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In fathers footsteps

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User
Posted 16 Dec 2017 at 07:34
Hi all, need a bit of advice on treatment after ht starts to be less effective.

I’m on bicalutimde and zolodex but my PSA has risen to 8.1. It has risen by almost a full point for the last 3 PSA tests.

I’m concerned about the rise because my dad has just been fast tracked home from hospital as his PCa has spread to his spine, pelvis, left leg, liver and some lymph nodes. Basically he is dying!

We have help from district nurses, Macmillan, and carers,

I always think to a period in my dads treatment, were his psa went from 0.1 to 72.0 in an eighteen month period. In that time nothing much was done an then one were told that he was being passed over to encology. He was put on enzalutimide, but his psa kept rising until he was taken of it because it was no longer effective. After a quick blast of radiotherapy he was sent home, PSA335.

All staff etc were great, but I can’t help thinking about this 18 month when nothing was done. I do not want to be my route to the inevitable.

Can anyone tell me what I.should be asking at this point in my own treatment.

Cheers

Transport

User
Posted 21 Dec 2017 at 20:59

For you: Are you only treated with hormone? No prostate operation or radiotherapy? Go for a Choline PET-CT in order to find where the active tumors are. PSA of 8 is not very high. The tumors can be controlled by radiotherapy, in particular proton therapy.

For your dad: Switch to Abiraterone, try Docetaxel if the general condition and blood cells are still ok. Chemoembolization can also be effective for the liver metastases.

User
Posted 07 Mar 2018 at 17:52

Transport, this is not a surgical case surely? You must see an oncologist to get a balanced view. There could be quite a choice of curative treatments available (including abiraterone, as I mentioned before, and clinical trials) to give you every chance of following your dad's example in longevity. BTW, I think 91.5 is a fantastic age to reach what ever gets you in the end. You should have good genes. Give them every chance!

AC

User
Posted 22 Dec 2017 at 03:14

Could be a case of ----- ---- -- where angles fear to tread! Advocacy for Proton Beam for PCa, which is not yet available in the UK but Safinamo mentions elsewhere as being available in Munich (which it is), leads me to think he/she may not be native to the UK., it's rules and protocols.  Furthermore ,the vast majority have their treatment on the NHS where you are exceedingly unlikely to have Proton Bean abroad agreed for PCa and even those with private insurance cover may not be able to claim this, so it would have to be self funded. Also, there are very few places in the UK where you can get the Choline PET/CT scan as yet. It also requires a cyclotron to produce the tracer and no UK hospital at present has one although 2 are in the offing.  (Clatterbride has a very small low powered one only able to treat eyes) so it has to be prepared off site and brought in specially for each patient very quickly as it has a very short half life.  The failure rate for the Choline tracer can be as much as 50%.  The first batch prepared for me was rejected as unsatisfactory and others members of this forum have experienced the same situation.

Edited by member 22 Dec 2017 at 16:49  | Reason: Not specified

Barry
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User
Posted 16 Dec 2017 at 15:40

Just bumping you TRANSPORT in case your question gets missed

We can't control the winds - but we can adjust our sails
User
Posted 16 Dec 2017 at 18:14

What do you mean by 'nothing was done'? Did he stay on the hormones or have no treatment at all in that time? It is hard to imagine an oncologist in this country allowing the PSA to rise that much so was your dad given choices and perhaps declined the hormones due to side effects? Or was he not being monitored with 3 monthly PSA tests in that 18 months? Understanding how it went wrong will help you to make sure you are never in that situation.

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

User
Posted 16 Dec 2017 at 19:27

Time for abiraterone, I think. Press for it without delay.

AC

User
Posted 16 Dec 2017 at 19:51
Originally Posted by: Online Community Member

Time for abiraterone, I think. Press for it without delay.

AC

???? Who, AC? The dad or the son? If you meant the dad, Abi is unlikely to be an option since Enzo has failed. It seems the dad is now on a palliative care route?

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

User
Posted 17 Dec 2017 at 17:27

Transport of course!

AC

User
Posted 21 Dec 2017 at 20:59

For you: Are you only treated with hormone? No prostate operation or radiotherapy? Go for a Choline PET-CT in order to find where the active tumors are. PSA of 8 is not very high. The tumors can be controlled by radiotherapy, in particular proton therapy.

For your dad: Switch to Abiraterone, try Docetaxel if the general condition and blood cells are still ok. Chemoembolization can also be effective for the liver metastases.

User
Posted 21 Dec 2017 at 22:31

Safinamo, who are you and what qualifies you to make such statements, unless you have people's medical records in front of you??? The poor man's father is on palliative care route and you are suggesting that other treatments might work. This is not responsible posting - perhaps you should have spent a few days getting to know the forum rather than posting these comments on so many different threads on your first day!

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

User
Posted 22 Dec 2017 at 03:14

Could be a case of ----- ---- -- where angles fear to tread! Advocacy for Proton Beam for PCa, which is not yet available in the UK but Safinamo mentions elsewhere as being available in Munich (which it is), leads me to think he/she may not be native to the UK., it's rules and protocols.  Furthermore ,the vast majority have their treatment on the NHS where you are exceedingly unlikely to have Proton Bean abroad agreed for PCa and even those with private insurance cover may not be able to claim this, so it would have to be self funded. Also, there are very few places in the UK where you can get the Choline PET/CT scan as yet. It also requires a cyclotron to produce the tracer and no UK hospital at present has one although 2 are in the offing.  (Clatterbride has a very small low powered one only able to treat eyes) so it has to be prepared off site and brought in specially for each patient very quickly as it has a very short half life.  The failure rate for the Choline tracer can be as much as 50%.  The first batch prepared for me was rejected as unsatisfactory and others members of this forum have experienced the same situation.

Edited by member 22 Dec 2017 at 16:49  | Reason: Not specified

Barry
User
Posted 07 Mar 2018 at 08:49

Hello, and may I say a very belated thank you , to all who replied.

I lost my dad on Jan 26th  this year (2018). 91.5 years old (Who said old age would get him before PCa would?)

On my own State of affairs, PSA up 0.5 now reading 8.6.  I've had a Bone Scan this January, which show - Clear, apart from an old break in the ribs, which I can't remember having and it has never showed up in the previous Bone scans I've had.

Also had a CT scan which, I'm told shows no sign of cancer spread. Only a few non related 'age' ailments. So they say that there is no reason for my PSA to be rising.

Scans to be re-done if there is a significant rise.

Really worried that I am heading the same way as my dad. I know that there is only so much that the doctors can do and that we don't live forever, but he (dad) went down ( being abled bodied , look after himself etc.) in less than a year to being totally helpless.

I dont want to wait around until my PSA rises to such a level that the urologist passes me on to the oncologist.

Is there anything I should be asking urology to do? At the moment I'm on Bicalutimide and zolodex injection. I see my Specialist nurse today.

Thanks ,

Rick

 

User
Posted 07 Mar 2018 at 17:52

Transport, this is not a surgical case surely? You must see an oncologist to get a balanced view. There could be quite a choice of curative treatments available (including abiraterone, as I mentioned before, and clinical trials) to give you every chance of following your dad's example in longevity. BTW, I think 91.5 is a fantastic age to reach what ever gets you in the end. You should have good genes. Give them every chance!

AC

User
Posted 08 Mar 2018 at 06:34

Thank you AC, The worry I have about the other treatments is that, dad was put on Enzalutimide, and it had little effect. His PSA kept rising and after four months he was taken off it.

I did however go to see my Specialist nurse, yesterday, and she suggested a PET scan. This however needs the OK from my consultant  and I should have an answer by this Friday. (fingers crossed)

 
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