AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by NF52 »

Chicagogirl wrote: Thu Apr 18, 2024 8:56 am .
Visit 31 – Week 50 (26th infusion) – UPDATE

So, there is one thing I should have mentioned in my last post:

Although I stared this journey on September 4, 2022, which was Visit 1A, there was a huge pause in progressing through the remaining various initial requirements.

My second visit which was the Amyloid PET scan wasn’t until February 22, 2023. After that came the MRI and TAU PET scan. Visit 6 (1st infusion) which occurred at Week 0 wasn’t until May 1, 2023 posting (Actual date April 25th).

There was a huge delay in getting my PET due to a new PET scanner not being available when they thought it would be. Additionally, there seemed to be problems obtaining the required tracer for the scan. The tracer issue seemed to be a national one. As I understand it this is not an issue now.

This visit at Week 50 (26th infusion) was my ONE-YEAR ANNIVERSARY.

It sounds confusing, but they label the first infusion Visit 6 as Week 0.


Thankfully, the process has become easier for everyone.

When I posted last week, it didn’t hit me that it was my 26th infusion so 52 weeks as you and I would look at it.

So hip hip hooray and a huge THANK YOU to my study site for putting up with my uncooperative veins and all my pestering questions.

From the doctor, receptionist, study nurse, the center infusion nurses, my home infusion nurse and all the various individuals that I have encountered (and those behind the scene) THANK YOU. I appreciate all that you do.

They are a wonderful group of people dedicated to slaying this dragon called Alzheimer’s, along with all the individuals working nationally in this field.

I am one year closer to infusions going from every 2 weeks to every 4 weeks. Can’t wait!

So, my journey continues……..

Whether you are a participant in a trial, or not, know we are all warriors in this quest to find a solution for all of us!

Till next time! Take care!


Lois
From my experience, Year 2 is so much easier--even if there are bumps in the road, it's a a road you're familiar with, with staff who know you, and a nurse who can find your vein (finally!!) The pace of MRIs slows dramatically to just two per year, there's not another amyloid and tau PET scan until next spring, and those quarterly cognitive tests that rotate become just another minor annoyance and one of many data points.

Most importantly, the risk of serious adverse events is exceedingly small in Year 2, and my own site says that they have not had anyone need to discontinue the AHEAD study due to ARIA-E or ARIA-H.

Take a well-deserved victory lap, Lois! And deep thanks for posting what it's really like to be in a prevention clinical trial.

Nancy
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

.
Visit 32 – Week 52 (27th infusion)

Visit 33 – Week 54 (28th infusion)


Both of these infusions were done by my Home Health Nurse and have become routine and easy. I find it is so much more relaxing do this at home instead of driving down into the city for the infusion there. Not all sites are able to offer this option.

Even my dog likes to get into it, by snuggling next to me on the couch. I would like to mention again, I don't know if I am on the actual drug or placebo. But whether I am on the drug or not, I feel like I am contributing to the long-term battle against Alzheimer's.

In my last post I mentioned that I have crossed over the 1-year mark.

I also thanked all the individuals that were involved in getting me to this point.

I would also like to thank and encourage all the individuals who post on this Apoe4 forum (not just the posts in this thread for the AHEAD Study Clinical Trial).......

You are all in your own way fighting the good fight against this disease. THANK YOU! I appreciate all that you do by posting about your own battles, concerns and suggestions for those with APOE 4 gene. I have found many of the postings fascinating and helpful. It is truly amazing the amount of knowledge on this forum.

So, my journey continues……..

Whether you are a participant in a trial, or not, know we are all warriors in this quest to find a solution for all of us!

Till next time! Take care!
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by gettingaheadofit »

Chicagogirl wrote: Mon May 06, 2024 1:28 pm .
Visit 32 – Week 52 (27th infusion)

Visit 33 – Week 54 (28th infusion)


Both of these infusions were done by my Home Health Nurse and have become routine and easy. I find it is so much more relaxing do this at home instead of driving down into the city for the infusion there. Not all sites are able to offer this option.

Even my dog likes to get into it, by snuggling next to me on the couch. I would like to mention again, I don't know if I am on the actual drug or placebo. But whether I am on the drug or not, I feel like I am contributing to the long-term battle against Alzheimer's.

In my last post I mentioned that I have crossed over the 1-year mark.

I also thanked all the individuals that were involved in getting me to this point.

I would also like to thank and encourage all the individuals who post on this Apoe4 forum (not just the posts in this thread for the AHEAD Study Clinical Trial).......

