Info on Actium 225

[Islandboy2021]

Any guy out there have any experience with Actium 225.

Thanks

[GP24]

Actinium 225 destroys the salivary glands causing dry mouth - a really bad side effect. It is very effective against the tumor. Why do you ask, are you offered to join a clinical trial with Ac225?

[Islandboy2021 in reply to GP24]

I am running out of options for treatments. Looking at possible trials that might be available. I think Ac225 might be a good option if I can get into a trial. Currently on chemo and it’s failing again and Lu177 isn’t available for me here unless I pay for it.

[GP24 in reply to Islandboy2021]

Maybe you can convince the nuclear physician to start with a reduced dose/activity of Ac225.

[Islandboy2021 in reply to GP24]

What ever happened to ODM208. Did this drug ever get approved.

[GP24 in reply to Islandboy2021]

The ODM 208 (Cypides) trial is closed to accrual and now the included patients are observed to determine the results of the treatment.

clinicaltrials.gov/study/NC...

evidence.nejm.org/doi/abs/1...

[spencoid2 in reply to Islandboy2021]

I am in a similar position so am very interested in what you find. Have you explored other possible treatments other than nuclear? Do you have any mutations that might suggest that another treatment might be worth trying? I have one but no one seems to suggest anything worth trying. I guess I need to start looking again for clinical trials. I liked the idea of Actinium but the possibility of permanent xerostomia (sp) was scary.

[GP24]

Maybe you can get into this trial: classic.clinicaltrials.gov/... It is supposed to start at some locations in Canada.

[Islandboy2021 in reply to GP24]

Thanks for sending this through. I have been reading the Exclusion Criteria it mentions prior systemic anticancer therapy including Chemotherapy within 4 weeks would exclude you. Could I assume if I was to stop chemotherapy for 5-6 weeks before then I would be eligible. All this is a bit confusing for me and others. It would be nice to have an oncologist that would be willing to research these things and have new ideas and options. The only treatments available to me are chemotherapy until it fails then pain meds until I die. That is all they have to offer me at this time. Its a bit disappointing to be honest.

[GP24 in reply to Islandboy2021]

The therapy in this trial shall be an alternative to chemo. If you stop the chemo four weeks before being included it should be ok. They do not want to include patients who get chemo while getting the new drug.

The contacts for the trial are listed on the link I provided. I would get in contact with bccancer.bc.ca/ and see if they already started recruiting or will put you on the waiting list.

[leebeth]

My husband went to Turkey for it January 2023. He had no side effects, no dry mouth, but his cancer was too advanced and he passed in March. He had hoped to go for another treatment but his tumor burden was overwhelming.

[cancervictim in reply to leebeth]

I’m sorry to read this. How would you rate your turkey experience?

[leebeth in reply to cancervictim]

10 out of 10. It’s a John Hopkins affiliated facility. No HIPAA though! They told us about all the famous people that had been there. Haha. Just the porter was so talkative but it was surprising

[GeorgeGlass in reply to leebeth]

Why does hipaa matter?

[leebeth in reply to GeorgeGlass]

We didn’t care! It was just so funny, the contrast. Here in the US they are careful not to say your last name in the waiting room. At Anadolu, they took my husband’s complete history right in the waiting room, just inches away from everyone else. Then as they wheeled him around the facility, they told us every famous person who had been there for Lutetium or Pluvicto: sports figures, actors, etc. Coming from the US, where our oncologist who is a personal friend won’t say hi to his wife for us because she would realize we are patients, the contrast was stark and somewhat amusing. I already forgot all the names so it totally didn’t matter!

[GeorgeGlass in reply to leebeth]

That’s good that your experience was ok. I think hipaa often causes inefficiencies that lead to poor treatment. Laws can sometimes get in the way of efficiency. I wish the treatment resulted in a better outcome for you. Did you guys try lu-177 pluvicto?

[leebeth in reply to GeorgeGlass]

Agreed that HIPAA sensitivities go way too far; that was my whole point.

He had 4 Pluvicto which physically made him feel GREAT but the scans told a different story, so they sent us for Actinium instead.

His final Pluvicto, he was so sick in the preceding days. Fevers, vomiting, weakness. Within two hours of Pluvicto, he felt so much better.

I wonder if eventually dosing or interval will be able to be tweaked. He needed a treatment every 4 weeks, we thought. But obviously the studies were not done that way.

[GeorgeGlass in reply to leebeth]

Good observations. Thanks for sharing. Is sad to hear how bad your husband felt 😞

[cancervictim in reply to leebeth]

Funny, you'd think the very wealthy would go to Germany, not Turkey. I understand the cost is much lower in Turkey. Is that true? Were the facilities top notch?

[leebeth in reply to cancervictim]

I did not compare, because Turkey was more readily available and as Mayo told him, “his runway was short.”

Anadolu in Turkey was very top notch. It is affiliated with Johns Hopkins.

[Maxone73]

does it have to be in Canada?

[cancervictim in reply to Maxone73]

I don’t think it’s impossible for Canadians to participate in American trials. Maybe Seattle trials are an option

[FRTHBST]

I received one dose of Actinium and then 2 of LU-177. I had bone mets and mets scattered from shoulders to legs. PSA had risen to 280 from 70 within one month(failed immunotherapy). A month after combination therapy of Orgovyx and Actinium, PSA dropped to 7. Actinium was given first because it can be more effective on bone mets. Had some dry mouth that resolved after a few weeks. Was treated at a clinic in Austria, great doctor, lots of experience with theranostics, professor at the university, etc. Only side effect other than dry mouth was fatigue, but was fatigued before treatment, so hard to tell. Was expensive, about $20,000 per dose. Mobilized friends and family to make it happen.

[cancervictim in reply to FRTHBST]

Thanks for sharing. One injection of Lu is 25k in Canada so the $20k not so out is line. Amazing results!