Have you any better ideas?: I have... - Advanced Prostate...

Advanced Prostate Cancer

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Have you any better ideas?

Marlin25 profile image
14 Replies

I have posted before re my progression. 12 years down the line now .Original PSA37 Gl 8. Ext Beam Radiotherapy and ADT for 2 yrs. ADT on and off until 2 years ago. then PSA climbed continuously to 14. Bicalutamide added to Zoladex, PSA dropped to 7 for a few months then started rising again so Bicalutamide stopped, PSA continuing to rise. expecting to go on to Aberaterone but CT scan showed no identifiable metastasis so NICE rules in UK say no Aabiraterone or Enxalutamide allowed. it seems I have to get more ill before I can better treatment. My oncologist is putting me on Dexamethasone and continuing monitoring. what will Dexamethasone do for me, hence the original question. I have had a very good quality of life up to now , side effects of zoladex practically non existent now.


14 Replies
Tall_Allen profile image

Dexamethasone inhibits progression for a while.

in reply to Tall_Allen

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

Tall_Allen profile image
Tall_Allen in reply to

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

in reply to Tall_Allen

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...

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.

tango65 profile image

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.


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.


Patrick-Turner profile image

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 profile image
j-o-h-n in reply to Patrick-Turner

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

Patrick-Turner profile image
Patrick-Turner in reply to j-o-h-n

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,


Patrick Turner.

j-o-h-n profile image
j-o-h-n in reply to Patrick-Turner

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

duckman52 profile image
duckman52 in reply to Patrick-Turner

Mabey you should say fuck em.

Break60 profile image
Break60 in reply to Patrick-Turner

Have you taken xgeva for bone mets?

Patrick-Turner profile image
Patrick-Turner in reply to Break60

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.

mcp1941 profile image

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

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