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In fathers footsteps

User
Posted 16 December 2017 07:34:03(UTC)
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 16 December 2017 15:40:29(UTC)

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 December 2017 18:14:17(UTC)

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 December 2017 19:27:13(UTC)

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

AC

User
Posted 16 December 2017 19:51:39(UTC)
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 December 2017 17:27:51(UTC)

Transport of course!

AC

User
Posted 21 December 2017 20:59:36(UTC)

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.

Thanked 2 times
User
Posted 21 December 2017 22:31:41(UTC)

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 December 2017 03:14:11(UTC)

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.

Barry
Thanked 1 time
 
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