One last push ..please...help for my Dad. NHS treatments no longer viable - Pca stage 4.

[kikinini]

Guys...do not know how to connect this post to my previous ones..sorry. I'm also all over the place, forgive my ramblings! I have finally gotten hold of Dad's records. Nothing more NHS can do, so am looking at Turkey for Lu 177. I know this is an option, but want to literally exhaust anything in the UK. Meeting with Oncologist in 2 days.

In the meantime, I have pleaded with his Onco team to please guide me as to any clinical trials available in the UK. Have contacted Royal Marsden for trials. Have registered with all relevant trial platforms. Have also emailed Dr De Bono at the Marsden.

Additionally, I have found the following, looking through all his records, regarding Germline genetic testing of R444.2 panel. it reads..

" BRCA1 or BRCA 2 not indicated. No further testing is planned. If this patient could be eligible for the extended prostate cancer panel R430, referral to Clinical Genetics for further assessment may be appropriate". Further tests were never carried out.

For the record, I can correctly give his treatment history. Is there ANYTHING, treatment-wise/combination etc I should be asking for?

Mar 2022 - ADT

July 2022 - PSA 1000

July 2022 - ADT switched to Prostap.

Aug 2022 - Spinal cord compression - Radiotherapy to T5 and T12, T4-T6 and T11-L1

Aug 2022 - Docetaxel chemotherapy

Sept 2022 - Docetaxel associated toxicity. ITU admission respiratory type 1 failure, pneumonitis. PSA 35

Dec 2022 - Radiotherapy pelvis.

Mar 2023 - Enteritis.

May 2023 - Radiotherapy shoulders and rib.

Sept 2023 - Jan 2024 - Enzalutamide.

Sept 2023 - Radiotherapy C7-T4, T7-T9.

Jan 2024 - PSA 200

Jan 2024 - Cabazitaxel (1st cycle )50% dose reduction)

Feb 2024 - PSA 370 - Cabazitaxel (2nd cycle)

March 2024 - PSA 669

April - Carboplatin at 75% Cycle PSA 1500

April 2024 - Carboplatin Cycle 2 PSA 1300

May 2024 - PSA 1800 - Carboplatin and all chemo stopped.

May/June 2024 - Spinal cord compression. Admitted into A&E.

July 2024 - No more treatments available.

As usual, I remain forever grateful for any input. Genuinely, this forum has been a Godsend for me.

[God_Loves_Me]

do you have access to AMG 509 or ARX 517 clinical trials?

[kikinini in reply to God_Loves_Me]

Thanks for that. Checked and checked again - seems to only be available in the US, not in UK.

Trials look quite promising as well

Thanks though🙏

[God_Loves_Me in reply to kikinini]

Any Trials on ADC in uk ?

[NickJoy in reply to kikinini]

Would it be worth asking the European hospitals running the AMG 509 trial if he could join?

[lcfcpolo]

I completely emphasis with where you are at. Your amazing for supporting your Dad.

Do ask his Oncologist to refer your Dad for the clinical genetics referral. We have seen in here people have brilliant responses when they have mshi genes etc. This would then require keytruda or a similar immunotherapy. If they won't, ask if you can do a private referral and do a blood test at least with a private tester. You can do a saliva test at a company called 'check4cancer' or 'Randox health '. I googled these, there are others, no idea if they are any good. Probably best to ring them.

Can your Dad be put back on Enzalutamide? He responded for a number of months, the chemotherapy may have re-sentivised him to it.

Outside of Turkey, India, Dr. Sen has posted in here before. J591 treatment in Perth, Australia, maybe a option as well.

Good luck.

[kikinini in reply to lcfcpolo]

Done just that lcfcpolo! Appreciate your efforts just to give me some names of companies. Tomorrow I will be calling the companies as you suggest. I have requested this further testinG from his Oncologist. 🙏🙏

[Tall_Allen]

Why do you think Pluvicto would be beneficial? Has he had a PSMA PET/CT?

I think we talked about Xofigo combinations - is that available in the UK?

[kikinini in reply to Tall_Allen]

Thanks Tall_Allen,

Yes, he has. He did it in 2022 and he was found to be PSMA avid. He had it again, last week, yet to see results (appt with Onco on Wed).

As far as Xofigo, I have requested many times, but they say not suitable with such a high PSA.

[Tall_Allen in reply to kikinini]

There are no PSA restrictions, I am aware of - no visceral metastases and some pain are required.

[Lemonpower in reply to kikinini]

My dad is in Uk was supposed to start xofigo, but broke his leg, was bedbound, lost weight, now his health is poor and his PSA is 630 on july 3rd, and they have stopped mentioning Xofigo. I wandered if it was to do with is PSA or just fact he'd lost weight due to broken leg.

[Rogersw]

Hi Kikinni I can’t help much I’m afraid but I just wanted to say I am in exactly the same position and to quote my consultant I have months rather than years. I have more or less accepted the situation as I am now 77 and was diagnosed 11 years ago. Good luck with yoursearch

Roger

[kikinini in reply to Rogersw]

What a fight you've had. I wish you ongoing strength and peace Rogersw. All the very best🙏

[Maxone73 in reply to Rogersw]

Roger, read my reply to kikinini, there are some interesting trials in the UK, some companies have also an extended access policy in case you could not access the trials

[Maxone73]

OVM-200 trial could be an option since you are in the uk

also ODM-208 and CB307

[kikinini in reply to Maxone73]

Thanks so much Maxone73🙏

I have literally sent an urgent email to Dad's Onco with further info on the trials you have mentioned, will keep you up to speed after Wednesday.

Thanks so very much.

Omer

[Maxone73 in reply to kikinini]

ah add onct-534, very promising and in the UK as well!

actually De Bono should be the lead investigator for that...

[SC19 in reply to kikinini]

My dad is on the ODM-208 trial at The Christie in Manchester - the care seems to be a lot more thorough than standard NHS treatment.

[Lavender22]

My husband had some success with Abiraterone. I don’t see it on you list of treatments. Is this available?

[Nous]

really sorry re what's happening with your Dad kikinini ... two websites you might checkout ... leal.health ... and ... envita.com ... best wishes ... Nous 😀

[Maxone73]

for clinical trials, I have joined a free (for patients) service called MassiveBio. They use some AI to match patients and therapies.

[FrostGyre]

Your dad needs to eat just meat (first choice, beef), eggs, and animal fat.

Drink nothing but water.

He needs to get his cholesterol levels up.

No carbs: no fruit, no vegetables, no grains. And no more barbaric treatments.