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.
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HopingForTheBest1
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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.
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.
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.
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.
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.
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.
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.
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.
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