I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Changing ADT mid-treatment

User
Posted 16 Feb 2024 at 19:38

 

Those of you who’ve been following my ‘journey’ will know about the many side effects I’ve had from Prostap 3, especially relating to joint problems.

Today at my Maggies Networking Group I brought up the subject, saying I was very concerned about the damage being done to my body from this drug. The Maggies Group Leader, who is ex Head CNS in Urology, suggested that I asked for a referral back to the Onco to explore the possibility of changing the ADT drug to maybe Decapetyl.

Has anyone else changed ADT mid-treatment and if so I would be very interested in knowing if it helped.

I mentioned the PATCH trial highlighted in another post but the Group lead had not heard about this.

Derek

User
Posted 17 Feb 2024 at 20:39

FFS! More snake oil; vulnerable people will read and believe this rubbish. It is simply not true that no one in NHS or private will support oestrogen treatment - Stilboestrol has been going for 70 years and the PATCHS trial has been running since 2007! No one has to conform with established treatment protocols - but anyone with incurable prostate cancer who refuses ADT and sticks their wife's estrogen patch on their arm is going to die a whole lot sooner than necessary, regardless of whether they have flaxseed in their cocoa.

Derek, if you are really interested in an alternative, ask your onco about Stilboestrol which is, at least, an approved treatment with years & years of data to evidence a) efficacy and b) safety. Unfortunately, moobs are n almost certain side effect.

Edited by member 17 Feb 2024 at 20:44  | Reason: Not specified

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

User
Posted 18 Feb 2024 at 15:21

Hi Derek, I was on zoladex for the entirety of my HT. I did not find HT too troublesome. I was in my mid 50s. 

It doesn't look like anyone has changed HT. I think you would make an interesting guinea pig for an experiment on changing HT. I can't see you have anything to lose by changing. I can imagine it will be a bit more bureaucracy for your oncologist so that may stop it happening.

The results of the experiment may guide future members if they find themselves in the same situation. It would be a long way short of a randomised control trial, so don't expect to get a Nobel prize for this research.

Dave

User
Posted 18 Feb 2024 at 16:29
Goalhanger on the forum has swapped between treatments because of side-effects and waning efficacy. I asked for Decapeptyl from the get-go after following another member on the forum. My Onco frowned but happily obliged. Maybe it’s more expensive like different PPI tablets. Anyway I’ve been really good on it to be fair , but after 3 yrs on it my knees ( like yours ) are becoming a bit tragic. Very sad my mobility is starting to noticeably suffer
User
Posted 19 Feb 2024 at 20:53

Zoladex, Prostap, Staladex, Decapeptyl, all have the same side effects which are indirectly due to switching off Testosterone, and not directly due to the drugs. Occasionally, one doesn't work for someone (as in, it doesn't sufficiently switch off Testosterone), and it might be necessary to switch. Very occasionally (I never came across a case), someone can be allergic to one of them, and need to change for that reason.

Firmagon/Degarelix although slightly different (GnRH-receptor antagonist rather than agonist), basically also does the same and has the same side effects, as does Relugolix/Orgovyx if it becomes available on the NHS.

As for the drug-specific side effects, other than occasionally not working or very occasionally generating an allergic reaction as mentioned above, the only significant difference is the injection site reaction, which is worse for 4-weekly Firmagon/Degarelix, followed by Decapeptyl and Prostap which are also both depot injections but not as bad as Firmagon/Degarelix, followed by Zoladex and Staladex which are implants and don't generally generate injection site reactions except occasional bruising, followed by Relugolix/Orgovyx which is a daily tablet.

Another option which is increasingly being used for time limited HT up to 2 years is 150mg Bicalutamide (daily tablet) by itself. That works completely differently and so its side effect profile is different, generally less significant except for breast gland growth which can usually be prevented by combining it with a low dose of Tamoxifen.

There was some mention of the estrogenic HT drugs. Diethyl Stilbestrol is a synthetic estrogen which was the first HT drug. It is still used occasionally as a last chance because occasionally it works when castrate resistant to everything else. However, life long use results in the death of a 1/3rd of those on it from thrombosis, because your liver cannot handle taking significant estrogen doses by mouth, so it would never be used as an up-front treatment nowadays. The PATCH trial uses Estradiol transdermal skin patches. This avoids the toxicity of taking estrogens by mouth since they don't do the "first pass through the liver" which is what makes taking estrogens by mouth toxic. The PATCH trial worked well for all those I know on it, but it involves much more monitoring and continual adjusting of numbers of patches, and I suspect that may make it unviable to roll out at scale. Also, it is more likely to cause breast gland growth, and Tamoxifen can't be used as it stops the Estradiol from blocking Testosterone. I suspect the way forward with Estradiol patches is to add them at a lower dose to the GnRH injections which I talked about with the PATCH principle investigator, but sadly this wasn't part of the trial.

