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User
Posted 14 Aug 2014 at 10:24

Hi Everyone.


 


I have been receiving Zoladex/Prostap for 30 months now and have done well on this treatment up until lately when my PSA started to rise (details on profile), my last blood test for PSA came back with 6.2 which has increased from 2.0 in June so therefor it looks time for the next stage of treatment is drawing close.


 


My understanding is the next tool out of the box will be Casadex which leads me to my question, now before I ask I am aware that my question may be like asking how long is a piece of string and therefor I am only seeking a general view or personal experience.


 


As stated above I have done well on current treatment for 30 months, my question is roughly how long can I expect/hope Casadex to be effective to treat this condition before moving onto the next line of defence, again I know this question is almost impossible to answer with any accurate time scale but any view would be welcome, also any information with regard to experience of taking Casadex would be welcome so I may have an understanding of what I could possibly expect.


 


Many Thanks


Peter. 

User
Posted 14 Aug 2014 at 12:05
Hi Peter,

Your situation struck me as having some similarities as mine so although I am not directly answering your question I have similar thoughts. I have bone met spread but no lymph node spread but have been stable on prostap since February 2012. My PSA has risen slowly since then but never doubled and I have no other symptoms. At last check up I was upto 20. We talked about adding casodex but decided to leave it partly because it was not a doubling and I had just had UTIs which may distort the figures. But I guess its not long away.

My consultant was keen to delay it as long as possible as casodex does seem to have its fair share of side effects - hot flushes, man boobs, fatigue etc - and I know some on here have not tolerated it at all though others have had minimal problems. My consultant is keen to help me continue work as long as I can and so agreed to delay using this for a while as he feels it will impact on working. So I have another four months at least before we take this action.

After casodex I think there are other similar ones but it could indicate castrate resistant PCa and therefore I guess we move to chemo and the great drugs now post chemo. I anticipate this to be my journey anyway but hope that casodex will give me some more time. As always how long is difficult to predict but prostap has kept me going for a longer time than anticipated so who knows.

Good luck!
User
Posted 14 Aug 2014 at 14:39
I hope you don't have to wait too long Peter, there is nothing worse than being left wondering.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Aug 2014 at 18:33

Hi Peter


I am in a similar position to you - just about to start Casodex. Not meant to say it, but I feel it is frightening. It's like the shock of diagnosis, then the treatments, then their failure to kill it off, then the easiness of hormones, then that rubbish moment when the PSA starts to rise and you know you are into the advanced stage. 


I wish you luck, lots of luck.


Dave

User
Posted 25 Aug 2014 at 20:05
Cath, what evidence is there that the testosterone is not feeding the cancer? If everyone is relying on the falling PSA I think I would be pushing for scans - the possibility that this is spreading and/or has become hormone refractory surely can't be discounted without a full picture.

Edited by member 26 Aug 2014 at 08:40  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 14 Aug 2014 at 12:05
Hi Peter,

Your situation struck me as having some similarities as mine so although I am not directly answering your question I have similar thoughts. I have bone met spread but no lymph node spread but have been stable on prostap since February 2012. My PSA has risen slowly since then but never doubled and I have no other symptoms. At last check up I was upto 20. We talked about adding casodex but decided to leave it partly because it was not a doubling and I had just had UTIs which may distort the figures. But I guess its not long away.

My consultant was keen to delay it as long as possible as casodex does seem to have its fair share of side effects - hot flushes, man boobs, fatigue etc - and I know some on here have not tolerated it at all though others have had minimal problems. My consultant is keen to help me continue work as long as I can and so agreed to delay using this for a while as he feels it will impact on working. So I have another four months at least before we take this action.

After casodex I think there are other similar ones but it could indicate castrate resistant PCa and therefore I guess we move to chemo and the great drugs now post chemo. I anticipate this to be my journey anyway but hope that casodex will give me some more time. As always how long is difficult to predict but prostap has kept me going for a longer time than anticipated so who knows.

Good luck!
User
Posted 14 Aug 2014 at 13:26
Hi Peter,
I am not sure that casodex will automatically be the next step. It really depends on whether the Prostap is actually failing. You don't mention on your profile but is your testosterone level also tested each time to make sure that you have reached and are maintaining castrate level? You will be able to see on Yorkhull's profile that his testosterone is monitored regularly and has stayed below 1 for a long time. If your T is around 0.7 or less and the PSA is still rising then it would appear the cancer has learnt to survive without testosterone. If your T is higher than that, then the Prostap isn't working as well as it should. What happens next - adding casodex, changing HT etc - is determined by which group you fall into I think.

Edited by member 14 Aug 2014 at 13:29  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Aug 2014 at 14:08
Thanks for your reply Lyn.

To answer your question I did in fact have my testosterone tested which they don't always do, however, it came back at 0.9 which they said was low, in fact they consider 1.5 or below to be castrate level???? however I have read on many occasions that castrate level is below 0.7, 0.69 to be precise so I tend to sway your way on that.



I have not yet seen my Consultant as my appointment for yesterday was cancelled and rescheduled for 17th Sept but I did phone my specialist nurse for my blood results and he informed me of the increase in PSA and said he would get an earlier appointment as the Consultant will want to see quickly and may decide to add Casodex to the treatment, at this moment I am awaiting a call to inform me of my appointment.



