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Zoladex misfire

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User
Posted 17 Oct 2021 at 04:59

As background, I've been on Zoladex for about a year and a half now, including the period before and after RT.

My most recent 10.8 shot appears to have missed the target, given the target is subcutaneous and for me in the stomach region. What happened was that the nurse who gave the injection inserted the needle at right angles to the skin, rather then obliquely. Unlike the previous 5 or 6 [sorry I'd have to do a count-back to be sure] shots, this one hurt sharply towards the end of the insertion and has either been intramuscular or possibly inter-abdominal. The clinic and the nurse agreed that they got it wrong and sent me off for an ultrasound to determine how deep the pellet [?] had gone. No luck, couldn't be sighted. In theory an intramuscular injection will release faster. An inter-abdominal injection could finish up moving around in the cavity according to the radiographer. Consequences, unknown.

In the month and a half since having the shot I've had exaggerated symptoms from the normal list, including difficulty sleeping and hot sweats [which had virtually disappeared before that]. Additionally, I've had nerve pain in both legs and some tingling in the ball/toe end of my feet. Fatigue is increased and decline in strength seemed to accelerate.

I'm posting this for two reasons:

1. is to warn others to be sure that the person who is about to give you one of these shots knows exactly what they're doing and is aware of possible consequences. The length and strength of a Zoladex needle makes it quite possible to go right through the abdominal wall and to pierce an intestine or even an artery [both have happened] with nasty consequences.

2. is to ask if anyone else has experience or knowledge of this event. Neither my oncologist or Astrazeneca could come up with anything.

 

Foot note: From all I've read here, I might well be able to go off Zoladex but I'll post more on that elsewhere, thanks.

 

 

User
Posted 17 Oct 2021 at 11:08
My last shot of Zoladex was given in unusual circumstances at right angles, which I knew too late was not the correct way. I could have done a better job myself but it was too late by then. Maybe it helped that I had more fat in the area than I should have had but there didn't seem to be any untoward consequences and my subsequent PSA was low. This injection was given just before my last fraction of RT in 2008. My PSA started to rise very gradually only two years after that, so I don't think that badly deposited pellet made a difference in my case.
Barry
User
Posted 17 Oct 2021 at 12:22

Thanks for the info. All my injections were given correctly by my GP. He said he intended getting other staff trained to do it, but clearly knew that this was a specialised injection.

Presumably you are now either overdosed or underdosed. My guess is that an overdose would have no adverse effects. zoladex blocks the production of testosterone completely you can't block it any further as it is already completely blocked by the regular dose. I doubt the ingredients would interact with any other biological function (I have no expertise in this).

If you are underdosed your testosterone will start to return for me that took about nine months after the last injection.

I would have thought the best action now would be to have another injection straight away, on the basis that I think an overdose could do no harm.

Please remember I have no medical knowledge or training these are just my thoughts. You have obviously done the right thing in contacting astra zeneca who will know more, but are probably constrained for risk of being sued by giving any advice outside of the licensed use of the drug.

Dave

User
Posted 19 Oct 2021 at 18:50
At one of my GP appts for Zoladex implant I had a locum doctor who hadn't carried out one of these implants before so I read out the instructions to him whilst he done the 'inserting' bit, all went well. I don't think I'd have had an issue doing it myself but got the impression that they didn't want to risk wasting the cost in case of error or for my own good. At the time I think Zoladex was more expensive whereas now think it's similar cost to prostap etc. I believe GPs at one time tried to swap to Prostap from Zoladex cos of cost although Oncos obviously disagreed.

I finished my 3 yrs of Zoladex summer 2018, did take a long while to get anywhere back to 'normal' (was on 2yrs Abiraterone, Enzalutimide, Prednisolone as well, part of trial).

Peter

User
Posted 13 Nov 2021 at 16:18
You need to discuss it before next week as they will probably need to order it in and ensure your appointment is with someone trained to do it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 22:35

Zoladex has to be injected subcutaneousley, basically into a fat layer so that's it's absorbtion is gradual over a month [it sounds as though you're getting the one month version, there's also a 3 month one].

A nurse should be able to do the job but I'd suggest you check beforehand that they have experience.The actual syringe is slightly unusual in that it has a safety sleeve [don't ask me why] and it's not a lot of fun if they get it wrong.

It doesn't act immediately, so don't be deceived. It will probably start to kick in after a week or so. Hormone suppression has slightly different effects for everyone but possibilities include hot sweats, poor sleep, loss of libido [and hair in various places] and fatigue. There's a pamphlet in the syringe container or you can simply google it to get a fuller list of potential issues. Some of these symptoms ease off or get easier to handle and you will possibly need to develop some strategies to handle them over time, particularly if you stay on HT after the RT. I'm about half way through a 3 year course of Zoladex and I'm ok with it, particularly after figuring out that a protein supplement helps immensely with fatigue.

User
Posted 13 Nov 2021 at 23:38

My GP surgery uses Zoladex. I asked why, and they said because it has the fewest injection site issues.

