UK CLL Forum, UKCLLFORUM

cancer drugs fund

Topic Made On: Mar 16, 2015 08:03am
Pennycam

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hello , has anyone any experience of their doctor applying to cancer drugs fund for a treatment. Ibrutinib being the drug in question. how did it work out, how long to get an answer? Any pitfalls I should know about?

thanks in anticipation.




Replied On: Mar 17, 2015 10:44am
chandaj42

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Hi, I have been taking Ibrutinib since last September. As I recall, it was too late to apply for it under the drug fund. My trial is paid for by the manufacturer and was arranged there and then as I sat by my Consultant (they're not silly these drug manufacturers; they know it works and no doubt expect it to be taken up by the NHS at some time). You qualify under certain circumstances and in my case I relapsed from FC in 2006 and then from ofatumumab in 2010. I was initially diagnosed with cll in 1992 but have been told it is a low grade version of a low grade leukaemia.

Happy to report it has so far been a complete success! There were many pitfalls and drawbacks mentioned at the start but I have not experienced any problem, am feeling fine and my bloods are very good (Hb for instance has risen steadily to 16.5)

Inbrutinib is not considered as 'chemo'. I take just three pills per day- rather like taking aspirin or other daily drug Earlier sessions of chemo in past years have buggered (technical term) my immune system however to build up my immune system, I am now infusing immunoglobulin at home and, whilst others around me were dropping like flies this winter, with the usual winter flu and other ailments, I have sailed through.

Interestingly, they have found that Ibrutinib seems to normalise immunoglobulin levels so my Consultant is considering taking me off immunoglobulin infusions at some time. I have enquired if Ibrutinib also has a positive effect on other levels. People (i.e. Consultants are now referring to Inbrutinib as a 'wonder' drug)

I recently attended the WellMan clinic at my GP's surgery. Whether it's coincidence or down to Inbrutinib, my sugars, liver and kidney functions, blood pressure, platelets, psa, twc - you name it - were all fine. In fact, the nurse said, had it been a diabetic review, then she'd tell me not to bother coming again!

I read a comment recently posted by a cll researcher saying he was sure he'd be moved to research other ailments because of the world wide success in treating cll.

So, to sum up, very positive news for me and, I understand, others fortunate to be on Ibrutinib.

Hope these comments help.



Replied On: Mar 17, 2015 03:00pm
kestrel

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Hi like chandaj42 I too am on Ibrutinib with wonderful results!When I last saw my consultant a couple of months ago.He told me that NICE had now approved Ibrutinib and that in future my Ibrutinib prescrition would be direct from the NHS not as before via the drug company and this indeed is what has happened.If your consultant has considered this is the right treatment for you I don't understand why this has not happened??Good luck.Consult your consultant asap.I hope this is helpful,and wish you well.Regards Lee



Replied On: Mar 17, 2015 04:52pm
Admin

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Hi,I'm on Ibrutinib and the last time I saw my consultant it was told to me that NICE had approved the use of Ibutinib and my last prescription was via the NHS, not as previously paid and supplied for by the drug company.I therfor don't understand why if your consultant thinks that this is the treatment for you it's not fourth coming.Lee



Replied On: Mar 17, 2015 04:55pm
Admin

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Pennycam

My last round of chemo, 6 months of Bendamustine and Rituximab was provided for by the Cancer Drug Fund. My consultant had no problems at all in getting the funding.

My next treatment will be Ibrutinib which I also understand is now being funded by the NHS as NICE has approved.



Replied On: Mar 18, 2015 07:46pm
Pennycam

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thank you so very much for your responses. I am seeing the Dr on Tuesday who will hopefully be giving me the go ahead. I have had FCR which gave a short remission only- as well as that it really gave my bone marrow a good kicking and I was quire poorly. Hoping I will have better experiences with Ibutinib. Thank you again. Staying optimistic



Replied On: Mar 19, 2015 08:00am
Admin

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Hi Pennycam,
I too am on ibrutinib. My consultant applied to the cancer drugs fund a few weeks before christmas but then it recieved NICE approval so I was able to get it through the NHS. Ive been taking it since the end of January with few side effects. My platelets have risen though my hb is taking a while to recover and so I am having regular blood transfusions atm , hopefully this will come to an end soon.
I was diagnosed with CLL in 2005, treated with FCR in 2009. Developed Richters Transformation in 2012 and treated with CHOP an Ofatatumumab. The RT seems to have gone (hopefully) however following another bone marrow test it seems that the CLL infiltration in my bone marrow has greatky increased hence I am now on ibrutinib.
Hooe everything goes well with your treatment. Best wishes. Jackie.



Replied On: Mar 20, 2015 05:04pm
Pennycam

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thanks again and I hope everyone has a great response from whatever treatment they are on, lets all stay positive together.



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