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Psa rise

User
Posted 14 Dec 2015 at 18:05
Hi. My dad had his first injection (hormone therapy) for prostate ca with bone spread in August. His psa went quickly down firm in the 200s to below zero. His psa has now risen to 24 and the consultant will repeat scans in January with a view to starting ?enzultamide. I am really upset that his psa has risen so quickly and feeling very low. Is this is bad as it seems? Had so hoped for good news before Christmas.

Edited by member 14 Dec 2015 at 22:02  | Reason: Not specified

User
Posted 18 Jan 2016 at 20:58

My husband Tony also started to lose his appetite when the cancer started to resist the hormones and his PSA went up again. He was also in pain at this time, which may have been something to do with it. Once he started on Ezalutamide, the pain went away and his appetite returned. He is now doing very well on the Enzalutamide, and eating like a horse.

User
Posted 27 Jan 2016 at 08:41

I've got my fingers crossed for you both, Marje and Qwerty, but just to give you some reassurance:

I saw my Onco a couple of weeks ago. I've been on Enzo for nearly 13 months. The first thing she said when she entered the room was that I was "boringly predictable". She was referring to the blood results.

I hope you are "boringly predictable" for at least as long as I have been. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 27 Jan 2016 at 09:29

Boringly predictable sounds good to me too.

Good luck Qwerty and piglet. In my thoughts as always

We can't control the winds - but we can adjust our sails
User
Posted 11 Feb 2016 at 19:09

Originally Posted by: Online Community Member
Hoping that my cancer is suitable for trial drug as its a 3rd stage trial and sounds reasonably promising. The drug is called galeterone but I have to have a cancer mutation called AR-V7 (sounds like a Blakes 7 character to me !). So now it's wait to see if I have that mutation otherwise no trials available for advanced PC if you have had docetaxl.
Therefore abbi or enzo only. Not saying the above is gospel but marsden quack said 4 hours ago.

Kev - your Onco knows best but, just in case he might of missed something, check these two out:

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-vt464-for-men-with-prostate-cancer-that-is-no-longer-controlled-with-hormone-therapy#undefined

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-olaparib-for-prostate-cancer-that-has-spread-and-got-worse-despite-hormone-therapy-and-chemotherapy-toparp

 Edit

VT464 is not for people who have had chemo. My bad.

Edited by member 11 Feb 2016 at 19:15  | Reason: Not specified

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User
Posted 14 Dec 2015 at 19:58

Sorry can't help with your query Qwerty but hope that somebody else will pick up that you are asking for help.

We can't control the winds - but we can adjust our sails
User
Posted 14 Dec 2015 at 21:41

It means that his cancer isn't particularly bothered by the normal hormone treatment and so something a bit stronger is needed. Enzo works very well for some men and it will be good to get another scan to see what's going on.

Do you have copies of the diagnosis letter? If so, could you check whether dad had a biopsy when he was first diagnosed and, if so, whether the letter said he had adenocarcinoma? Adeno is the most common kind but there are at least 27 types of prostate cancer. Some react to hormone treatment better than others so it would be useful to know which kind he has got.

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

User
Posted 14 Dec 2015 at 21:58
Hi, no copy of diagnosis letter, unfortunately. There was no biopsy, presumably because the bone scan showed mets. The fact that he initially seemed to respond very well to the injections gave us hope but feel so sad this has been for such a short time. I wish the response had been sustained for longer.
User
Posted 14 Dec 2015 at 23:36

Well hopefully enzo will have a better and more long-lasting impact. If not, it might be worth pushing for a late biopsy just to check that it is not one of the rarer types.

Concentrate for now on having a very special Christmas and storing up lots of happy family memories - worry about |January in January :-)

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

User
Posted 14 Dec 2015 at 23:42
Thank you

User
Posted 18 Jan 2016 at 20:12
Well, dad has had his 2nd bone scan and is going for an MRI tomorrow, results next Monday. His psa is rising after 4 months and an initial good response to hormone therapy so feeling anxious about what the scans will reveal. I have a question for men who have or have had high psa's - did you lose your appetite when it was high? Dad seems to have lost his again and feeling generally unwell and this is how he was feeling prior to starting treatment. Is it common to feel unwell with a high psa? Worried this is a bad sign.
User
Posted 18 Jan 2016 at 20:58

My husband Tony also started to lose his appetite when the cancer started to resist the hormones and his PSA went up again. He was also in pain at this time, which may have been something to do with it. Once he started on Ezalutamide, the pain went away and his appetite returned. He is now doing very well on the Enzalutamide, and eating like a horse.

