donbob wrote:I am scheduled for Monday, July 15, for the PET scan results. I hope that will not be canceled. Guess I’ll find out today. I have a call in to confirm my Monday Doctor appointment to discuss the results of the PET scan. Hope they get back to me. It is a 100 mile drive one way.
Words don't do justice to your tears and your kindness. Life goes on for all of us (and today that meant getting a new haircut for "therapy"). I can't speak for other sites, or people at other stages in the trial, but found out today that I will still have an EKG, blood work, all those cognitive tests, and possibly a few new ones (please don't let it be "draw a horse") at the 2 year mark and another round in March 2020 along with an MRI as a final assessment. Apparently, we may be too valuable to stop studying just because we stopped the placebo or study drug.Indy woman wrote:I just saw these posts from yesterday, and burst into tears. Those tears are ones of sadness for all the wonderful people like blp and NF52, who have so bravely forged ahead, taking endless tests, traveling long distances, and getting spouses on board....
So, for the brave people who entered this clinical trial, I wrap my arms around you in solidarity. Know too, that there are many researchers and involved personnel at the study sites that are feeling your sadness too, like the Eli Lilly researcher and mother of my student.
We can all choose to look beyond today's disappointments and recognize that we may be on Frost's "The Road Less Traveled", a road filled with amazing people, experiences, views and more wonders than our deepest dreams--no matter the outcome.May your trail be crooked, winding, lonesome,dangerous, leading to the most amazing view...where something strange and more beautiful and more full of wonder than your deepest dreams waits for you -- beyond that next turning of the canyon walls.
Verax wrote:I am 4/3 and volunteered for Generation 1 through Banner, but after undergoing tests and scans was not entered in the clinical trial of CNP520 or placebo, because the scans and CSF didn't show enough amyloid beta. Of course, that was good news for me, as it reduced my chances of imminent LOAD. But I was assured that data would be shared, for example to refine the tracer techniques in the scans, so I was glad to try to help.
Last month, before the drug study was cancelled, I learned that at least one arm of Generation 1 continues without drugs, as a longitudinal observational study for some 1800 Generation 1 participants to follow up for five years with memory testing alone the natural history of those with 4/3, including those with normal memory, scans, and tests. This is important, as diagnosis of AD before autopsy has been uncertain and tests lack specificity and sensitivity. It is essential to try to refine predictions of disease in order to prevent instead of trying to treat.
I can say that I and my study partner have joined that Novartis study, which will continue for five years despite cancellation of the drug arms of Generation 1. That means that I can't also be subject in any other clinical trial for that time. The study will not share yearly memory testing results with me or my physician, but I can drop out at any time. Since no drug intervention is involved, there is no harm. The memory testing is similar or the same as earlier. Travel is paid. Maybe it helps, maybe it also fails. But I did want to encourage those who know their APOE4 results to join together and keep up the good work as here.
Even so, the Generation Program did do the right thing in finding those at higher risk because of Apoe status and aiming clinical trials at us. I am sure the CNP520 program end does not mean that we should be distressed. Our response has been overwhelming, to meet new friends like us, who will fight together against our common enemy. And it goes on, with or without drug companies, governments, or media such as NPR, we are no longer alone and abandoned.
Yes, and yes: the story of the researcher who was devastated and physically ill for two days when Solanezumab failed is important to hear. I could hear the efforts of the Generations nurse practitioners to not let their disappointment show when I spoke to them. Just weeks ago the director at my site spoke to me about his own mother moving into Memory Care, about his decision to be tested, "because if I had ApoE 4 I would want to be in a study" and his disappointment that studies have not been able to help people--especially those with diagnoses of AD. He added, "of course, we also recommend lifestyle and non-drug interventions for people to prevent MCI and AD. It's just that for some people we're going to need more."Indywoman wrote:... My main purpose was to show that there are real people behind the research at these drug companies who feel connected to the participants in the trials, and who have chosen to work at research labs to help make a difference. I spoke to many of them, as they were the parents of my students. These researchers working in these labs most certainly believe in the power of science, but science combined with making modifications in lifestyle factors as well...
I also think it is vitally important to acknowledge the real letdowns that follow disappointing results. Some cry mightily at first, others like NF52 get a therapeutic haircut (wow, I would have binged on at least a full sleeve of Oreos or perhaps five Butterfinger candybars)....How grateful I am to all of you for entering these studies! How beholden I am for all the people who made my asthma inhaler possible, not to mention my all time favorite pharmacological breakthrough, -the birth control pill. ...
hairyfairy wrote:At the end of May I volunteered to take part in a recognition study on alzheimer`s risk for apoe4`s. They took swabs for genetic samples & gave me a questionaire to fill out. I havwn`t heard back from them yest.
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