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Is the 12 week Zoladex actually working !?

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User
Posted 12 May 2023 at 15:40

is this just my anxiety/paranoia related to my concern that the last Zoladex implant was not injected correctly and isn’t working - maybe paranoia but it is 6 weeks now and my hot flushed have more or less stopped and I note a slight return of libido (although virtually no erections) and my muscle aches are almost gone. OK seems a fast recovery after only 7 months of ADT (or 9 months counting the Bicalutimide!) 


 


Just before the last Zoladex my PSA was 0.01 and 3 weeks later after the implant it was 0.05 equally my testosterone was 0.6 and is now 1.02. - seems odd only 21 days apart. 


 


I will ask for another test as those were different labs but given the chaos of the implant proceedings and the bleeding and the implant palpable only just below the skin (I am quite slim) I am very suspicious. All my previous 6 months has been 4 weekly and this was the first 12 week one  - supposedly for convenience but of course had it been 4 weeks I would have had another by now. 


 


What is the issue of having another implant now early to be sure - surely at my level of castration there is no extra impact (other than cost) on my as already very low testosterone state. Given my G9 and optimal treatment of RT and Zoladex for 2 years, I’m not exactly relaxed with the situation 

User
Posted 12 May 2023 at 17:00

I had a reversal of some side effects, libido and erections, and wondered if the Zoladex hadn't worked. My GP tested my Testosterone and PSA instantly when I expressed my concerns, and they were both fine, but that looks not to be the case with you. If you get another PSA and Testosterone test, it would be worth asking for Luteinising Hormone and FSH levels to be included too, which would indicate if the Zoladex is blocking their production in the pituitary gland. (It's Luteinising Hormone you care about as it triggers Testosterone production, but I usually see FSH measured too which triggers sperm production, which should also be switched off by the Zoladex.)


I don't know what the effect of Zoladex overdose is - because it's not usually patient administered, it doesn't happen often enough for there to be any data. There is a small risk of damage to the pituitary gland with any of the hormone therapy injections - I don't know if that risk might increase?


I guess if they're not happy to give you another one before that one expires, another option would be to go on to 150mg Bicalutamide until the next Zoladex is due. That would also be good for protecting from a Testosterone flare you might get restarting Zoladex.


Zoladex implants can in theory be removed (they show up on ultrasound, although in your case it seems to be obvious anyway), but that's probably only going to happen in the case of a severe allergic reaction.


I would also complain about the last one having been administered wrongly. Someone needs a lesson in doing it correctly.

Edited by member 12 May 2023 at 17:03  | Reason: Not specified

User
Posted 12 May 2023 at 23:48

Z is supposed to be injected subcutaneously, and if it's done correctly you should also be able to feel it below the skin at first, though I've found it less obvious after a month or so. I had the unfortunate experience of having the pellet installed intramuscularly [if that's a word] when the nurse who was administering it inserted the needle perpendicular to the skin, rather than at an angle. Getting it wrong is potentially dangerous if it's inserted too close to the belly button or if it goes right through into the abdominal cavity. I don't know it it would be possible to actually insert the Z within the skin, rather than under it. That might limit absorption but it would be pretty tricky to pull off.


When Z is injected into the muscle, rather than a fat layer, the release is faster so this is probably similar to an overdose. The experience was unpleasant. I suffered from nerve pain in my legs and my sleep was shocking for a couple of months [3 month Z injection]. 4 or 5 hours of sleep a night is no laughing matter and not great for the head. Maybe that's some sort of guide as to what you might expect if you were to be given an overdose.


I don't know if it's possible to insert a Z capsule in such a way that it doesn't release but your test results are certainly odd, so you're right to insist on follow up testing.


Jules

Edited by member 13 May 2023 at 00:01  | Reason: Not specified

User
Posted 13 May 2023 at 10:38
I think the first thing is to go back to the GP practice and ask them to check the records - was it definitely the 3 month dose or did they accidentally order and administer the one month dose again. At the same time, a testosterone test is needed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 May 2023 at 12:24

"Second if it is working is this a sign that I may have a more resistant PCa and this is not a good sign for length if remission."


No. Your testosterone has risen above castrate level which means the cancer has some food, albeit only a very small amount.


As you will know, medication recording errors are notifiable - the GP practice should investigate how the wrong dose was recorded last time and then, liaising with the pharmacy, confirm exactly what dose you were given this time. If they have made an error, they need to inform CQC but you could also do this if you are concerned that they won't.


Do you have a urology / oncology specialist nurse allocated to you by the hospital? If so, contact him / her to discuss next steps. If not, phone the consultant's secretary and ask for a telephone consultation.


In terms of efficacy, it does not seem that you are castrate-resistant / hormone independent at this point so no panic on that front. The issue is not that your PSA is rising because the cancer has learned to survive without testosterone - it is that your HT is not working effectively to keep the testosterone low. Usually, this necessitates adding bicalutimide but in your case, the suspicion that either you were given the wrong dose or it wasn't implanted correctly seems far more likely.

Edited by member 20 May 2023 at 12:26  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 12 May 2023 at 17:00

I had a reversal of some side effects, libido and erections, and wondered if the Zoladex hadn't worked. My GP tested my Testosterone and PSA instantly when I expressed my concerns, and they were both fine, but that looks not to be the case with you. If you get another PSA and Testosterone test, it would be worth asking for Luteinising Hormone and FSH levels to be included too, which would indicate if the Zoladex is blocking their production in the pituitary gland. (It's Luteinising Hormone you care about as it triggers Testosterone production, but I usually see FSH measured too which triggers sperm production, which should also be switched off by the Zoladex.)