User
Posted 14 Nov 2021 at 01:07

Correct, bical for one to two weeks before first injection. And then continue for one to two weeks after that injection. No further bical required. It is just required the first time as your body gets used to starting zoladex.

Dave

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User
Posted 17 Oct 2021 at 11:08
My last shot of Zoladex was given in unusual circumstances at right angles, which I knew too late was not the correct way. I could have done a better job myself but it was too late by then. Maybe it helped that I had more fat in the area than I should have had but there didn't seem to be any untoward consequences and my subsequent PSA was low. This injection was given just before my last fraction of RT in 2008. My PSA started to rise very gradually only two years after that, so I don't think that badly deposited pellet made a difference in my case.
Barry
User
Posted 17 Oct 2021 at 12:22

Thanks for the info. All my injections were given correctly by my GP. He said he intended getting other staff trained to do it, but clearly knew that this was a specialised injection.

Presumably you are now either overdosed or underdosed. My guess is that an overdose would have no adverse effects. zoladex blocks the production of testosterone completely you can't block it any further as it is already completely blocked by the regular dose. I doubt the ingredients would interact with any other biological function (I have no expertise in this).

If you are underdosed your testosterone will start to return for me that took about nine months after the last injection.

I would have thought the best action now would be to have another injection straight away, on the basis that I think an overdose could do no harm.

Please remember I have no medical knowledge or training these are just my thoughts. You have obviously done the right thing in contacting astra zeneca who will know more, but are probably constrained for risk of being sued by giving any advice outside of the licensed use of the drug.

Dave

User
Posted 17 Oct 2021 at 13:24
I have had 3 injections of zoladox with the fourth in about 4 weeks. My doctor has done them all. No pain whatsover, althugh a bit of blood the second time for which he apologised and remembered last time. Testosterone undetecatble for the past 4 months.
User
Posted 17 Oct 2021 at 21:07

Thanks Dave and Barry.

At two months into the three month Zoladex cycle I'm about to have psa/testosterone tests to check for adverse effects from the shot.

Yes Dave, I agree with your point about not being able to lower testosterone any more than it already is. Given it apparently takes around 12 months for testosterone to build up after stopping Zoladex I actually wonder why we're given so much so frequently but that's another issue.

My impression has been, up to the two month mark, that there have been some unpleasant side effects but from a testosterone perspective there's seem to be no reason for that. Maybe Z does have some non-testosterone side effects?

On Astrazeneca fearing getting sued ... yes, that thought did cross my mind :-). They've insisted that an "adverse event" record should be logged by my GP. That's fine with me because having to do that will make it very clear to the clinic team that training is essential where administering these shots is involved. They've been direct and honest about the error, so I'm ok with their response. I've insisted that all my injections from now on should be given by my GP, who is incredibly careful, and they're fine with that.

Thank you all again. The wisdom contained in this forum is invaluable. The medical treatment I've received has been quite fantastic though by contrast the amount of information I've been given was minimal. Up until my RT the action was something of a blur but in the months that have followed there's time to get a bit of a grip on choices.

On my mind at the moment, do I shorten the Z treatment from 3 years to say 18 months? Last time round my psa was .03 and my  testosterone was actually zero at the first post-op test. My testes have shrunk to a fraction of their original size so I await the next round of results with excitement [perhaps]. I'm 74 so sexual performance is less important to me than it would be to some others here BUT being able to be physically active does matter to me, as a cyclist and runner, and from a general health perspective.

User
Posted 19 Oct 2021 at 00:24

I did fear getting a nurse who didn't know how to do it, although that never actually happened to me.

However, when COVID changes made it complicated trying to book the right day, I switched to doing my own Zoladex injections, and didn't have a problem with that. I never found the injection particularly painful, but even less so doing it myself.

As for training, reading the instruction leaflet (in each pack) tells you how to do it. The first time I did it, the nurse watched to check I was doing it right.

User
Posted 19 Oct 2021 at 00:33
Bloody hell Andy are you some kind of superman!
User
Posted 19 Oct 2021 at 05:01

Great work Andy.

The nurse who got mine wrong was reading the leaflet as she tested her skills. Not reading closely enough though. I think she might have been confused with diabetes injections which are given in a similar place, at right angles to the skin, but the needle is much shorter and there'd be next to no risk of inserting that one too far.

At this stage, a couple of months after the shot, I'm feeling a lot better. I'm pretty sure that excessive Zoladex does have extra side effects. The leg pain and tingling in the feet is mentioned somewhere in side effects you should see your Dr about but luckily it's gone.

PSA/testosterone tests in a couple of days.

Thanks everyone.

Edited by member 19 Oct 2021 at 05:48  | Reason: Not specified

User
Posted 19 Oct 2021 at 06:35

Originally Posted by: Online Community Member
Bloody hell Andy are you some kind of superman!