Also, just to be absolutely clear, there is no supplement or food item you can consume which will come anywhere near the effect of HT. If there was a sufficiently powerful estrogen, it would be long term toxic in the same way Diethyl Stilbestrol is. It would also make men (and possibly women) sterile, and completely screw up pre-puberty children. There are no such safe supplements or food items. You might try eating foods high in flavonoids (a plant compound which acts as an estrogen in the body) combined with the GnRH hormone therapy medications to see if they help with side effects. (Not needed if you are on bicalutamide only, as you'll have plenty of estrogens.)

User
Posted 20 Feb 2024 at 00:07

Originally Posted by: Online Community Member
Hope your are doing ok and I’m glad you’re getting your testosterone back…I can only dream of the day when that happens😴

Thanks Derek. I hope your psa levels continue to drop and your onco. reckons you can ease off sometime before 3 years.

I remain convinced that these drugs, Zoladex in my case, have some side effects beyond what is caused by the loss of testosterone. I base that on two parts of my own experience 1) was when I was inadvertently given a "quick release" dose of Z in error. I've written about that several times here so I won't do the whole story again but it was a very unpleasant experience for a month or so. 2) was the fact that 3 months after the Z had stopped doing it's thing, but well before there was any sign of testosterone returning, I felt a hell of a lot better. My GP didn't believe me so I changed GPs.

The return of testosterone makes a huge difference but wasn't a simple matter of returning to some "normal" situation. After 2 [or more] years as a eunuch you become adapted to it in some ways and being a sexual being again takes some getting used to. On the physical side,I've taken to doing Park Runs [I believe they're international] because running with a whole lot of other people does motivate you to up your performance and it's inevitable that after 2 or 3 years of HT you'll have some muscle loss and fat gain.

I know the HT seems to last forever but you'll get there Derek and you won't know yourself, sort of 😀

Jules

 

 

Edited by member 20 Feb 2024 at 00:15  | Reason: Not specified

User
Posted 20 Feb 2024 at 19:09

The PATCH trial (Estradiol patches) doesn't work the same way a the injections or Bicalutamide.

The injections switch off Testosterone. The lack of Testosterone also switches off Estrogens, since in men, Estrogens are manufactured from Testosterone.

The Estradiol patches are an Estrogen, and these switch off Testosterone but you get to keep Estrogen (more than you'd normally have).

Some of the side effects (such as osteoporosis) are due to lack of Estrogens so those are avoided on Estradiol patches. Some others are significantly mitigated, such as hot flushes, fuzzy brain, fatigue.

Other side effects may be amplified, such as breast gland growth (and Tamoxifen can't be taken), female fat distribution.

As I hinted at before, I suspect the injections used with patches to add a little (rather than a lot) of Estrogens might give the best treatment and quality of life combination, but that wasn't trialed. On the other hand, they have found that using Bicalutamide alone is just as effective as injections in many cases of time-limited hormone therapy, and that has even fewer side effects (if used with low dose Tamoxifen), not to mention it actually strengthens bones more than baseline because it also increases Estrogen levels.

Show Most Thanked Posts
User
Posted 17 Feb 2024 at 09:01

Hi Derek 

The drug you mentioned also blocks estrogen it isn't an alternative just more of the same 

https://www.cancerresearchuk.org/about-cancer/treatment/drugs/triptorelin

The only alternative is estrogen by transdermal patches which they dont prescribe and they never will unless patients educate themselves and demand it 

 

User
Posted 17 Feb 2024 at 09:16

Originally Posted by: Online Community Member

Hi Derek 

The drug you mentioned also blocks estrogen it isn't an alternative just more of the same 

https://www.cancerresearchuk.org/about-cancer/treatment/drugs/triptorelin

The only alternative is estrogen by transdermal patches which they dont prescribe and they never will unless patients educate themselves and demand it 

 

Hi Lizz,

Thanks for the info. I brought this up at my Maggies Group and the Group Leader(who was an ex Head CNS in Urology) had not heard of the PATCH trial nor could believe that estrogen could block testosterone. I’ve now read the study and it’s very encouraging to see the results. I also see that some patients involved in the Stampede trail were put on this treatment. Also the fact that the side effects were significantly reduced contradicts the argument that it’s the lack of testosterone that causes the majority of side-effects.