User
Posted 26 Jan 2016 at 23:04

So dad has had his onco appointment to discuss latest scans and treatment plan. The scans don't show any further spread - bone mets as before and no soft tissue, so phew to that. But of course his psa has continued to rise markedly. He starts the enzalutamide tablets along with prednisolone tomorrow and the hormone injections are to continue. Feeling a mix of relief for the scans but still dread. I hope it works out. Thank you piglet for taking the time to telll me about your husband, it is encouraging to hear news of someone responding well to these drugs.

User
Posted 27 Jan 2016 at 08:28

Good to know that your Dad's treatment is progressing, qwerty. Tony was not given prednisolone, but I'm guessing that in your Dad's case this may be to build him up and increase his appetite.

One good thing about being on Enzalutamide is that your Dad will be carefully monitored, with tests before every new batch of pills, so any further irregularities or developments will be picked up quickly.

Fingers crossed for your Dad (and for Tony too, who has another blood test today for PSA etc).

Marje
aka piglet

Edited by member 27 Jan 2016 at 08:46  | Reason: Not specified

User
Posted 27 Jan 2016 at 08:41

I've got my fingers crossed for you both, Marje and Qwerty, but just to give you some reassurance:

I saw my Onco a couple of weeks ago. I've been on Enzo for nearly 13 months. The first thing she said when she entered the room was that I was "boringly predictable". She was referring to the blood results.

I hope you are "boringly predictable" for at least as long as I have been. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 27 Jan 2016 at 09:29

Boringly predictable sounds good to me too.

Good luck Qwerty and piglet. In my thoughts as always

We can't control the winds - but we can adjust our sails
User
Posted 28 Jan 2016 at 22:37

Brief update: after his 3rd month on Enza, Tony's PSA has crept down a little more. ALPS still coming down too. This means we can go on holiday as planned without worrying. Wooohooo, Canaries, here we come!
Marje

User
Posted 28 Jan 2016 at 23:25

Excellent news Marje. Enjoy the sun and sangria!

User
Posted 09 Feb 2016 at 18:34
Hello everyone, hope you are all bearing up and piglet, that you enjoyed a holiday. My dad has been on his new treatment for a couple of weeks ago and I made a mistake in saying he was on on enzalutamide, he is actually been prescribed arbiratone. Does anyone know why one is chosen over the other? Will enzalutamide be an option when the arb stops working? Like everyone else on here worrying about a loved one, it is hard. Some days the cancer feels in the background of life, I feel hopeful or read a positive thread on here. Other times I feel such hopelessness and feel like dad may be here for such a short time now. He is still or at least appears reasonably fit for an 82 year old. He is out and about most days, walking the dog or attending to farming matters - he's retired but still has land to look after, maintain etc. Any farming folks will understand! I guess the last few days I haven't felt terribly positive at all and I'm not sure why. Hoping and hoping the arb works. Wishing everyone the best.
User
Posted 09 Feb 2016 at 19:06

Qwerty,

I think the question of why Abiraterone rather than Enzalutamide is one for your Dad's Oncologist. I don't know the answer.

Regarding whether Enzo can be taken after Abi has stopped working, the answer is it depends on how long Abi has worked for. If it fails within 3 months then as I understand it Enzo can then be tried The same is true if Enzo is used and it fails within 3 months then Abi can be used.

However if Abi works for longer than 3 months then Enzo is no longer an option. They are both very expensive drugs so it's one shot only at them I'm afraid. Again the same holds true if Enzo is used first and works for longer than 3 months.

Be hopeful. Abi like Enzo can work for quite a long time.

Best wishes.

David

User
Posted 09 Feb 2016 at 19:21
Thank you David. It is good to hear from those who are doing well on the medications. I hope enzo continues to work for you for along time.
User
Posted 10 Feb 2016 at 17:10

David, I think you are mistaken about the three months issue. I've been on abiraterone for over two years and have been told by my oncologist that enzalutamide remains an option, as does chemo, when this fails to control the PCa. I think this may have changed recently with the NICE approval of enza. The two drugs work in different ways of course and are not necessarily interchangeable. Price negotiations are still ongoing with abiraterone, as I understand it and so it may get gain approval for more widespread use.