No. Diabetics inject their own insulin. Prostatectomy patients inject their own Heparin. Many here inject their own penises.

So the question is, why not do your own Zoladex, particularly if on it for a while or life-long?

User
Posted 19 Oct 2021 at 07:43
I have done my dick, I have just finished 28 heparin for a new hip.

A Big fat needle and sub cutaneous sounds a bit technical but I guess I worm my sheep with subcutaneous Invermectin and it's quite satisfying when you get the "pop" as the needle just penetrates the hide and you know it's in the right place!

Perhaps we should put Covid and flu jabs in the post for self admin too?

User
Posted 19 Oct 2021 at 08:36

Andy, I've just read you detailed and clearly laid out profile/diary of treatment. Thanks, I must improve on my own profile here in case it's useful to others

Aside from the brachytherapy, my cancer has been similar to yours and I've only got 3 injections to go until the 18 month mark. Depending on psa levels I look forward to calling that an end to Zoladex.

 

User
Posted 19 Oct 2021 at 18:50
At one of my GP appts for Zoladex implant I had a locum doctor who hadn't carried out one of these implants before so I read out the instructions to him whilst he done the 'inserting' bit, all went well. I don't think I'd have had an issue doing it myself but got the impression that they didn't want to risk wasting the cost in case of error or for my own good. At the time I think Zoladex was more expensive whereas now think it's similar cost to prostap etc. I believe GPs at one time tried to swap to Prostap from Zoladex cos of cost although Oncos obviously disagreed.

I finished my 3 yrs of Zoladex summer 2018, did take a long while to get anywhere back to 'normal' (was on 2yrs Abiraterone, Enzalutimide, Prednisolone as well, part of trial).

Peter

User
Posted 13 Nov 2021 at 15:35

I'm due to have the 1st Zoladex (of 4) injection next week prior to RT. GP and Urol have given me no info on choices or side effects.... Can it be done in the arm or is there another drug for this? What are the side effect/problems with Zoladex? Reading comments it all sounds mildly unpleasant and not sure it should be done by the gp surgery nurse?

Thanks

User
Posted 13 Nov 2021 at 15:56
Zoladex has to be injected into the abdomen. There is another hormone therapy - Prostap- which can be given in the arm if necessary but is most often injected into the abdomen or thigh. Decapeptyl is usually injected into the buttock.

Side effects are very similar for all.

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

User
Posted 13 Nov 2021 at 16:05

Many thanks Lyn

The Uro has suggested any of these 3 so will discuss it with the clinic next week. 

User
Posted 13 Nov 2021 at 16:18
You need to discuss it before next week as they will probably need to order it in and ensure your appointment is with someone trained to do it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 22:35

Zoladex has to be injected subcutaneousley, basically into a fat layer so that's it's absorbtion is gradual over a month [it sounds as though you're getting the one month version, there's also a 3 month one].

A nurse should be able to do the job but I'd suggest you check beforehand that they have experience.The actual syringe is slightly unusual in that it has a safety sleeve [don't ask me why] and it's not a lot of fun if they get it wrong.

It doesn't act immediately, so don't be deceived. It will probably start to kick in after a week or so. Hormone suppression has slightly different effects for everyone but possibilities include hot sweats, poor sleep, loss of libido [and hair in various places] and fatigue. There's a pamphlet in the syringe container or you can simply google it to get a fuller list of potential issues. Some of these symptoms ease off or get easier to handle and you will possibly need to develop some strategies to handle them over time, particularly if you stay on HT after the RT. I'm about half way through a 3 year course of Zoladex and I'm ok with it, particularly after figuring out that a protein supplement helps immensely with fatigue.

User
Posted 13 Nov 2021 at 23:38

My GP surgery uses Zoladex. I asked why, and they said because it has the fewest injection site issues.

User
Posted 13 Nov 2021 at 23:43

Originally Posted by: Online Community Member

I'm due to have the 1st Zoladex (of 4) injection next week prior to RT. GP and Urol have given me no info on choices or side effects.... Can it be done in the arm or is there another drug for this? What are the side effect/problems with Zoladex? Reading comments it all sounds mildly unpleasant and not sure it should be done by the gp surgery nurse?

Thanks

Presumably you have already had a couple of weeks of bicalutimide tablets? If not, they won't be able to give you the first injection this week. 

Also, can you confirm that you are having 4 injections over a year and not just on HT for 4 months? 

 

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

User
Posted 13 Nov 2021 at 23:52

Hi

Yes, I've been taking 50mg since last Monday. The Onco has prescribed 4 x monthly injections.

The Macmillan nurse said to take the bical for 10 days after the 1st Zoladex injection only. Is this your understanding? I wasn't clear on what the Onco recommended and its not written down anywhere.. 

 

Thanks

User
Posted 14 Nov 2021 at 01:07

Correct, bical for one to two weeks before first injection. And then continue for one to two weeks after that injection. No further bical required. It is just required the first time as your body gets used to starting zoladex.

Dave

 
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