I think I have to be careful in what I demand. My Onco is not the most empathetic character and might take exception to that. However I am going to do some more digging and try to find out more and someone in the medical profession who actually has some knowledge about this. I do however know some women who have had breast cancer and found that by changing drugs that it helped with the side-effects.

Thanks again,

Derek

 

User
Posted 17 Feb 2024 at 19:53

Hi Derek 

You won't find anyone in the medical profession either NHS or private that will advocate estrogen therapy for prostate cancer even though it works  they are all on the same page that reads ADT 

It seems we  have to conform if we don't we are ostracised yet I read recently that there are many millions of  Google searches for alternatives to ADT due to dissatisfaction and  side effects. so the tide may turn 

My best tip is to buy some organic  flaxseed oil from Sainsburys it is one of the top estrogenic  foods have a desert spoon per day I am  very sure you will get relief from this your wife could have it too

 

User
Posted 17 Feb 2024 at 20:39

FFS! More snake oil; vulnerable people will read and believe this rubbish. It is simply not true that no one in NHS or private will support oestrogen treatment - Stilboestrol has been going for 70 years and the PATCHS trial has been running since 2007! No one has to conform with established treatment protocols - but anyone with incurable prostate cancer who refuses ADT and sticks their wife's estrogen patch on their arm is going to die a whole lot sooner than necessary, regardless of whether they have flaxseed in their cocoa.

Derek, if you are really interested in an alternative, ask your onco about Stilboestrol which is, at least, an approved treatment with years & years of data to evidence a) efficacy and b) safety. Unfortunately, moobs are n almost certain side effect.

Edited by member 17 Feb 2024 at 20:44  | Reason: Not specified

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

User
Posted 18 Feb 2024 at 08:45

Originally Posted by: Online Community Member

FFS! More snake oil; vulnerable people will read and believe this rubbish. It is simply not true that no one in NHS or private will support oestrogen treatment - Stilboestrol has been going for 70 years and the PATCHS trial has been running since 2007! No one has to conform with established treatment protocols - but anyone with incurable prostate cancer who refuses ADT and sticks their wife's estrogen patch on their arm is going to die a whole lot sooner than necessary, regardless of whether they have flaxseed in their cocoa.

Derek, if you are really interested in an alternative, ask your onco about Stilboestrol which is, at least, an approved treatment with years & years of data to evidence a) efficacy and b) safety. Unfortunately, moobs are n almost certain side effect.

I am not giving advice to Deco or anyone regarding their medication - I am just recommending a food item which they sell in Sainsbury's alongside  olive oil - hardly snake oil ?

Is resveratol and curcumin snake oil in your book too ?

Btw didn't your husband stop ADT bc he couldn't stand it any longer ?

Edited by member 18 Feb 2024 at 08:53  | Reason: Add more info

User
Posted 18 Feb 2024 at 15:21

Hi Derek, I was on zoladex for the entirety of my HT. I did not find HT too troublesome. I was in my mid 50s. 

It doesn't look like anyone has changed HT. I think you would make an interesting guinea pig for an experiment on changing HT. I can't see you have anything to lose by changing. I can imagine it will be a bit more bureaucracy for your oncologist so that may stop it happening.

The results of the experiment may guide future members if they find themselves in the same situation. It would be a long way short of a randomised control trial, so don't expect to get a Nobel prize for this research.

Dave

User
Posted 18 Feb 2024 at 16:29
Goalhanger on the forum has swapped between treatments because of side-effects and waning efficacy. I asked for Decapeptyl from the get-go after following another member on the forum. My Onco frowned but happily obliged. Maybe it’s more expensive like different PPI tablets. Anyway I’ve been really good on it to be fair , but after 3 yrs on it my knees ( like yours ) are becoming a bit tragic. Very sad my mobility is starting to noticeably suffer
User
Posted 19 Feb 2024 at 00:36

Derek, how's your psa going? For your RT there was a preliminary suggestion that you  would have RT to the prostate, seminal vesicles and local lymph nodes but that was cut back to prostate only because of the risk of collateral damage. I'm left wondering if the reason your onco is insisting on 3 years HT relates to the reduced treatment plan. At the same time, if your psa goes very low and stays there, it's a good indication of successful treatment.

