to come to the ward and visit me , so he he could see what was happening to me each time. It may be worth a try . Like Phoebe suggested I was getting ready to battle for provision of this drug , as I felt constant delay and reduction in chemo was not good. He has agreed to GCSF ( a cheaper version of Neulasta) but have had to have Hickman line removed as a result of bacteria in the line and need to have a new line fitted before then
Good luck, you have my full sympathy
very best wishes ruffy p
Hi LeeUk and Ruffyp
I was hospitalised like both of you as had infection and WBC was zero but after the first hospitalisation which was for a week I was given Neulasta in hospital and by the following day my WBC had gone up so I was allowed out of hospital. After that I was prescribed it automatically to be given as an injection the day after chemo.
I don’t understand how one NHS Trust can prescribe it and yet another can’t/won’t - it’s completely unfair. I also had infections due to the portacath which was the reason for my 3 hospitalisations and finally it was removed under general anaesthetic last week. The area seems to be healing now.
I would def do as Phoebe above has said and speak to your local MP. Good luck.
Cost and side effects outweight benefits… better to hear that than to be deaf.
how can cost and side effects be bunched up together? either it is a cost problem, or a side effect problem… or is it that cost is so important that they are blowing up the side effects to justify the dismissal??? if it was only a matter of side effects, nobody would need to bring up costs. Fishy, if you ask me.
It looks like neulasta can have some lung weakness side effects - I guess cumulated in specific cases. I am no doctor, but I would definitely interrogate any doctor giving the above line on what side effects he is talking about, in general and in my particular case.
I am having neulasta since the start, and it has been working extremely well to bring my blood stats up to the stars. No side effects I can report on.
I have been having Neulasta but still ended up in hospital last week with an infection and neutrophils of zero. It took several days for the count to rise enough for me to be allowed home. Also I had a low red cell count so I had to have a blood transfusion. So Neulasta is good but there are times when it doesn’t work! Some people say it costs Â£1000 for each injection and some say the cost has gone down to Â£600, either way a lot of money, which I suspect is the reason for it not being generally available. The side effects I have had are pains in my back and jaw which are easily dealt with by taking painkillers although it is usually not bad enough to bother.
All the best
Like AnneG I ended up in hospital too with no neutrophils and a white blood count of 0.05 which was dangerously low and apparently caused by an infection in my blood that was affecting the neulasta from working. After 5 days my neutrophils were 6 and count up to 12.5 so when it did work, it really worked!
I was never informed of any side effects and I tend to just have the chemo standard ones, if you can call anything about chemo standard.
I just wanted to say though that for those who can’t get neulasta I think it’s outrageous!! Completely unbelieveable! My GP wouldn’t give me zofran (odansetron) once as he said it was too expensive and I basically through a complete temper tantrum and told him he was talking complete rubbish and that I was the one going through the pain and needed it. Well, thats the polite version, but he changed his mind. Heck, if all else fails, why not!
Good luck and hope you get sorted!
I got Neulasta when I was on accelerated Epi as part of the TACT 2 Trial. I was given an injection 24 hours after each Epi. I was told at the time that it is v.v.v.expensive and thats why its not given routinely. Also, I stopped having it as soon as I switched to CMF.
Its a bl**dy shame that inevitably cost always comes into things!! This injection was awesome and I found it to be a godsend. My blood results were always incredible and I never got poorly with a high temp once. I know you can get the drug privately but it is soooooo expensive. Surely however it must cost less to give someone Neulasta than to have someone ill in hospital??
Take care and I hope you get it sorted,
what is neulasta and why do you need it? sorry but I haven’t heard of it.
Neulasta is a drug that stimulates bone marrow production. I had it while on was on accelerated epi as it meant my recovery period between treatments was shortened so they had to give me something to help my bloods pick up quicker. Others have it if they are poorly and maybe in hosp with a low neutrophil count,
WOW I did not realize HOW expensive Neulasta is. amazing. I just checked the numbers on the web, and it appears that going price is 3000 to 6000 DOLLARS per syringe…
I am glad my doc hasn’t even mentioned the cost, just decided it was a good thing for me to have - and it is! just amazing. How can less than an ounce of liquid cost that much?
Diamonds may be quite continental, but neulasta is a girl’s best friend…
I think its outrageous that it is down to cost as to whether you have the injection or not. I have had Neulasta because I am on the TACT2 trial. My chemo is accelerated and I have it every two weeks, I have the injection 24 hours after to promote bone marrow, thankfully it has worked for me as I have had my blood count levels high each time.
The first nurse that gave me the injection said it would cost my Â£700 to buy!!! Surely this is not a lot of money for the NHS compared to keeping you in hospital for a week. They pay more than that on cleaners and nurses etc. I would definately write to your MP.
Hope you are feeling better, sending lol, Tracy xxx
Just checked in the BNF cost is Â£714.24 per syringe!!!
The thing with neulasta is that it doesn’t create a survival advantage over neupogen. The benefit is that it is alot fewer jabs, which is nice, but I had neupogen for nine rounds of chemo and it was ok. These are jabs like any ordinary vaccine, not IV treatments or something where they need to find a vein. The veins in my arm were severely damaged by an IV antibiotic administration that went horribly wrong, but the neupogen wasn’t a problem, even though the visiting nurses were right cows and made me go into local GP for jabs and, get this, they would never come out to me, I had to go to them on a weekend. So much for ‘visiting’ nurses. Good thing they are just opposite the Tesco.
