Advice needed please.: Hi guys, Looking... - Advanced Prostate...

Advanced Prostate Cancer

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Advice needed please.

taylor123 profile image
12 Replies

Hi guys,

Looking for some advice and experiences that may help.

 My Father was diagnosed with prostate cancer in march 2014 with a PSA of 433.

First round of ADT got his PSA down to 0.23.

 He has since done three rounds of intermittent hormone therapy since, and he is currently on Zytiga and Firmagon after Casodex previously failed last year.

 However for the first time his PSA has gone up whilst on Zytiga. From 20 to 32.

 A CT Scan today has revealed several mets on the spine, ribs and manubrium which are described as mild endplate depressions but with no significant vertebral collapse.

We are scheduled to see Dr Nick Plowman on Harley Street (He was strongly recommended by Dr Khoo at the Royal Marsden) 

My Father has never had radiation, chemo, xandti, enzalutamide, denosumab etc.

What other treatments are viable at this stage?

 We are looking to do a PMSA scan with a view to Lutetium 177 as well.



Has anybody used radiation for several bone mets?



Has anybody had any experience with Chemo or BAT resensitising Zytiga ?



Any other advise would be greatly received.


My Father has no pain also.



Huge thank you to anybody who replies. :)

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taylor123
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12 Replies
tango65 profile image
tango65

They could try to change prednisone to dexamethasone and/or add indomethacin and see if zytiga keeps working. With bone metastases and a PSA of 32 they could do a liquid biopsy and study the genome of the circulating tumor cells (CTC) and/ or free cell DNA, to see if the cancer has mutations which could be treated with specific drugs.

There are clinical trials in the USA which could re-sensitize the cancer to zytiga or enzalutamide using niclosamide:

clinicaltrials.gov/ct2/resu...

It could be convenient to get a Ga 68 PSMA PET/CT and if the cancer express PSMA to consider Lu 177 PSMA treatment or Ac 225 PSMA treatment if there is diffuse bone marrow infiltration by the cancer.

Lu 177 PSMA and/or chemo could resensitize the cancer to zytiga or enzalutamide.

taylor123 profile image
taylor123 in reply totango65

My Father has switched to dexamethasone immediately after the PSA risen whilst on Zytiga / Prednisone.

I believe I read that Niclosamide failed in that study? Unless that was another drug they tried.

tango65 profile image
tango65 in reply totaylor123

The clinical trials use a special form of Niclosamide (PDMX1001/niclosamide) which is absorved by the gut and can reach anti tumor concentrations in blood.

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

ascopubs.org/doi/abs/10.120...

health.ucdavis.edu/synthesi...

2dee profile image
2dee

Have you had any Genetic Counseling to confirm whether it would be useful to do Genetic Testing looking for certain mutant genes? Would require ancestral blood line cancer. If you have such genes then some different therapy is available to most.

2Dee

taylor123 profile image
taylor123 in reply to2dee

Hi there, thanks for the reply.

It's something we are trying to find more about in the UK.

If you have any specific links etc that would be great.

GreenStreet profile image
GreenStreet

I think Lu 177 might now be available in a clinic in Windsor

larry_dammit profile image
larry_dammit

You didn’t say how old you father was, I was 66 when diagnosed, went through 6 rounds of taxotere chemo, with casadexe and lupron, been on Xtandi since then with lupron and Xgeva shots monthly. 35 months and counting. 🙏🙏🙏

taylor123 profile image
taylor123 in reply tolarry_dammit

Sorry, My Dad is 79 in September. Still works every day and has no pain.

larry_dammit profile image
larry_dammit

Thank you. My dad has cancer as well. No real pain he is 87 so they just put him on the pills waiting 😡😢😢

Patrick-Turner profile image
Patrick-Turner

Hi Taylor123,

See my other recent post about getting Lu177.

I'm 72, had Gleason 9, inoperable at 62, Psa low for large amount of Pca. I had ADT, then Casodex and Zytiga added, did not work for long, then 5 x Docetaxel, Psa just went up, so 4 x Lu177 shots got Psa from 25 before to 1.6 about 1 month later, maybe its still going down, but no more bone pains, scans show bones healing, so not bad so far, from Lu177 treatments in Sydney.

Using beam radiation hardly worked for me initially at 9 years ago and may have damaged cartilage in hips, so I have a bad hip now and may need a new joint of an arthroscopy to clear out damaged tissue to reduce pain. Docs said they'll do one or other, and maybe I can cycle again. I have cycled 140,000km since 2006 - its very good for a man but I live in Canberra with the best cycling amenities in maybe the world.

Patrick Turner.

j-o-h-n profile image
j-o-h-n



 <==== NEW CHARACTER/fONT ???

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/17/2019 8:19 PM DST

Godblessus profile image
Godblessus

If you are in a position to pay for treatment, I just returned from Homburg Germany where I received PMSA lutetium/actinium therapy for metastatic Prostate cancer. It is not a cure but he has great success with remission, and is the new standard of care for ADT resistant prostate cancer in Germany. Dr Ezziddin is one of the pioneers, and one of the two to use tandem therapy that I know of, the clinic is excellent, the staff competent. The mostly speak English.

Here is a video of dr Ezziddin:

youtu.be/LrDtPz0G_ZI

Conceptualization

youtu.be/GRRmX5eTa8s

If you are interested please contact Mrs Sutter at the university and you may tell her Steve from Texas referred you :

Kerstin.Sutter@uks.eu

Mrs. Kerstin Sutter

Universitätsklinikum des Saarlandes

Klinik für Nuklearmedizin

Case Management

Koordinatorin der Tumortherapien

Gebäude 50

66421 Homburg, Deutschland

+49 6841 1624594

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