I might have a chance to get on a trial with VT-464...Zytiga is starting to lose it's effectiveness. Has anyone here had any experience with this drug?
VT-464: I might have a chance to get on... - Advanced Prostate...
VT-464
Written by
wrando
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15 Replies
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What kind of drug is it? What phase is the trial, & where is it being conducted? If it's not Phase I, have you read about the results of the earlier phase(s)? Do you have a 50% chance of getting VT-464, or a better percentage? Would you otherwise proceed to enzalutamide, or have you already had it?
Those are good questions to ask because I haven't met with the doctor in charge yet. I believe it's a phase 2 trial for people that have failed zytiga or xtandi or both.
It was a good idea to ask about it here, but it doesn't look like you're going to get your answer here. If you'd be going in a Phase 2, the only people with experience were the relatively few in the Phase 1. Phase 1 is to make sure it's safe enough to proceed to Phase 2, but there should be a little info about effectiveness.
If you have the nationally assigned number of the clinical trial, you can just put that number in your browser, click & read all about it. If not, search for VT-464 clinical trial. It's definitely good to learn whatever you can before you meet with the doc, & have a written list of questions when you do, including anything you like that I suggested.
Work on your list of questions in a document, so you can decide what order to put them in at the end, & move them around. Bring 2 printed copies. If you like, you can tell the doctor you brought a list of the questions you have & hand a copy over. You can take notes on your copy. You might want to ask if the doctor has any financial interest in the manufacturer or as a consultant, just to be sure the doctor isn't biased.
Best of luck on your meeting, & please let us know what you find out. You might well get some good advice here on whether it sounds like a good idea to do it.
Have you already had Xtandi? You should ask the doctor if being in this trial might make you ineligible for any treatment that is otherwise available to you.
Neal
I have not had xtandi yet. There are two trials that are a possibility. There's the VT-464 or a phase one with a combo of atezolizumab and Raduim 223...at Smillow Cancer Center in New Haven CT
Not approved yet...they are having some success, but the question is...is it better than Extandi after AA...that's not clear.
That would be great...just what's needed, but I haven't read anything about that benefit. I'll check it out.
I agree totally...I will probably die without having used chemo, and I do think they should be looking for a way to reverse the changes that render these second line ADTs ineffective.
My husband was on a VT-464 clinical trial this past spring/summer. He has had HD ketoconazole + prednisone, Provenge, Extandi before the VT-464. He has no bone mets and a PSA doubling time of ~2 months before the VT-464. VT-464 turned out to be too strong for him, cutting the dose still gave him side effects (some the doctors had never heard of before), that forced him off the trial after only a few months. We were warned before going on the trial that there was a possibility of a side effect ("chemo brain fog on steroids"), that would completely disappear upon discontinuation of the drug. Once on VT-464, I saw an intelligent, reserved man turn into a garrulous fool that wound up on his knees in the examining room before he finally realized that he had totally failed the neurological exam. Well, he got chemo brain fog on steroids and it hasn't completely disappeared, they told us that recovery took one to two months - after two months he'll be stuck at whatever level. He had to retire from his teaching job. The doctors told him to try Zytiga next. His PSA has been partially controlled by the Zytiga for the last four months, not dropping below what it was when he started it, but making 22% jumps up and down - which seems strange to me.
My advice from this experience is: Each man is different, so until you are in the trial, you won't know. If you are hit by side effects such as sparkling, swirling lights when you step outside in daylight or chemo brain fog, don't try to tough it out, let the doctor know immediately so something can be done. Someone close to you needs to keep a daily log of your behavior for signs of chemo brain fog, - because you won't notice it happening and you won't believe it is happening. The longer you delay in hopes of a cure, the less there will be of the old you afterwards.
Naturally, we all hope to avoid the placebo arm of a trial (and avoid trials with placebo arms), but being a "lab rat" is stepping into the unknown or unproven. You have to have hope and trust that the doctor wants you to benefit from the trial.
Good luck with your decision.
in reply to GAdrummer
Re: "We were warned before going on the trial that there was a possibility of a side effect ("chemo brain fog on steroids"), that would completely disappear upon discontinuation of the drug. Once on VT-464, I saw an intelligent, reserved man turn into a garrulous fool that wound up on his knees in the examining room before he finally realized that he had totally failed the neurological exam. Well, he got chemo brain fog on steroids and it hasn't completely disappeared, they told us that recovery took one to two months"
Unless this drug is vastly different from the other chemo drugs used in MANY studies of chemo brain, you're being fed the usual line of BS associate with the VAST majority of drug studies. In short, thousands if not millions of peer-reviewed studies clearly show that drug manufacturers and the doctors performing the research dramatically misrepresent and/or outright lie about side effects. One megastudy rated that BS factor at 80 percent. The doctors want the research money to keep flowing, and the mfrs (any interpretation is valid) want to sell product.
Most chemo brain RCTs show that not only do well over half of chemo pts acquire a long list of test-measurable, MRI-evident, self-evident, serious, mental/cognitive disabilities beginning very early in their chemo course, but a very large and partially identifiable minority keep getting worse years after stopping chemo. Very few recover significantly, because those brain regions shown by MRI after the first injection do not recover and the damage often just keeps accruing both with more chemo and more time.
But don't mind me; I've just begun reading those RCTs and several books about chemo brain. I have lots more reading to do before choosing for myself soon whether to pursue chemo. It scares me much more than my 4 unrelated cancers do, and its calendar benefits can be mighty short-lived. I should be spending this time reading about it, but typing about it also contributes to my decision.
At least Alzheimer's victims ultimately don't recognize their disability; your "garrulous fool" fully understands that his mind is gone and is terrified and mortified about it.
in reply to
Re: "Most chemo brain RCTs show that not only do well over half of chemo pts acquire a long list of test-measurable, MRI-evident, self-evident, serious, mental/cognitive disabilities beginning very early in their chemo course, but a very large and partially identifiable minority keep getting worse years after stopping chemo."
My oncologists and my MD niece flatly deny the above statement, placing the incidence at more like 3 or 4% vs the studies' 35 to 90%. Most peer-reviewed study figures I can find run well over 50%. That discrepancy is too big to ignore. My niece got her MD >5 years ago, most of my doctors got theirs earlier, and these studies (and books by oncology professionals on chemo brain) are very recent. I haven't had time to dig into the studies deeply enough yet to determine who's right (patients shouldn't HAVE to do that!), but damned if I'm going to take a step that big, that risky, and that short on payoff without doing my own homework first. Base on even my best oncologists' performances, I just don't trust providers that much with decisions this important. The vast majority of them just can't get maximum longevity out of their minds, to the extent it clouds their medical judgement.
Thanks for that good information. I'm sorry it didn't work out for your husband.
My mother and her sister both had breast cancer. My mother had surgery without chemo and her sister had surgery and chemo. My mother passed away a good five years before my aunt, but my aunt lost all of her short term memory a couple of years before my mother died. You have to decide which scenario you prefer. My aunt that lived years longer didn't have much quality of life and it's pretty rough on the families as well.
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