The brutal reality though, is that if they didn't get all of the cancer the first time around HT is not going to kill off anything that's left behind and 3 years is not going to get rid of something that 18 months didn't.

I hope someone can tell me I'm completely on the wrong track here but your treatment seems a little odd to me and I'm not sure you non-empathic onco is giving you the whole story.

Jules

Edited by member 19 Feb 2024 at 04:50  | Reason: Not specified

User
Posted 19 Feb 2024 at 07:29

Hi Jules,

My PSA is currently 0.1, down from 0.3 first test 6 months after RT finished, so still falling…it will be interesting to see whether it drops to udectable on my next test end of March. I don’t think it was down to my reduced treatment plan because I was told right from the start it would be 3 years. I think it was down to my diagnosis, PSA 36, Gleason 4+3, T3bN0M0.  I’m not sure however if they just give you the worst case scenario to start with and then give you a VERY pleasant surprise by stopping it early.

I think also the fact that down to delays in RT treatment due to the changing treatment plan(3 months!) meant I was on HT for 10 months before RT started, so have only been on HT for 10montha since it finished. Most people would have been on it for nearly 18 months post RT by now.

I do want to give myself the best chance of beating this cancer but I certainly don’t want to be on this drug ANY longer than absolutely necessary.

Hope your are doing ok and I’m glad you’re getting your testosterone back…I can only dream of the day when that happens😴

Derek

User
Posted 19 Feb 2024 at 13:48

Goalhanger on the forum has swapped between treatments because of side-effects and waning efficacy.

Yes, I was on Prostap in early days and it worked. When my PCa returned I tried Zoladex but it didn’t work as well so switched to Prostap - which didn’t work either . So Abi was added, and so I switched back to Zoladex with the Abi… 

Consultant was just try get a reaction in my body…. 

Phil

 

User
Posted 19 Feb 2024 at 20:53

Zoladex, Prostap, Staladex, Decapeptyl, all have the same side effects which are indirectly due to switching off Testosterone, and not directly due to the drugs. Occasionally, one doesn't work for someone (as in, it doesn't sufficiently switch off Testosterone), and it might be necessary to switch. Very occasionally (I never came across a case), someone can be allergic to one of them, and need to change for that reason.

Firmagon/Degarelix although slightly different (GnRH-receptor antagonist rather than agonist), basically also does the same and has the same side effects, as does Relugolix/Orgovyx if it becomes available on the NHS.

As for the drug-specific side effects, other than occasionally not working or very occasionally generating an allergic reaction as mentioned above, the only significant difference is the injection site reaction, which is worse for 4-weekly Firmagon/Degarelix, followed by Decapeptyl and Prostap which are also both depot injections but not as bad as Firmagon/Degarelix, followed by Zoladex and Staladex which are implants and don't generally generate injection site reactions except occasional bruising, followed by Relugolix/Orgovyx which is a daily tablet.

Another option which is increasingly being used for time limited HT up to 2 years is 150mg Bicalutamide (daily tablet) by itself. That works completely differently and so its side effect profile is different, generally less significant except for breast gland growth which can usually be prevented by combining it with a low dose of Tamoxifen.

There was some mention of the estrogenic HT drugs. Diethyl Stilbestrol is a synthetic estrogen which was the first HT drug. It is still used occasionally as a last chance because occasionally it works when castrate resistant to everything else. However, life long use results in the death of a 1/3rd of those on it from thrombosis, because your liver cannot handle taking significant estrogen doses by mouth, so it would never be used as an up-front treatment nowadays. The PATCH trial uses Estradiol transdermal skin patches. This avoids the toxicity of taking estrogens by mouth since they don't do the "first pass through the liver" which is what makes taking estrogens by mouth toxic. The PATCH trial worked well for all those I know on it, but it involves much more monitoring and continual adjusting of numbers of patches, and I suspect that may make it unviable to roll out at scale. Also, it is more likely to cause breast gland growth, and Tamoxifen can't be used as it stops the Estradiol from blocking Testosterone. I suspect the way forward with Estradiol patches is to add them at a lower dose to the GnRH injections which I talked about with the PATCH principle investigator, but sadly this wasn't part of the trial.