I don't know what the effect of Zoladex overdose is - because it's not usually patient administered, it doesn't happen often enough for there to be any data. There is a small risk of damage to the pituitary gland with any of the hormone therapy injections - I don't know if that risk might increase?


I guess if they're not happy to give you another one before that one expires, another option would be to go on to 150mg Bicalutamide until the next Zoladex is due. That would also be good for protecting from a Testosterone flare you might get restarting Zoladex.


Zoladex implants can in theory be removed (they show up on ultrasound, although in your case it seems to be obvious anyway), but that's probably only going to happen in the case of a severe allergic reaction.


I would also complain about the last one having been administered wrongly. Someone needs a lesson in doing it correctly.

Edited by member 12 May 2023 at 17:03  | Reason: Not specified

User
Posted 12 May 2023 at 23:48

Z is supposed to be injected subcutaneously, and if it's done correctly you should also be able to feel it below the skin at first, though I've found it less obvious after a month or so. I had the unfortunate experience of having the pellet installed intramuscularly [if that's a word] when the nurse who was administering it inserted the needle perpendicular to the skin, rather than at an angle. Getting it wrong is potentially dangerous if it's inserted too close to the belly button or if it goes right through into the abdominal cavity. I don't know it it would be possible to actually insert the Z within the skin, rather than under it. That might limit absorption but it would be pretty tricky to pull off.


When Z is injected into the muscle, rather than a fat layer, the release is faster so this is probably similar to an overdose. The experience was unpleasant. I suffered from nerve pain in my legs and my sleep was shocking for a couple of months [3 month Z injection]. 4 or 5 hours of sleep a night is no laughing matter and not great for the head. Maybe that's some sort of guide as to what you might expect if you were to be given an overdose.


I don't know if it's possible to insert a Z capsule in such a way that it doesn't release but your test results are certainly odd, so you're right to insist on follow up testing.


Jules

Edited by member 13 May 2023 at 00:01  | Reason: Not specified

User
Posted 13 May 2023 at 10:38
I think the first thing is to go back to the GP practice and ask them to check the records - was it definitely the 3 month dose or did they accidentally order and administer the one month dose again. At the same time, a testosterone test is needed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 May 2023 at 11:26

Thanks for all above - Lyn I checked with GP record but unfortunately while it shows the 10.8 12 week implant so does the previous implant which wasn’t as it was the 4 weekly 3.6 (and I know as on that occasion I supplied it via a script I filled at the pharmacy) so much for records.


Also it is proving difficult to get them to do it as they wanted a consultation to discuss and that isn’t til 26th now nearly 8 weeks into this implant. Does not help that consultant said at 0.05 my PSA was well controlled 6 months post RT.


The question/anxiety I now have is two fold. First is a gap or low control and slight rise in testosterone and PSA compromising my linger term outcome given my G9 localised PCa and 24 month plan even if the next Zoladex works?


Second if it is working is this a sign that I may have a more resistant PCa and this is not a good sign for length if remission..


I guess the other issues are around whether actually for me the 4 week 3.6 version is more efficacious in controlling the PCa or does is a switch to an agonist worth looking at.


In the meantime I am waiting in limbo for a simple blood test - sometimes I wish I had control over my health budget as a lifetime as a disabled person (and psychologist - probably makes me a difficult patient) has been spent checking and explaining my individual health needs and ‘optimum’ not adequate care and treatment. 

Edited by member 20 May 2023 at 11:27  | Reason: Not specified

User
Posted 20 May 2023 at 12:24

"Second if it is working is this a sign that I may have a more resistant PCa and this is not a good sign for length if remission."


No. Your testosterone has risen above castrate level which means the cancer has some food, albeit only a very small amount.


As you will know, medication recording errors are notifiable - the GP practice should investigate how the wrong dose was recorded last time and then, liaising with the pharmacy, confirm exactly what dose you were given this time. If they have made an error, they need to inform CQC but you could also do this if you are concerned that they won't.


Do you have a urology / oncology specialist nurse allocated to you by the hospital? If so, contact him / her to discuss next steps. If not, phone the consultant's secretary and ask for a telephone consultation.


In terms of efficacy, it does not seem that you are castrate-resistant / hormone independent at this point so no panic on that front. The issue is not that your PSA is rising because the cancer has learned to survive without testosterone - it is that your HT is not working effectively to keep the testosterone low. Usually, this necessitates adding bicalutimide but in your case, the suspicion that either you were given the wrong dose or it wasn't implanted correctly seems far more likely.

Edited by member 20 May 2023 at 12:26  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 May 2023 at 12:40
I guess my anxiety:/panic is the time scale here and how much damage or impaired positive result if my treatment and longer term prognosis is/has been damaged by this. Quote a worry especially as the consultant says it’s well controlled! Monday I guess requires some more hassle. My oncology nurse is away until end of the month.
User
Posted 27 May 2023 at 11:44

I checked what the current castration lev is and note that I am between the lasted and previously accepted target for testosterone. Also checked my current LH and that is now 0.1 so I assume the Zoladex IS blocking that part of the pituitary. Just STILL! Awaiting the PSA retest. Also asked for FSH, not sure what the ideal is here but know there is debate if  it’s an indication of CV risk if better controlled as it’s lower on GnRH antagonists - just the have complete view. Bank Holiday and so results next Tuesday to talk through. 

User
Posted 27 May 2023 at 16:10

The pharmacy may also have a record of which dose they supplied. The expiry date and batch number should also be recorded in your medical record, and it may be possible to work back from those to find out the dose, but I wouldn't know how - the pharmacy probably would though.


There isn't a universally accepted castrate level for testosterone. 1.2nmol/L is commonly used in the context of the hormone therapy drugs, but values from 0.7 - 1.7nmol/L are used in other research projects.

 
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