AC in Northants

User
Posted 10 Feb 2016 at 20:07

AC - I may be out of date, I certainly hope I am.

My source for my statement was:

The CDF panel concluded to give patients and clinicians the
choice of treatment with either enzalutamide or abiraterone prechemotherapy
but not both. The CDF panel was aware that
abiraterone required prednisolone and routine blood tests
whereas enzalutamide did not and it noted too that slightly
different patients were recruited to the two studies. It did not
conclude that there was any robust evidence to conclude that one
drug was better than the other (despite their different total
scores). The only exception to this rule of the CDF allowing either
enzalutamide or abiraterone would be if patients developed doselimiting
toxicity to one or other of these drugs within 3 months of
commencing treatment; in these uncommon situations, patients
would be allowed to switch from one drug to the other as long as
there was clearly no evidence of disease progression.

which can be found here:

https://www.england.nhs.uk/wp-content/uploads/2015/09/cdf-decision-summ-enzalutamide-prechemo-mcrpc.pdf

and here:

https://www.england.nhs.uk/wp-content/uploads/2015/09/cdf-decision-summ-abiraterone-prechemo-mcrpc.pdf

User
Posted 10 Feb 2016 at 23:19
So today I saw a doctor about a trial drug as zoladex is not enough anymore. I asked this very question and in my case as I had early chemo he said that there have been no studies on the preference of abiriterone over enzaclutimide for post chemo early PC. He said either was ok and that if one failed it was unlikely that the other would work. This is different to what I have read here before however I am probably one of the first to have early chemo on diagnosis of metastatic PC.

Hoping that my cancer is suitable for trial drug as its a 3rd stage trial and sounds reasonably promising. The drug is called galeterone but I have to have a cancer mutation called AR-V7 (sounds like a Blakes 7 character to me !). So now it's wait to see if I have that mutation otherwise no trials available for advanced PC if you have had docetaxl.

Therefore abbi or enzo only. Not saying the above is gospel but marsden quack said 4 hours ago.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 11 Feb 2016 at 10:40

It isn't a popular thing to write on here but the trial data showed that if Abbi fails then Enza will also fail, and vice versa. That is why NICE made the decision not to allow both ( as quoted above). There are people who find it hard to believe or accept, because Abbi and Enza work in very different ways but generally, the most important thing at that stage is for the oncologist to use all the information about a man's disease behaviour, progression, what worked well or not, etc to judge whether Abbi or Enza is going to be the best bet.

There are men on here who fought for one after the other, but I suspect this is an emotional rather than rational response ... the idea that there were two drugs to try and then suddenly the option of both was ripped away rather than any evidence that it would extend their life. Or perhaps not everyone reads the trial reports.

Alathays continues to campaign for it in Ireland but his disease is so atypical it would probably be worth the fight in his case!

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

User
Posted 11 Feb 2016 at 17:46

My understanding is the same as Lyn's.

The reason I'll be glad if Auld Codger is right is as follows.

I'm on Enzo. Sometime it will cease to be effective. My next stop is then likely to be chemo. Once I've had chemo, maybe just maybe, Abi could then be effective.

User
Posted 11 Feb 2016 at 19:09

Originally Posted by: Online Community Member
Hoping that my cancer is suitable for trial drug as its a 3rd stage trial and sounds reasonably promising. The drug is called galeterone but I have to have a cancer mutation called AR-V7 (sounds like a Blakes 7 character to me !). So now it's wait to see if I have that mutation otherwise no trials available for advanced PC if you have had docetaxl.
Therefore abbi or enzo only. Not saying the above is gospel but marsden quack said 4 hours ago.

Kev - your Onco knows best but, just in case he might of missed something, check these two out:

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-vt464-for-men-with-prostate-cancer-that-is-no-longer-controlled-with-hormone-therapy#undefined

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-olaparib-for-prostate-cancer-that-has-spread-and-got-worse-despite-hormone-therapy-and-chemotherapy-toparp

 Edit

VT464 is not for people who have had chemo. My bad.

Edited by member 11 Feb 2016 at 19:15  | Reason: Not specified

 
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