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Starting Decapeptyl

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User
Posted 20 Dec 2020 at 21:49

I had my first three month injection of Decapeptyl SR 11.25 mg on Friday, 18 December 2020.  Reading the leaflet that came with the drug and the PCUK Information Sheet on Hormone Therapy there seem to be some differences and contradictions, so wondering which is correct or whether I have not understood things correctly.  Advice and comments welcome!

The PCUK Information Sheet and the leaflet that came with the drug both describe Decapeptyl and as the tradename for triptorelin.

The PCUK Information sheet describes it as a LHRH agonist and states that I'll be give a short course of anti-androgen tablets to stop problems caused by the surge in testosterone.  Prior to the injection I started a 28 course of Bicalutamide 50mg tablets.

However, the leaflet that accompanies the Decapeptyl states Triptorelin is a gonadotropin releasing hormone (GnRH) agonist.  THE PCUK Information sheet refers to GnRH antagonists and refers to only one of these being available in the UK at present, called degarelix, and it doesn't cause a surge in testosterone.  It also states these are used less often than LHRH agonists.

I have to admit all these medical terms make things difficult to understand (but one has to become familiar with them!) so it appears the medication is doing what PCUK describes as a LHRH agonist but it is described as GnHR.  I'm confused!  Can anyone throw any light on these different and contradictory definitions?  What are agonist and antagonists?

User
Posted 20 Dec 2020 at 23:01
Decapeptyl is a GnRH but it can cause a testosterone flare in the same way that LHRHs do. Not sure why PCUK is listing it as a LHRH rather than a GnRH.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Dec 2020 at 01:17

GnRH and LHRH are different names for exactly the same hormone.

GnRH = Gonadotripin Releasing Hormone (i.e. the hormone that releases Gonadotropins).

LHRH = Lutenising Hormone Releasing Hormone (i.e. the hormone that releases Lutenising Hormone).

Gonadotropin is the collective name for Lutenising Hormone and Follicle Stimulating Hormone (FSH). Since there is no hormone which releases just Lutenising Hormone, and the hormone in question releases both Lutenising Hormone and Follicle Stimulating Hormone, GnRH is arguably the more correct term.

If you want to know how these work, watch my lecture How Hormone Therapy Drugs Work. I explain the difference between agonists and antagonists, and why the agonists generate a testosterone flare and the antagonists don't.

Zoladex/Goserelin, Prostap/Luprorein, and Decapeptyl/Triptorelin are all GnRH Agonists.

Firmagon/Degarelix (and soon to appear, Orgovyx/Relugolix tablets) are GnRH Antagonists.

(A minor nit - we should really say they're GnRH-Receptor Agonists or Antagonists, but the -Receptor bit always gets abbreviated out unless you are reading a research paper.)

Edited by member 21 Dec 2020 at 01:21  | Reason: Not specified

User
Posted 21 Dec 2020 at 14:26

Response from Prostate Cancer UK - Health Information Team

It is unfortunately confusing terminology. It's true that LHRH and GnRH are the same thing, but for some reason the drugs are commonly referred to as LHRH agonists (e.g. Decapeptyl) and GnRH antagonists (degarelix) in the UK. We have to use the terms that men are likely to hear in the clinic. I imagine a decision was taken to refer to them in this way so that the names would be more distinct and easier to tell apart.

We don't think we'd be able to adopt a different naming convention, but we will make a note to look at whether we need to do a better job of explaining the differences between the two drug types next time the fact sheet is reviewed.

The accepted naming convention for these hormone therapy drugs isn't ideal. Unfortunately that's what we have to work with, but we'll certainly see if the explanation around it could be any clearer.

With regard to relugolix, it's only just been approved for use in the US and it doesn't seem to be on NICE's radar to appraise in prostate cancer yet. We wouldn't look to include information on it unless they decide to appraise it.

