Tall_Allen4 years ago

Dexamethasone inhibits progression for a while.

Hidden in reply to Tall_Allen4 years ago

Isn't this the same statement for all current PCa treatments?

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Tall_Allen in reply to Hidden4 years ago

You mean that the all only work for a limited time? Yes, that's so.

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Hidden in reply to Tall_Allen4 years ago

Yes, and the length of time or as you say: "inhibits progression for a while" is specific to each person's biology. Currently, PCa treatments are blanket coverage, just take solace of how many lab animals were tortured for our well being...

Merry Christmas from the human race...

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Hidden4 years ago

I don't know how it works in the UK, but in the US, Apalutamide is approved for non-metastatic castrate resistant PCa. It sounds to me like you are castrate resistant since your PSA is still rising on primary ADT. But again, I don't know the system over there.

tango654 years ago

Niclosamide, an old drug, could change the androgen receptor and casodex could work again. There are clinical trials with niclosamide and the new anti androgens but it seems that niclosamide could also work for casodex.

ncbi.nlm.nih.gov/pubmed/285...

If it is approved in the UK you could discuss with your doctor the possibility of trying this drug. There are several papers published about niclosamide and prostate cancer. The dose they use in the new trials is 800 mg twice a day.

studypages.com/s/enzalutami...

Patrick-Turner4 years ago

Hi Marlin,

I was diagnosed 2009 Gleason 9, 9 positive biopsy samples, age 62. Have you had a PsMa Gallium68 PET / CT scan? Usually, this type of scan reveals mets well before any ordinary CT can. Then if mets are found, its a whole new ball game and I found out about all this when I had my first Ga68 scan in 2016, and that showed mets in 2 lymph nodes, and in 2017 many mets were big enough to show up in scans, including many in bones.

But the abiraterone ( Zytiga ) gave me only 8 months suppression and this year Psa got to 12, so I had 5 chemo shots over 15 weeks, then Psa was 45, with another Ga 68 scan showing more mets, so I had first Lu177 1 month after last chemo, and next is 4 Jan 2019. Psa has leveled at 25, but docs really cannot tell me status until I have yet another scan in weeks ahead.

Last week I cycled 364km in a 7 day period, so I am fairly fit + healthy at 71, apart from stage 4 Pca Pca that if not supressed / killed by Lu177 is likely to kill me in 2-3 years, with a dreadful end stage needing Fentanyl etc.

Lu177 gives mean life extension of 14 months. Cost here is about aud $39,000, and not covered by Medicare, so I am paying full cost, but unlike so many, I can afford it. Doc giving Lu177 has no idea how well Lu177 will work, and trend in Germany is that men turn up earlier to have rather than wait for miracles with chemo, and many men have high amount of tumour and their bones are badly weakened, so even if Lu177 reduces active amount of Pca in bones the lesions remain, so its important to get Lu177 early rather than late. Theoretically I should respond well because bone lesions are still small, not bursting through cartlidge or pressing against nerves etc.

But Pca is likely to take me out because I don't have other co-morbidities.

Maybe I live long enough for immune therapy to have become available therapy worth paying for.

Patrick Turner.

j-o-h-n in reply to Patrick-Turner4 years ago

And we hope so too.... Cause we need you here.... otherwise we will have to get another Patrick-Turner to replace you. It's gonna be hard to find one cause there ain't too many around with a dash in his name. Happy Christmas to you.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/24/2018 5:40 PM EST

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Patrick-Turner in reply to j-o-h-n4 years ago

Hi j-o-h-n,

Happy Christmas to everyone here.

I did not know I had a dash in my name, because I don't type one in.

But I have never felt a need to have a nickname, besides, I am 2 Irish to be Nick.

Now me mum was nearly completely Irish, which makes me tree kwarters Irish, but me dad was nearly completely English, and that makes me two terds English, and I do humbly 'ope the better fraction turns up 'ere to talk to ye all.

Try to get to New Year without alcohol poisoning or being murdered by a cousin.

And do try to not go insane,

But-love-all-those-you-need-to-love.

Patrick Turner.

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j-o-h-n in reply to Patrick-Turner4 years ago

Again a Merry and Jolly Christmas to you too. And you must know the difference between an Irish wedding and Irish wake............... one less drunk.... Take care!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/25/2018 1:39 AM EST

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duckman52 in reply to Patrick-Turner4 years ago

Mabey you should say fuck em.

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Break60 in reply to Patrick-Turner4 years ago

Have you taken xgeva for bone mets?

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Patrick-Turner in reply to Break604 years ago

Yes, I had 3 bi-monthly injections 1 late last year, 2 just before next one was due I had a sore bottom jawbone and dentist found a small hole in skin and was able to poke a probe through to what was a bare bone, so she agreed with me of my suspicion of beginning of lower jaw necrosis. An oral surgeon looked and after a CT scan agreed it was a small spot of dead bone, but not yet big enough to see any spot in CT scan or cause a big open hole in skin as I saw in pictures online where the condition when it gets worse. So I refused further Xgeva, and it had not slowed Pca progression in bones, and only 1 injection per 6 months is needed to give some limiting of lowering bone density, I had alread had a shot of zelodronic acid, Aclasta in 2012, and its effect lasts a long time, and the Xgeva on top plus ADT for 6 previous years made it very likely I'd get the side effect of jaw bone death, and scholarly articles online supported this idea.

Since I quit Xgeva, no more sore jaw, and problem seems to have gone away.

Patrick Turner.

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mcp19414 years ago

Check out what gregg57 said. Apalutamide (Erleada) would be standard of care for your condition in the US. NMCRPC