Also, just to be absolutely clear, there is no supplement or food item you can consume which will come anywhere near the effect of HT. If there was a sufficiently powerful estrogen, it would be long term toxic in the same way Diethyl Stilbestrol is. It would also make men (and possibly women) sterile, and completely screw up pre-puberty children. There are no such safe supplements or food items. You might try eating foods high in flavonoids (a plant compound which acts as an estrogen in the body) combined with the GnRH hormone therapy medications to see if they help with side effects. (Not needed if you are on bicalutamide only, as you'll have plenty of estrogens.)

User
Posted 19 Feb 2024 at 21:30

Thanks Andy as always for your VERY informative explanation, I really appreciate your view on this. 
What I don’t understand however is that all these different treatments have the effect of blocking testosterone in one way or another, so if it’s the lack of testosterone causing the side effects, why do side effects differ between treatments?

Edited by member 19 Feb 2024 at 21:40  | Reason: Not specified

User
Posted 20 Feb 2024 at 00:07

Originally Posted by: Online Community Member
Hope your are doing ok and I’m glad you’re getting your testosterone back…I can only dream of the day when that happens😴

Thanks Derek. I hope your psa levels continue to drop and your onco. reckons you can ease off sometime before 3 years.

I remain convinced that these drugs, Zoladex in my case, have some side effects beyond what is caused by the loss of testosterone. I base that on two parts of my own experience 1) was when I was inadvertently given a "quick release" dose of Z in error. I've written about that several times here so I won't do the whole story again but it was a very unpleasant experience for a month or so. 2) was the fact that 3 months after the Z had stopped doing it's thing, but well before there was any sign of testosterone returning, I felt a hell of a lot better. My GP didn't believe me so I changed GPs.

The return of testosterone makes a huge difference but wasn't a simple matter of returning to some "normal" situation. After 2 [or more] years as a eunuch you become adapted to it in some ways and being a sexual being again takes some getting used to. On the physical side,I've taken to doing Park Runs [I believe they're international] because running with a whole lot of other people does motivate you to up your performance and it's inevitable that after 2 or 3 years of HT you'll have some muscle loss and fat gain.

I know the HT seems to last forever but you'll get there Derek and you won't know yourself, sort of 😀

Jules

 

 

Edited by member 20 Feb 2024 at 00:15  | Reason: Not specified

User
Posted 20 Feb 2024 at 14:05

Originally Posted by: Online Community Member
What I don’t understand however is that all these different treatments have the effect of blocking testosterone in one way or another, so if it’s the lack of testosterone causing the side effects, why do side effects differ between treatments?

What different side effects?

(Bicalutamide alone obviously has different side effects because it doesn't switch off Testosterone or Estrogens, but just stops Testosterone and other Androgens from binding to Androgen Receptors.)

User
Posted 20 Feb 2024 at 16:55

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
What I don’t understand however is that all these different treatments have the effect of blocking testosterone in one way or another, so if it’s the lack of testosterone causing the side effects, why do side effects differ between treatments?

What different side effects?

(Bicalutamide alone obviously has different side effects because it doesn't switch off Testosterone or Estrogens, but just stops Testosterone and other Androgens from binding to Androgen Receptors.)

When I read through the results of the PATCH trial they were saying that the side effects of this treatment were far less severe than ADT. Does this work in the same way as Bicalutamide. Sorry for being so persistent but coming from a software background I just NEED to know why something happens😊

User
Posted 20 Feb 2024 at 19:09

The PATCH trial (Estradiol patches) doesn't work the same way a the injections or Bicalutamide.

The injections switch off Testosterone. The lack of Testosterone also switches off Estrogens, since in men, Estrogens are manufactured from Testosterone.

The Estradiol patches are an Estrogen, and these switch off Testosterone but you get to keep Estrogen (more than you'd normally have).

Some of the side effects (such as osteoporosis) are due to lack of Estrogens so those are avoided on Estradiol patches. Some others are significantly mitigated, such as hot flushes, fuzzy brain, fatigue.

Other side effects may be amplified, such as breast gland growth (and Tamoxifen can't be taken), female fat distribution.

As I hinted at before, I suspect the injections used with patches to add a little (rather than a lot) of Estrogens might give the best treatment and quality of life combination, but that wasn't trialed. On the other hand, they have found that using Bicalutamide alone is just as effective as injections in many cases of time-limited hormone therapy, and that has even fewer side effects (if used with low dose Tamoxifen), not to mention it actually strengthens bones more than baseline because it also increases Estrogen levels.

User
Posted 20 Feb 2024 at 20:22

Thanks again Andy👍

 
Forum Jump  
©2024 Prostate Cancer UK