Phase 1 trial participation Nurix NX-... - Advanced Prostate...

Advanced Prostate Cancer

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Phase 1 trial participation Nurix NX-1607

konichiwa12 profile image
29 Replies

I have not been on any treatment since I stopped Docetaxel chemo last year except Prostap injections every 12 weeks. My PSA went up from ~9 to 20 from May to September. I have just been invited to take part in a phase 1a safety and tolerability study of NX-1607. It aims to inhibit CBL-B (Casitas B-lineage lymphoma proto-oncogene) which is a gene responsible for proteins important in the regulation of the immune system. Inhibiting CBL-B is expected to increase immune cell response helping it fight cancer. Is anyone aware of this trial and have any idea of side effect likelihood been identified? Does anyone know of any successful trials so far?

Merry Christmas All,

Richard

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konichiwa12
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29 Replies
Tall_Allen profile image
Tall_Allen

I know nothing about it. Can you get 177LuPSMA in Japan? If you are considering it, you may also want to get an FDG PET scan first.

konichiwa12 profile image
konichiwa12 in reply toTall_Allen

I’m not in Japan, I just worked there a lot. I’m in Newcastle England. I have been advised to try any clinical trials before having 2nd stage Cabazitaxel chemo.

Tall_Allen profile image
Tall_Allen in reply tokonichiwa12

Can you go to India for 177LuPSMA treatment?

konichiwa12 profile image
konichiwa12 in reply toTall_Allen

I can get that here. It costs around £40,000 but my Onco reckons it’s not effective on low burden PCa which I’m considered to have. Confusing!

Tall_Allen profile image
Tall_Allen in reply tokonichiwa12

£40,000!! It may be a LOT less expensive to get it in India. I agree that you may not require as many infusions because of your low burden. In fact, too many infusions may be increasingly toxic.

This pilot study found that " All 10 patients showed altered PSA kinetics postponed androgen deprivation therapy, and maintained good quality of life. Half of the patients showed a PSA response of more than 50%. One patient had a complete response on PSMA-PET imaging until EOS and two others had only minimal residual disease."

aacrjournals.org/clincancer...

And this pilot study found that earlier use when patients had lower volume metastases had a good response and did not cause undo harm:

ncbi.nlm.nih.gov/pmc/articl...

Maybe email those links to your Onco and discuss.

I get antsy over immunotherapy trials because of the long history of failure of such trials for PCa. Maybe some of the BiTE or CAR-T trials will be different.

jackwfrench profile image
jackwfrench in reply toTall_Allen

Can you help me understand - does a “low volume” patient with a PSA of 9,20 indicate just more spreading without significant sized tumors?

Tall_Allen profile image
Tall_Allen in reply tojackwfrench

Low volume refers to the number of metastases detected.

konichiwa12 profile image
konichiwa12 in reply toTall_Allen

They appear to be trials for hormone sensitive pc but I have castrate resistant pc?

Tall_Allen profile image
Tall_Allen in reply tokonichiwa12

His argument was that your cancer is too low volume, not that you are castration-resistant.

witantric profile image
witantric in reply toTall_Allen

It India it is around 5-6k.

Maxone73 profile image
Maxone73

you can have Lu 177 in Italy as well (Actinium in Austria), to confirm that you are eligible they would first require your docs (ok if they are in English) then a visit (costs about 40 euros) then they can say yes or no.

cro.sanita.fvg.it

I found the info for a brother in Slovenia as it’s close to the border, but there are other hospitals in northern Italy that can do that.

konichiwa12 profile image
konichiwa12 in reply toMaxone73

Thanks for the info but my Onco is adamant that Lutitium 177 is not worth doing for me yet. He specifically gave me an example of another patient who had it but it didn't work due to low burden. 🤷‍♂️

Maxone73 profile image
Maxone73 in reply tokonichiwa12

As long as it expresses PSA it can work, but I am not an onco.

Maxone73 profile image
Maxone73 in reply tokonichiwa12

Ok, Arx517? I forgot what’s available in the UK At the moment

Mrtroxely profile image
Mrtroxely in reply tokonichiwa12

If your going through the NHS.And you have oncologist.

You get chemo, radio, hormone injections, and can get the enza/applu tamides tablets.....

If there were proper tests.....

Pmsa, gene tests then your doc would have more info.

Your doc has no clue if imuno, litium, bat or other treatments would work unless they tested to see if they would work.

Your PSA is going up and hes got you willing to be a lab rat before trying treatments that can work well, if they work for your type of cancer?

Mines the same.