Anna Seward | Senior Health Information Officer

Edited by member 21 Dec 2020 at 14:27  | Reason: Not specified

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User
Posted 20 Dec 2020 at 23:01
Decapeptyl is a GnRH but it can cause a testosterone flare in the same way that LHRHs do. Not sure why PCUK is listing it as a LHRH rather than a GnRH.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Dec 2020 at 01:17

GnRH and LHRH are different names for exactly the same hormone.

GnRH = Gonadotripin Releasing Hormone (i.e. the hormone that releases Gonadotropins).

LHRH = Lutenising Hormone Releasing Hormone (i.e. the hormone that releases Lutenising Hormone).

Gonadotropin is the collective name for Lutenising Hormone and Follicle Stimulating Hormone (FSH). Since there is no hormone which releases just Lutenising Hormone, and the hormone in question releases both Lutenising Hormone and Follicle Stimulating Hormone, GnRH is arguably the more correct term.

If you want to know how these work, watch my lecture How Hormone Therapy Drugs Work. I explain the difference between agonists and antagonists, and why the agonists generate a testosterone flare and the antagonists don't.

Zoladex/Goserelin, Prostap/Luprorein, and Decapeptyl/Triptorelin are all GnRH Agonists.

Firmagon/Degarelix (and soon to appear, Orgovyx/Relugolix tablets) are GnRH Antagonists.

(A minor nit - we should really say they're GnRH-Receptor Agonists or Antagonists, but the -Receptor bit always gets abbreviated out unless you are reading a research paper.)

Edited by member 21 Dec 2020 at 01:21  | Reason: Not specified

User
Posted 21 Dec 2020 at 09:59
Thanks Andy. Watched to video again and it all came together and made sense. I think the PCUK Information Sheet contradicts some of what you said and and what was stated in the leaflet I received with the drug, which resulted in my confusion. This section of the Information Sheet probably needs revising to remove the contradictions and provide some clarification. Thanks for explaining all so simply. John
User
Posted 21 Dec 2020 at 11:03

John, which PCUK information sheet are you referring to?

I looked at the PCUK Hormone therapy web page and the only issue I have with that is they refer to LHRH Agonists and GnRH Antagonists, which is inconsistent. It might also be useful if they said LHRH and GnRH are exactly the same thing, because patients will see both mentioned in different places, and assume they're different.

EDIT:
Found the information sheet in a Toolkit pack, and it's the same as above. I'll flag this up to PCUK. Also, their distinction between injections (GnRH Agonists/Antagonists) versus tablets (androgen blockers) will become invalid if/when Orgovyx/Relugolix tablets appear in the UK, which are a GnRH Antagonist).

Edited by member 21 Dec 2020 at 11:13  | Reason: Not specified

User
Posted 21 Dec 2020 at 12:52

Originally Posted by: Online Community Member

John, which PCUK information sheet are you referring to?

I looked at the PCUK Hormone therapy web page and the only issue I have with that is they refer to LHRH Agonists and GnRH Antagonists, which is inconsistent. It might also be useful if they said LHRH and GnRH are exactly the same thing, because patients will see both mentioned in different places, and assume they're different.

Yes, this is the Information Sheet I was referring to and the section that caused my confusion.  I would agree with your suggested changes, along with a short explanation of what agonists and antagonists are and how they work.

Thanks.  John

User
Posted 21 Dec 2020 at 14:26

Response from Prostate Cancer UK - Health Information Team

It is unfortunately confusing terminology. It's true that LHRH and GnRH are the same thing, but for some reason the drugs are commonly referred to as LHRH agonists (e.g. Decapeptyl) and GnRH antagonists (degarelix) in the UK. We have to use the terms that men are likely to hear in the clinic. I imagine a decision was taken to refer to them in this way so that the names would be more distinct and easier to tell apart.

We don't think we'd be able to adopt a different naming convention, but we will make a note to look at whether we need to do a better job of explaining the differences between the two drug types next time the fact sheet is reviewed.

The accepted naming convention for these hormone therapy drugs isn't ideal. Unfortunately that's what we have to work with, but we'll certainly see if the explanation around it could be any clearer.

