Hello Jaydee-Jemm and thanks for posting

I am sorry to hear about your situation and appreciate what a difficult and disappointing time this must be for you and your wife

Unfortunately all new medicines have to go through a process of being licensed by the MHRA ( Medicines and Healthcare products Regulatory Authority) for use within the UK and then go through NICE ( National Institute for health and Care Excellence) for approval for use within the NHS. Drugs are usually licensed and approved for particular types and stages of diseases and can be in combination with other drugs.

This can of course become quite complicated as to which patients can or can't have access to medications.

From what I know about Durvulumab and biliary cancer this has only just been recently approved that you can view on the NICE website earlier this year. However it does seem that this is currently only approved in this capacity alongside other chemotherapy drugs and as a first line treatment. 

Sometimes oncologists will put a patient forward for consideration to the local health authority for funding for a drug if they feel it will be of benefit but as others have said this may be rejected due to budget limitations.

Without being involved in your care it is difficult to know where you may fit within these guidelines and therefore I do suggest having another discussion with your specialist to discuss this with them again. Ask if there is any way around this or are there any other options available for you.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Wishing you all the best

Naomi

Hello Jaydee-Jemm and thanks for posting

I am sorry to hear about your situation and appreciate what a difficult and disappointing time this must be for you and your wife

Unfortunately all new medicines have to go through a process of being licensed by the MHRA ( Medicines and Healthcare products Regulatory Authority) for use within the UK and then go through NICE ( National Institute for health and Care Excellence) for approval for use within the NHS. Drugs are usually licensed and approved for particular types and stages of diseases and can be in combination with other drugs.

This can of course become quite complicated as to which patients can or can't have access to medications.

From what I know about Durvulumab and biliary cancer this has only just been recently approved that you can view on the NICE website earlier this year. However it does seem that this is currently only approved in this capacity alongside other chemotherapy drugs and as a first line treatment. 

Sometimes oncologists will put a patient forward for consideration to the local health authority for funding for a drug if they feel it will be of benefit but as others have said this may be rejected due to budget limitations.

Without being involved in your care it is difficult to know where you may fit within these guidelines and therefore I do suggest having another discussion with your specialist to discuss this with them again. Ask if there is any way around this or are there any other options available for you.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Wishing you all the best

Naomi

Naomi 

I can't thank yopu enough, this is very helpful.  I am getting a second opinion in Manchester which is outside the alliance of Newcastle to see what they say.  

Thanks again

David

Very interested to know how you got on with this ? My father has been diagnosed about a month ago.. Sometimes people do crowdfunding to do things privately. Tough going.   Wishing you all the best

Thanks for your well wishes.

As a result of the visit to a hospital in Manchester I was offered a 3 week course of targeted radiotherapy, which concluded 2 weeks ago.  Just waiting for a scan now to determine results.  

Only advice I can offer is to stay positive and ask for alternative treatment all the time, there’s a saying “you don’t get if you don’t ask”. 

Funnily enough that's exactly what my dad has been offered. My dad seems exhausted. How are you feeling? Keep your pecker up. 

Hi Jaydee. How are you feeling now ? Has the radiotherapy helped at all ? Hope you're  recovering from its side effects.

My dad seems ok but is very tied and has developed a sensitivity to some foods like dairy and wheat.  He gets gas and pain when he eats them. Not very hungry either. Seems a lot better when he sticks to a cleaner diet with just fish and chicken in a soup consistency. Might be helpful.

Ps just realised I said he was diagnosEd a month ago I meant he was prescribed the treatment a month ago. Diagnosed in January. 

Only side affect was a little fatigue, thats all.  

Ah good to hear. Hope it works well. dad had diverticulosis anyway.