If it's not on the nice list, then is sounds like they actively discourage any of them.

Example.

Could get gene tested

Could get pmsa scan and get good picture.

Could try Lutium, it can work wonders for small percentage of PCA.

Or

Test some NX stuff on a trial, hopefully you might not get the placebos......

konichiwa12 profile image
konichiwa12 in reply toMrtroxely

I've had the foundation liquid biopsy test twice and the results were negative both times. They believe there is not sufficient circulation dead tumor cells to show up.

MateoBeach profile image
MateoBeach in reply tokonichiwa12

Consider the possibility that your Onco may be wrong about that. Lu17 may work even better in earlier low-volume disease and especially if lymph node only. Better to consult with a doctor who works with it all the time. Such as Ishita Sen in Dehli, or Nat Lenzo in Australia (GenesisCare AU). I had Lu177-J591 from Dr. Lenzo 18 months ago (particularly good for low-volume residual disease after SBRT). It cost about $11,000 US for the two dose treatment total. PSA went down 90% initially then gradually became undetectable.

konichiwa12 profile image
konichiwa12 in reply toMateoBeach

It's not in one lymph node only. It's in RH iliac, sacrum, 4th lumbar verterbrae and several other places....

MateoBeach profile image
MateoBeach in reply tokonichiwa12

Unfortunate. So SBRT would not be beneficial except for managing painful sites. Lu177-PSMA could be a good choice especially if no non-concordant sites on FDG PET. But I would look into Ra223 (Xofigo) especially with Provenge. The trial may be a wild card but may exclude getting better established treatments.

konichiwa12 profile image
konichiwa12 in reply toMateoBeach

I had 5 fractions of SBRT on the rh iliac met around 2 years ago which was about 6cm diameter. It’s back there now anyway……

Ian99 profile image
Ian99 in reply toMateoBeach

Hi Paul, if I may ask.. did you include J591 to mitigate SEs on salivary glands? And did it work?

MateoBeach profile image
MateoBeach in reply toIan99

J591 has little to no salivary side effects. I had none. But the reason I chose it over Pluvicto was better efficacy in eliminating residual prostate cancer. Yes at nearly two years it has worked very well. PSA undetectable

konichiwa12 profile image
konichiwa12

I've had 3 PSMA screens before. I have had Abiraterone until it stopped working. The only established treatment left is the Cabazitaxel. As the burden is low he feels it is an opportunity to participate in any trial. Lu177 is an option but it's not a NICE standard. I had private health care until I took early retirement in January so would have got it here for free! It's confusing to me as I thought the PSA was the main biomarker but the trials professor at the Freeman in Newcastle said "for example, the lymph node met has increased from 12mm to 15mm which is not dramatic". I will start this trial after a Carribean cruise end of January. The trial is a dose escalation trial so I'm pretty sure placebos aren't involved?

Benkaymel profile image
Benkaymel in reply tokonichiwa12

There are some parallels between yours and my PCa stories except I'm high burden mCRPC. I'm in the middle of 10 cycles of docetaxel and as you say, the only remaining treatment on offer by the NHS after that is Cabazitaxel. However, it's not the only established treatment available - just the only one the NHS offer. I will be looking seriously at Pluvicto but as you point out, it's very expensive. Like you, I lost my private health insurance when I retired last year. I had genetic testing when first diagnosed which didn't show any mutations but things may have changed so I'm considering getting a liquid biopsy done but again, I'm told the NHS won't fund that so I'll have to self-pay. It may indicate a specific treatment such as Parp inhibitors or immunotherapy could be effective. Failing all that, I'll be looking for a suitable clinical trial.

konichiwa12 profile image
konichiwa12 in reply toBenkaymel

I had my first liquid biopsy done privately but the second one was on the NHS recently.

Benkaymel profile image
Benkaymel in reply tokonichiwa12

You're the second person to say the NHS funded their liquid biopsy. I'll have to press my onco about that.

daleboy3 profile image
daleboy3

Can I suggest you also try taking a natural remedy to boost your immune system as Chemo drains your bodies ability to fight Cancer, Buy “Black Fermented Garlic” in Capsules they are 12 times stronger than normal garlic & can fight & can prevent 14 types of Cancer on their own, do some research using google

j-o-h-n profile image
j-o-h-n in reply todaleboy3

Followed by lots of breath mints..........

Merry Christmas.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/24/2023 4:39 PM EST

konichiwa12 profile image
konichiwa12

I haven't had chemo for over 15 months? I don't even qualify for a Covid booster for soe strange reason despite not having one since december 2021?

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