NHS UK Cancer Drug Network

Topic Made On: Sep 11, 2015 07:26am

Gender: Male
Posts: 98
On the 4th of September 2015 the UK National Cancer Drug Fund announced its decision to withdraw drugs for patients suffering from blood cancer by the 1st of November. 5 of the drugs related to CLL:

Ibrutinib for the treatment of relapsed or refractory chronic lymphatic leukaemia

Idelalisib plus rituximab for the treatment of relapsed chronic lymphatic leukaemia

Bendamustine for the treatment of patients with relapsed chronic lymphatic leukaemia

Ofatumumab for the treatment of relapsed or refractory chronic lymphatic leukaemia

There is more specific information on the Cancer Drug Network website:

Replied On: Sep 11, 2015 09:41am

Gender: Male
Posts: 5
Just for clarification please, as the NHS is devolved in Scotland, does this apply only in England or is it actually UK wide?

I'm asking because the title of this post and the link seem contradictory. (And I'm in Scotland as others will be too - and drugs, regimes and protocols may differ between the NHS services in the separate countries.)


Replied On: Sep 11, 2015 10:04am

Gender: Female
Posts: 10
Im on Rituximab and Idelalisib, what does this mean for me? Its a trial of use of first line treatment x

Replied On: Sep 11, 2015 01:42pm

Gender: Male
Posts: 2
I have just spoken to Royal Marsden nurse as I am on Ibutrinib. She said I will not be affected as I am already taking the drug provided I don't stop for more than a month.
This could happen because of surgery but hopefully not.
She remarked they are very disappointed at the decision.

Replied On: Sep 12, 2015 09:52am

Gender: Female
Posts: 12
Hi AyeWright

Wales was never included in the Cancer fund, I know as folk in Wales have had to move to England to get the treatment they needed. Suspect the same for Scotland so no change for us then

Replied On: Sep 13, 2015 05:27am

Gender: Male
Posts: 42
I've emailed my MP about this withdrawal of funding. I call on all UK resident forum members to do the same.
This government only has a small majority; therefore, if like me you also have a Tory MP - lobbying them on this vital issue, could bring about positive results.

Replied On: Sep 13, 2015 10:30am

Gender: Male
Posts: 2
What is so utterly shameful about this sad situation is that they (NHS) will no doubt continue to squander millions upon millions of pounds on the futile prescription of statins, which are worthless to the vast majority of users and for many cause more problems than they cure. And now we have PCSK9 inhibitors, designed to overcome the very side effects produced by statins that Big Pharma has always denied exist. These new drugs will undoubtedly be pushed all the harder to make up for their imminent losses on cancer drugs

Replied On: Sep 13, 2015 06:47pm

Gender: Female
Posts: 13
This is such terrible news.I will certainly be writing to my Mp.

Can someone confirm the current status of this drug in Wales? Is it available at all?

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