NHS in England to offer darolutamide to prostate cancer patients

User

Posted 28 Nov 2022 at 17:59

According to the Times newspaper today which I cannot copy as it's behind a paywall is the above story.

The D drug will be offered to patients whose cancer has spread to other parts of body such as bones.

The D drug will be given in combination with other therapies and apparently blocks receptors in cancer cells which bind to androgen.This stops the cancer cells. multiplying.After completing chemo, patients will continue with original hormone therapy to help treatment work.

What the article is not clear and any views are sought please is whether patients like myself who have had failed chemo and other second line treatment (Enzo) in past this is a practicable treatment or we have missed the boat.

Regards

Norm

Edited by member 28 Nov 2022 at 18:11 | Reason: Typo

User

Posted 29 Nov 2022 at 10:02

Donchadh

No, you won’t unfortunately as you’ve already started your chemo. I asked if my OH could have the drug for his remaining 4 sessions and she did say his oncologist would write to NHS England to ‘plead our case’ but didn’t hold out much hope. Ultimately the license has a strict application criteria, still - if the oncologist does manage to get it for the remaining chemo sessions I will post here.

User

Posted 28 Nov 2022 at 20:26

Norm

I spoke to my OH’s oncology nurse today about this announcement and it seems that it can only be given alongside Docetaxel and ADT (as found by the ARASENS trial) if the patient has metastatic PCa and is also hormone receptive. NICE have not licensed it for any other use for metastatic PCa patients. Unfortunately, my OH has just had 2 sessions of chemo and has therefore missed the boat by 5 weeks! I fear you may also have the same problem but for different reasons.

User

Posted 29 Nov 2022 at 00:29

It has been available on the NHS to castrate-resistant (hormone independent) men with no mets since 2020, although based on our forum, very few men are being offered it. I guess that's because it is quite rare to be hormone-independent and still contained.

The new approval is for men who are hormone responsive and have mets - but will only be given in conjunction with docetaxel.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Nov 2022 at 09:39

That's a change indeed in who will be getting this drug. Dont think ill be valid for it although i am on docetaxel at present don't think I meet the other criteria. I'll ask oncology as have a phone appt this week anyway, thanks for the update and for bringing this to our attention.

User

Posted 05 Dec 2022 at 20:34

Ni I don't get it either. This drug just seems impossible to get on it.

User

Posted 06 Mar 2024 at 12:27

Lost track somewhat of where the Darolutamide conversation has gone, but after an initial (NICE rules) denial I just made the grade and have started on it. Initial reaction is that it adds somewhat to the usual side effects from Zoladex (now Leuprorelin) but since I am now on Darolutamide for ever or until it escapes from T3 to T4 I just have to put up with it. I am told that if I do go from T3 to T4 I will come off it and go onto real chemo.

Cheers, Otto

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User

Posted 28 Nov 2022 at 20:26

Unfortunately for metastasis this drug can only be give to those who have not had any spread. There's an article about it on the site https://prostatecanceruk.org/prostate-information/treatments/darolutamide

User

Posted 28 Nov 2022 at 20:26

Norm

User

Posted 28 Nov 2022 at 21:50

Is the licence for the drug that it has been given prior to chemo?

User

Posted 29 Nov 2022 at 00:29

The new approval is for men who are hormone responsive and have mets - but will only be given in conjunction with docetaxel.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Nov 2022 at 09:39

User

Posted 29 Nov 2022 at 10:02

Donchadh

User

Posted 29 Nov 2022 at 12:19

Guess I've missed the boat then plus I am not hormone independent. Who knows it's quite a challenge to get ones head round this drug as the goalposts seem to change

User

Posted 05 Dec 2022 at 19:30

I have tried to do some reading on what the eligibility criteria is. I do not understand why when one has already started chemo why that should restrict its use.

User

Posted 05 Dec 2022 at 19:47

From what Lyn has said above my understanding is that if you have commenced even one session of chemo.you have crossed the red line and become illegible for this approval of D.

Regards

Norm

User

Posted 05 Dec 2022 at 19:50

I still understand how having 2 sessions of chemo effects the licencing.

User

Posted 05 Dec 2022 at 20:34

Ni I don't get it either. This drug just seems impossible to get on it.

User

Posted 07 Dec 2022 at 08:20

Have you had any feedback from NHS England ?

User

Posted 07 Dec 2022 at 23:16

Gur007

We haven’t heard from the oncologist but we don’t hold out much hope. I asked the oncology nurse if we could get it privately (theoretically at least) and she said they are also limited by the license so it must be more than just the cost of it. It’s so frustrating as it can offer several more months of life.

User

Posted 08 Dec 2022 at 01:16

I think the point Ali is that it hasn't been tested on men who have mets and are already having chemo so there is no evidence that it would extend life in that scenario. A doctor can be struck off for prescribing meds that are not approved by NICE, or for prescribing outside the stated framework (except where the patient is on a trial). Technically, NICE hasn't changed the license - the media coverage was about funding and the approval is only temporary at the moment.

You could try contacting the Arasens trial team to see whether there is a plan for a phase 4 trial of daro after docetaxel in metastatic PCa?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Dec 2022 at 18:09

I believe that from your post the oncologist has applied for special funding and approval from NHS England drug in your circumstance. You never know!

User

Posted 13 Dec 2022 at 12:36

Yesterday I got my confirmation of metastatic PC after a lymph node biopsy and nuclear bone scan. They are putting me on Docetaxel + Darolutamide starting in Jan 23, as I need to have my hormone injection later this week first.

This was under Bupa cover from my work (which I assume they will authorise), and all the consultants so far have been via Bupa.

From what I read in this thread it seems like a course of action that I should go with given the chance. For me my cancer has spread to my leg, pelvis, spine (including right up by my neck) and a bunch of lymph nodes around the abdomen. I had no idea I had it, no real symptoms, it was just found on an MRI scan I was having for my gallbladder by chance. With no treatment they said I'd have about a year.

User

Posted 13 Dec 2022 at 12:57

Best wishes for successful treatment with this new drug.

Please keep us posted of your progress.

Kind Regards Norm

User

Posted 06 Mar 2024 at 12:27

Cheers, Otto

User

Posted 06 Mar 2024 at 19:43

Originally Posted by: Online Community Member

Best wishes for successful treatment with this new drug.

Please keep us posted of your progress.

Kind Regards Norm

Just Norm being norm.

Miss you Mr Brown.

Jamie.

User

Posted 16 Apr 2024 at 10:08

Hi all,

I wonder if there is anyone out there who is on darolutamide in the local severe not yet metastasized, "castration resistance" (Zoladex, Prostap etc not working so well), group and who can talk about the side effects. Mine are tearful zombie at least once a day 2-3 hours after taking the pills.

Thanks,

Otto

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