Thanks

Peter
User
Posted 14 Aug 2014 at 14:39
I hope you don't have to wait too long Peter, there is nothing worse than being left wondering.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Aug 2014 at 18:33

Hi Peter


I am in a similar position to you - just about to start Casodex. Not meant to say it, but I feel it is frightening. It's like the shock of diagnosis, then the treatments, then their failure to kill it off, then the easiness of hormones, then that rubbish moment when the PSA starts to rise and you know you are into the advanced stage. 


I wish you luck, lots of luck.


Dave

User
Posted 25 Aug 2014 at 10:56
Hi Peter,

Although my husband was in a very similar place to what you have described after being on Zoladex for about 28 months, we arranged to see his Onco when his PSA decided to treble and then double over a period of 8 weeks. His situation is somewhat complicated by acute heart failure, but all the options were discussed ... and then dismissed! Casodex had to be rejected as there were contr-indications with one of his other drugs. However, he has been taking Cyprostat for 2 years or more to rid him of hot flushes, and the decision was made to double up on that in the hopes it may have the same effect as Casodex.

As he was due a blood test within a few days, we delayed adding the extra tablet into the mix until then. As it happened, his PSA had almost halved .. all on its own! He started with the extra Cyprostat at that point and his last two blood tests have again shown a drop in PSA ... but his ALP is wandering upwards. His testosterone remains at less than 0.1 - where it has been for over 2 years. I have mentioned on here before that the body hair loss which occurred over the time he has been on HT suddenly reversed and is now back to pre-treatment level. No one, as yet, has come up with a sensible answer as to what is going on in that respect, other than it must be one of the 3 types of testosterone causing this - and yet not feeding the cancer.

Expect the unexpected!!

Cath
User
Posted 25 Aug 2014 at 20:05
Cath, what evidence is there that the testosterone is not feeding the cancer? If everyone is relying on the falling PSA I think I would be pushing for scans - the possibility that this is spreading and/or has become hormone refractory surely can't be discounted without a full picture.

Edited by member 26 Aug 2014 at 08:40  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Aug 2014 at 06:59
Thank You everyone for your replies.

I have had my appointment brought forward to the 4th Sept which is 3 weeks later than the original scheduled appointment, I don't expect there to be anymore than the usual chat and see you again in 12 weeks, my consultant seems to be focused on my PSA and has already told me that there wouldn't be any action with further treatment until it reaches around 20 as she didn't want to rush into the next stage to early?????????????.

Again I do tend to share your view Lyn that the remaining Testosterone after being reduced with HT could be trickle feeding the cancer and over a period of time there could be a significant advancement of spread and periodic scanning should be conducted to ascertain any change whilst there is any Testosterone present.

My Testosterone in the few tests I have had since diagnoses has ranged between 0.9 and 1.4 so there must be a little feeding going on, my PSA had been fairly stable at 0.5 up until last October and since then there has been 4 consecutive increases to the current reading of 6.2, while 6.2 is not a high figure it's concerning that it has been increasing for nearly a year and could take another year maybe to reach 20, in the meantime I can't help but wonder what's going on inside and this is where periodic scanning could answer those questions.

I find it very frustrating that too much emphasis is put on PSA readings as my consultant appears too, Ok I know it's regarded the best guide to Prostate Cancer activity but it is only a guide and the accuracy of PSA tests should be supported with scans in my opinion, I was diagnosed nearly 3 years ago at which time scans were done, since then apart from my 12 weekly jabs I have had diddly squat done, it's all been about PSA.

Just to add further to my rant my PSA at diagnosis was 18.2 which is quite low considering my gleason score is 4+5 all 16 cores positive, spread to my seminal glands and lymph nodes, my point is that even with a fairly low PSA there can still be some Cancer activity that may not necessarily significantly increase PSA level?????, so therefor my view is whilst waiting for my level to reach about 20 PSA what's going on inside??????????

OK I feel so better for having a winge it's always good to get it your chest "lol"

Thanks Peter.



User
Posted 26 Aug 2014 at 08:39
Sorry Peter, my last comments were to Cath rather than you - I will try to edit it to make this clearer. As your PSA is rising, you could say that this is a reliable indicator of what might be going on in your body; in Cath's case, the PSA is dropping.

I wonder sometimes if this threshold of 20 that some oncos refer to is simply about prudence .... accepting that the current regime is not working and that other treatments are needed is one thing, but you don't want your body to get used to (and then stop responding) each new regime too early.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Aug 2014 at 14:49

Peter,


Looking through my own treatment notes the matter of PSA monitoring and scans is something I've raised repeatedly. I've been on Prostap since July last year, joined Stampede control group last September and had radical RT during spring this year. I've had two bone scans, two pelvic MRI scans, two more limited MRI scans and a CT scan for RT planning, all clear of mets. PSA of 0.01 earlier this month is classified as undetectable. My oncol says that PSA will be the principal monitoring tool. I've also been advised to report any unusual pains, tiredness, lumps, weight change and the like. Oncol would intervene medically if PSA rises above about 1.0. Scans would also be taken at this point to validate PSA readings. I think that radical RT is the reason for a low intervention level.    


I keep my own log of PSA results and note weight changes. I also review all blood test results, not just PSA, with oncol at the 12-weekly Stampede reviews. I have not had a testosterone test, my low PSA scores deeming this unnecessary so I am advised. Similarly I have been advised that a DEXA test is not necessary at present. While I am satisfied with treatment by oncol I would not hesitate in obtaining a second opinion if PSA were to rise and intervention not occur.


Viv 


   

 
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