Radium 223 and Enzalutamide

Hi Folks,

I've finally found the answer. The hospital policy is to not give both concurrently. The consultant did not know this and gave me the wrong information. It has taken me all day to find this out. Surely someone in oncology should have known this.

Hello Skoda 

Thank you for that piece of information. The issue is there is no National Standard and every health authority has their own guidelines. Each Nation, England, Wales Scotland and Northern Ireland have different guidelines!!

There are guidelines on the NICE website (National Institute for Health and Care Excellence https://www.nice.org.uk/guidance

Best wishes - Brian.

Thank you Brian,

After thinking about it I'm wondering if the hospital is being ' economical with the truth'. The person I spoke to (whose attitude was very much, who do you think you are to question me)  stated that the hospital policy was not to have the two treatments together and that Enzalutamide was prescribed 'off label' so it would take several months to get permission to use it whilst I was having Radium 223 treatment. In short I could not have Enzalutamide - full stop!

Looking at the published research there seems to be a consensus that having the two together improves progression free survival.

I know that the treatments are both expensive and if it was a case of my getting the two or a small child being treated, it would be a no-brainer, but I've a feeling that I'm being fobbed off,  the hospital is behind the times with NICE guidelines or the cost is the key factor in making the decision. I'm tempted to write to the Betsi Cadwaladr Health Board, but would that be unhelpful or unfair?

Any thoughts anybody?

Merry Christmas and a Happy New Year to all in this club nobody wanted to join

Chris

Hello, I’m sorry I can’t help much with this as the NICE guidelines state that this treatment pathway is ‘in development’ - not very helpful. 

I see that you have published research as evidence to support your request. I suggest that, if you write to your Health Board, you should list this evidence. I also wonder whether you might, instead, consider writing to your MP but copy both your hospital trust and your health board in?

best of luck! 

Hello Skoda. The results do look good for the PEACE III trial based on the recently published papers. The difficulty is firstly getting NICE to review the information and issue their guidelines then getting the health authorities to accept them. I had a look to see if they were still recruiting for the trial which started in 2016 and ran for 8 years but the answer is no. Another difficulty could be that the cancer is becoming resistant to the hormone therapy and normally when this happens the second generation antiandrogens are stopped which is maybe why there was no prescription for you?

Hello Chris Skoda 

Thank you for your reply.

I am very much in agreement here with Worriedwife that you need to take this right to the Chairman of your hospital trust with a full timeline copied into your MP.

(as an aside I had an issue with Mrs Millibob's hospital treatment and having used the normal path PALS, Hospital Chairman etc my MP made such an impact that on visiting the hospital the next day - the staff ostracized me -the ward manager would not even come out of her office - but we got what we needed that day!!).

A little bit of polite self advocacy goes a long way.

Keep us in the loop - we are all here for you.

Best wishes - Brian.

Hi Skoda

I can’t add much more than has already been said but my OH has the misfortune of being with this Health board and trying to access triple therapy.

Initially an abrupt no and then another oncologist said ‘too much paperwork’.

I would write to the chair, chief executive, healthcare inspectorate wales and make a formal complaint. If you get nowhere then suggest the ombudsman. She managed to get them to agree to meet with us in October after upholding all but 1 of our complaints,  but I’m still awaiting their response!! 
sadly it seems the only way to get anything from this health board is to be famous & make a big donation to the cancer centre, 

Truly hope you get what you are entitled too. Xx