With regard to relugolix, it's only just been approved for use in the US and it doesn't seem to be on NICE's radar to appraise in prostate cancer yet. We wouldn't look to include information on it unless they decide to appraise it.

Anna Seward | Senior Health Information Officer

Edited by member 21 Dec 2020 at 14:27  | Reason: Not specified

User
Posted 21 Dec 2020 at 16:04

Originally Posted by: Online Community Member
Yes, this is the Information Sheet I was referring to and the section that caused my confusion. I would agree with your suggested changes, along with a short explanation of what agonists and antagonists are and how they work.

I'm not sure that "a short explanation of what agonists and antagonists are and how they work" is possible. It's probably about 15 minutes of my lecture, and I don't think I could have simplified it any further.

I think all that's necessary to say is:

a) LHRH and GnRH are simply different names for the same thing.

b) GnRH Agonists generate a testosterone flare, and GnRH Antagonists don't.

If you want to dive in deeper, then you need to look at my lecture or some other resource (although I never found anywhere else that explains it, which is why I put that lecture together).

 

I'll throw in another tidbit of information for anyone using Estradiol patches on the PATCH trial, another form of hormone therapy which instead uses female/estrogenic hormones to suppress testosterone. No one had noticed a testosterone flare with Estradiol when used in prostate cancer patients, but those looking at using Estradiol for treating COVID-19 patients found that it does generate a 4 hour testosterone flare. This is insignificant for a prostate cancer patient, but a 4 hour testosterone flare with a COVID-19 patient who's ill enough to be admitted to hospital could kill them. (This won't be an issue for anyone already on Estradiol patches.)

User
Posted 29 Dec 2020 at 21:23

Just found this video ( how hormone treatment works ) and have to say it is the single most informative thing I have seen in months of trawling. Thank you!

User
Posted 29 Dec 2020 at 21:53

Originally Posted by: Online Community Member

Response from Prostate Cancer UK - Health Information Team

It is unfortunately confusing terminology. It's true that LHRH and GnRH are the same thing, but for some reason the drugs are commonly referred to as LHRH agonists (e.g. Decapeptyl) and GnRH antagonists (degarelix) in the UK. We have to use the terms that men are likely to hear in the clinic. I imagine a decision was taken to refer to them in this way so that the names would be more distinct and easier to tell apart.

We don't think we'd be able to adopt a different naming convention, but we will make a note to look at whether we need to do a better job of explaining the differences between the two drug types next time the fact sheet is reviewed.

The accepted naming convention for these hormone therapy drugs isn't ideal. Unfortunately that's what we have to work with, but we'll certainly see if the explanation around it could be any clearer.

With regard to relugolix, it's only just been approved for use in the US and it doesn't seem to be on NICE's radar to appraise in prostate cancer yet. We wouldn't look to include information on it unless they decide to appraise it.

Anna Seward | Senior Health Information Officer

 

Thanks Anna. I think the issue is that on the PCUK info sheet, you refer to Decapeptyl as an LHRH but the patient leaflet issued with the prescription refers to it as a GnRH - meanwhile, the EMC website lists it as a GnRH and NICE helpfully refers to it as both depending on which page you are looking at! Surely, it would be better if PCUK were using the same language as Ipsen? 

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

User
Posted 30 Dec 2020 at 00:04

Originally Posted by: Online Community Member

Just found this video ( how hormone treatment works ) and have to say it is the single most informative thing I have seen in months of trawling. Thank you!

Thank you very much olefogey!

User
Posted 14 Sep 2022 at 09:04

Hi,

New member here (73yrs old) . Diagnosed with PC after a Turps  for BPH in 2016 but now my PSA is back up to 7.6.   Had a heart attack in 2002 and now the proud receiver of 15 stents and a quad bypass so a prosectomy is a no go. 

The Urology team have decided on Hormone Therapy  and then External Beam radiotherapy.   Started  the Bicalutamide last week and going for decapeptyl next week. 

 

Wanted to see the Andy video but the link now points to fresh air.  Is there a more up to date link and is it on Youtube.

 
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