ARV-110 trial participation update- 4 weeks so far

[HopingForTheBest1]

When I started the ARV-110 trial 4 weeks ago, my previously rising PSA was at 4.3. It is now 5.8, which is disappointing to say the least. I have been told that I should not focus on my PSA levels, and the scans scheduled to occur in another 4 weeks (CT and bone) will give a fuller picture as to where things stand. Easier said than done.

I have asked for the scans to be moved up 2 weeks, but have not yet heard back. I expect the trial protocol would not allow this. And the only option right now is to wait and see what the scans show. So be it.

Meanwhile, this is making me very nervous and anxious. I want to move on to the next treatment option as soon as possible, whatever that may be, should it be found that this drug is determined not to be effective for me.

[lewicki]

When I was on the ESK981 trial I was told that my PSA would go up at first then it would come down. Went to747. stopped the trial and went on chemo. Then to University of Heidelberg for LU-177 and AC-225. Was refused LU-177 here because I still have a prostate. Yep. PSA now >.01.

[HopingForTheBest1 in reply to lewicki]

Which chemo did you have, and did you have any before? Was it the chemo and/or the PSMA therapy that brought down your PSA? How long did it take?

[lewicki in reply to HopingForTheBest1]

PSA went from 747 to 550 when I stopped ESK981. I then had toe chemos PSA went to 265 then I went to Germany. Went four times from June 2019 to last one in July 2020.

[HopingForTheBest1 in reply to lewicki]

Must have been hard to travel overseas during COVID?

[lewicki in reply to HopingForTheBest1]

Yes it was. I wanted to go in January 2020 but Germany was closed. They then allowed those to come for medical reasons and was to be tested within 24 hours before flight which was another issue.. Letters from German doctors and went in July for my last and final treatment. Airplane going was packed but return was maybe 30 percent occupied. Then Germany closed it again. I was lucky.

[Hidden in reply to lewicki]

I thought you were refused a PSMA scan here at Michigan medicine because you still had your prostate gland, not LU-177 treatment. Which is it?

[lewicki in reply to Hidden]

I was refused the PSMA scan because I have a Prostate gland. I wanted the scan so I could send to the University of Heidelberg as they would let me come if I tested poorly for the treatment. I convinced them to allow me to come as I told them if I test poorly I would just get back on a plane and go home. No problem. According to Dr. Haberkorn head of the radiation department he said " I tested very high and we will melt your cancer like butter in the hot sun" PSA >0.1 for eight months. U of M would not do the trial even if there was an opening because I still have a gland. No test no LU-177. I had both LU-177 and AC-225 at the U of H.

[Cosmo3 in reply to lewicki]

What determines wether you are a good candidate for this type of Chemo treatment? What do they look for in the PSMA test? And did you fail with other frontline drug treatments? Thanks.

[HopingForTheBest1 in reply to lewicki]

So glad to hear about your success with LU177 & AC225 combo therapy in Germany. Tagawa at Weill Cornell will be starting the first trial in the US using this combo. I am on the list.

[Ramp7 in reply to HopingForTheBest1]

I been reading about your journey. My PSA rising after Lupron and Zytiga failing, 18 months. Switched to Dexamethosone, PSA still rising. Nov. 29, 2021 I meet at Smilow Yale New Haven. They are talking about ARV-101 trial. I haven't seen anyone with a long term positive response.

[lewicki in reply to Ramp7]

I am not to familiar with the trial. If it is in stage three and is working then?The AC-225 ABD LU-177 is what I did in Germany.

[Ramp7 in reply to lewicki]

I agree, if I can find a trial in the North East that would be perfect. I'm not up to date on vaccines so travel would be problematic.

[lewicki in reply to Ramp7]

I recall that their is a trial starting up for LU-177 and AC-225 someplace in the US . If I find it I will forward.

[Tall_Allen]

What is your bone alkaline phosphatase?

[HopingForTheBest1 in reply to Tall_Allen]

36

[Tall_Allen in reply to HopingForTheBest1]

So that's in normal range. PSA can be elevated when cancer cells are dying. You have to wait for the scan.

[Pleroma in reply to HopingForTheBest1]

I am following close behind you in terms of diagnosis and treatments, so watch your posts with interest.

Have you considered BAT as an option yet?

[HopingForTheBest1 in reply to Pleroma]

I haven't. I might pursue a BiTe trial next. I was looking at a trial at Columbia using REGN5678 + immunotherapy drug Cemiplimab. Remains to be seen what my plan B will be. Also, I have not had any chemo treatments as of yet.

[lewicki in reply to Tall_Allen]

Do not know what it was, At that time I was not aware of the terminology.

[lewicki]

Hello,How did the trial work? Still on it?

Thanks

[Sandi5050 in reply to lewicki]

Ac225+ lu177 cocktail therapy didnt work for me up to 3 cycle.

[lewicki in reply to Sandi5050]

Where are you doing this?Are you doing any more? I did four times.

[Sandi5050 in reply to lewicki]

Jena university hospital, Germany. I had Lu177 therapy for 4 times during 2.5 years from Zaalandes University hospital then got resistance.

[lewicki in reply to Sandi5050]

Did you have AC-225 also?If not why did you not get it?

Thanks

[lewicki in reply to lewicki]

Sorry , just re-read your comment. I see you did AC-225 also. What do the doctors there tell you?