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low white blood count and funding for Neupogen

8 REPLIES 8
Dawnie321
Member

Re: low white blood count and funding for Neupogen

Just a quick update. My onc put in a request to the pct for funding and it was approved! I'm so relieved. I will be getting five injections of ecgf a week starting after Monday's chemo. This problem has really shown me what supporting friends and family I have. I had lots of offers to help with self funding.
Dawnie321
Member

Re: low white blood count and funding for Neupogen

Thanks ladies. Yes, I think filgrastim is the drug name and neupogen is a brand. From what I've read on the internet I don't think I can have the peg as it's long lasting and I'm on weekly chemo.
Buffy3, if you are getting it it's looking like it's not a national policy but a post code lottery. My brother in law, who is treated in a chemo suite in Northants for hemocromatosis, said he asked about their policy and they give it to everyone.
I'm seeing the onc on Friday. I'll ask how much it would cost.
Buffy3
Member

Re: low white blood count and funding for Neupogen

bump
Buffy3
Member

Re: low white blood count and funding for Neupogen

My post has disappeared...I am sure I posted on here earlier! Have just had round 6 of EC chemo so who knows what I have done! Anyway my last message said I had peg ( short for pegfilitram...sorry cant spell eithet). I am a secondary lady..bone mets...and was given peg when my wbc were low to boost them up. I was also given them when I didnt really need them by one registrar who gives them to patients whether they need them or not!! I am treated at the Marsden..sutton. Am not sure I am referring to same injections but I certainly had some to boost my wbc!
Hope this helps...lets see if it will upload now.

Mel xxx
Cressida
Member

Re: low white blood count and funding for Neupogen

Dawnie - I didn't realise that you are talking about Filgrastim. I just thought it might be worth raising that, as others might just know it as Filgrastim.

I don't have evidence of secondaries, but I am having secondary chemo as as result of a very aggressive TN cancer that just expanded on FEC-T. I am having Filgrastim after my Neuts crashed to 0.02. My understanding is that you have to demonstrate low neuts causing chemo delay before you can have it after the initial round of primary treatment (where you often get it as a precaution). However, it is likely that NHS trusts will all have different guidlines. I looked up the cost of a course of jabs - it seems to be £500 - £800+ each time according to Dr Google. Of course, you shouldn't believe everything Dr Google says, but thats a lot!

I hope that one of the secondary ladies will be able to help you soon, x
Dawnie321
Member

Re: low white blood count and funding for Neupogen

Thanks Sam I rang them yesterday. The lady suggested I see if anyone was in a similar situation.
Sam_BCC
Member

Re: low white blood count and funding for Neupogen

Hi Dawnie321

Whilst you wait for the other user to reply with their knowledge and experience it might help to talk things through with a member of staff on the BCC helpline. They are there to offer a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

tracyld
Member

Re: low white blood count and funding for Neupogen

Bumping to the top so that the secondary ladies see this . xxx
Dawnie321
Member

low white blood count and funding for Neupogen

Hi, I'm a newbie! I was diagnosed with primary BC in May 09 and had mastectomy, fec-t, radio, herceptin and tamoxifen. On New years eve I was diagnosed with liver and spine mets. I was put on weekly paclitaxol and three weekly herceptin but have been deferred three out of seven times despite having the dose reduced by 20% (and had to retest on the day to passed twice).
In 09 I had Neupogen when my count was low but the onc says I can't have it now because it's only funded for primary patients. He says I can self fund, but its "very expensive", or go on fortnightly chemo.
Does anyone know if this is a national rule? I am in Leicestershire.
I was so shocked I didn't think to ask how much "very expensive" is. Has anyone self funded for this drug? Or does anyone know how much we're talking about?
I really don't like the idea of reducing my treatment further.