Relative prices found on North Devon NHS trust website:
Filgrastim inj: (G-CSF; NeupogenÂ®) 30million units/ml (300microgram/ml) [Â£68.41]; 48million units/ml (480microgram/ml) [Â£109.11]. Dose: for cytotoxic induced neutropenia, by sc injection or iv infusion 500,000 units/kg.
This means that someone weighing 60kg would be treated at a cost of roughly Â£350 pounds per cycle if they had five jabs per cycle like I did.
Pegfilgrastim inj: (NeulastaÂ®) 6mg/0.6ml [Â£714.24]. Dose: 6mg for each chemotherapy cycle.
So, for the same 60kg person, neulasta costs about twice as much as neupogen for no real clinical benefit.
Neulasta/neupogen should not be used unless necessary since some recent evidence indicates that it may increase the rate of treatment-related leukemia, although I doubt that I would have survived chemo without it. If you are getting it on a trial, it is probably a treatment that is known to be hard and I think the drugs probably don’t want the pfaff of monitoring whether everyone has had their full set of jabs, since non-compliance could mess up their results.
So, if women aren’t getting neupogen I would worry, but I don’t think not getting neulasta is that much of a scandal.
I offered to pay for nuelasta and they said… all or nothing…in other words… if u go private u must go private for everything not just medicine. I just hate having first week after chemo feeling so nervous and jittery, nauseated, then second week a jab everyday… I am just having a pity party this week. 1st chemo I felt good until day 13… this time I feel so yuk… for 3 days I have slept off and on and today day 4 I feel like I could eat nails! I feel so bad… I try to get up and be all normal but just walking up the steps makes me so tired.
Hope all of you are doing well. *big hug*
I had Neupogen when I was on chemo because of my low white cell count. I didn’t fancy hanging around for the nurse every day for this so I was given prefilled syringes which I did myself into the fatty area over my tummy. This is very easy and just a little scratch as the very small needle goes in. Worth thinking about if you don’t want to wait in all the time or don’t feel up to going to the clinic (which is not a good idea if you have a low white cell count, germs and all that).
I was told that my health trust recently brought in a new directive that neither neupogen or neulasta can be given to patients with secondaries, although those with primary bc can!!" It’s outrageous. i was told it was a decision made on financial grounds. They can get away with it because research has been done to prove that treatment with it produces better outcomes in primary bc. unfortunatly no-one has proved the same for secondary bc so they are not obliged to provide it! Just because no-one has done the research they don’t have to give it.
I started chemo in April and have had so many problems with my blood count that treatment kept getting delayed, then i changed to a new regime (from FECto Taxol/Herceptin) then had small weekly doses instead of three-weekly big ones. I should have been finished in August but now won’t be over until Christmas, as I was told yesterday that all the treatment ive had only counts as two cycles, so i need 4 more. And i thought that at least i was halfway through this new regime.
I was having the injections, then told i couldn’t have them any more, now I’m having them again?!
All the best to you all
I am very angry indeed about the neulasta/neupogen postcode lottery and really think one of the charities should take this up as a big campaognng issue. Recently I was told by someone at Breakthrough Breast Cnacer that they would support anyone carrying out a local campaign,. Georgina (used to be Kaim but has changed name and can’t remember it) is the person to contact.
I have privaate medical insurance and received neulasta as standard after 6 AC plus 4 taxotere and was never neutropenic. This was with a great onc. in east London in 2003/2004. I think he also used it with NHS patients when he could. When I moved to Winchester and recently got recurrence and new (grrh…) oncologist she said wouldn’t need neulasta on navelbine. Well I got neutropenic first time round and then had to argue the hell (she’s difficult) with onc. Insurance company more than happy to pay. All went smoothly though boods have remianed lowish’'than god I did get the neulasta (apart from onc’s snide remarks about costs each time I saw her) until yesterday on last chemo suddeny told I wouldn’t be getting neulasta ths round. I am run down, white and red blood cells low and I don’t want neutropenia…I want to be as well as I can so I can get a holiday couldnt have in the summer and come back refreshed (am staying on xeloda) Left angry mesage for consultant this morning… I have had to change plans for a London trip today to argue the toss for my neulasta injection. Roll om 9.00am
Neulasta is used as standard in US…Anyone know what happens in France or other parts of Europe?
Chriistine…is this new reserach…I have never seen any clinical reasons for not using neulasta…all are finance reaons. It cost money to hospitalise women, It costs money to do extra blood test to check and rechecl low bloods. And then there is the principle of patient care and well being. Yes neupogen maybe be chaeper and may be acceptable for some women…but others don’t like needles of any kind and phoibias are real and upsetting…and made worse when you’re already vulnerable)…and it probably costs money to adminsiter the extra injections if women can’t so theri own…have to use other nursing servces.
I wish I could get myself focused to organsise a campaign on neulasta/gcs-f generally, but for today I’m concentrating on my own latest battle…I’ve plenty of ranting speeches available ohow my likely early death wll save the state thousands in lost pensions, hospital costs when older…and thank you very much I’d like a few humdred pounds spent but my profitable provate insurance which I’m paying the priums for,spent on this injection which is proven to work for ME. When yu have stage 4 disaese every well day matters. Neulasta won’t prolong my survival…thats not its purpose when wehn you’re measuring out your days in months at a time each well day is a real real bonus. What prove quality of life? Wish me luck.
I am in Switzerland, and Neulasta has been offered to me as a matter of fact. I have a primary BC, and am doing 2 weeks cycles rather than three weeks, thanks to the neulasta.
Not sure in EU though…
Note that in the US it depends who is asking for meds, and on the person’s insurance.
Best of luck, Lil