You are all in your own way fighting the good fight against this disease. THANK YOU! I appreciate all that you do by posting about your own battles, concerns and suggestions for those with APOE 4 gene. I have found many of the postings fascinating and helpful. It is truly amazing the amount of knowledge on this forum.

So, my journey continues……..

Whether you are a participant in a trial, or not, know we are all warriors in this quest to find a solution for all of us!

Till next time! Take care!
Dear Lois/Chicago girl,

Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.

I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).

I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”

I have spent the last hour reading just about everything that was in this thread and this is really helped.

so I *really* appreciate you & the others who have posted here.

I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.


** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**

I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information. 🌺💐❤️

Jennifer in NY
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by NF52 »

Nevada wrote:
Chicagogirl wrote: Mon May 06, 2024 1:28 pm
gettingaheadofit wrote: Sun May 19, 2024 6:14 pm Dear Lois/Chicago girl,

Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.

I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).

I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”

I have spent the last hour reading just about everything that was in this thread and this is really helped.

so I *really* appreciate you & the others who have posted here.

I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.


** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**

I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information. 🌺💐❤️

Jennifer in NY
Dear Jennifer,

On behalf of Lois, Nevada, the others who have gone through screening and posted on this topic and me--a 72 year old who will have my Week 128 visit in AHEAD-45 next week, please accept our warmest welcome. We will be there in spirit with you tomorrow for your disclosure visit and hoping that you take all the time you need to ask questions, let them know how today felt, and gently remind yourself that you also are generous, thoughtful, insightful--and do yoga, which I keep telling myself I will be brave enough to try!

It's perfectly normal to feel a rollercoaster of emotions during screening as you hear more about what this or any trial involves and learn what they can tell you of your testing results. Full disclosure: I heard of my elevated amyloid levels in March 2020 at the end of another clinical trial that ended early (I was on the placebo on that one.) I thought I was fine with the news, and had known for 6 years that I had ApoE 4/4. Yet a few weeks later, before our local gym shut down, I found myself doing more than "sniffling" in the parking lot. Not sure if anyone saw me, but it felt like a relief to let those feelings out.

Four years later I am in the third year of AHEAD in Virginia--as a transplanted Finger Lakes native. My Study Site Coordinator is someone I look forward to seeing, because I know she will want to hear of any "adverse event", even it's unrelated poison ivy. More importantly, she and the infusion nurse, the receptionist and everyone else knows me as a person, with a husband, three wonderful adult children and grandkids who I want to have many more years to enjoy.

No trial is without risks, but I believe each of us has the right to decide how our own values and preferences weigh the risks. No matter what you hear tomorrow, and whether you continue in screening to the baseline enrollment, we're here for you.

As a bonus, to help you navigate the site, check out our How-To Guide It has screenshots and step-by-step directions for almost anything you might want to do.

One tip: Lois and I have "subscribed" to this forum so we get an email of all posts. You can do that also by going to the title at the top of this page and clicking on the wrench icon below it (a "tool") to subscribe. If you want to quote someone so they get an email notification, just start with their post and click on the quotation mark icon in the upper right. That brings their post over in a text box to a "posting and editing" page for you to reply.

But mostly, just relax. We're in this with you.

Hugs,
Nancy
4/4 and still an optimist!
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Nevada »

Jennifer, I find the cognitive tests to be the most emotionally challenging part of the study and I used to administer them professionally. However after about three years of taking cognitive tests for the Ahead study I am more relaxed than I was earlier in the study. There are different sets of tests that are rotated every few months and different versions of the same tests. I continue to process the disclosure of my initial PET scan results years ago and work on maintaining optimism with the support of study staff, family, and this forum.
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

gettingaheadofit wrote: Sun May 19, 2024 6:14 pm

Dear Lois/Chicago girl,

Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.

I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).

I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”

I have spent the last hour reading just about everything that was in this thread and this is really helped.

so I *really* appreciate you & the others who have posted here.

I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.


** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**

I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information. 🌺💐❤️

Jennifer in NY
Jennifer
Reading your post brought a tear rolling down my face. It brought back memories of how I felt when I first learned about my APOE4 status. The feeling of being alone and not knowing anyone else who had this, or how to deal with it. Wondering what kind of life, I would have because of this. But you have found your group, your tribe.

I’m not sure what I would have done, if I hadn’t found 4 other ladies in the 2017 Generation’s Trial. It was comforting to know I could call or email someone who was going through what I was. One of them from that trial is in this one (NF52 – Nancy). I am forever grateful to her for her support.

For me, I believe the swim and exercise classes that I do, along with the volunteer work I do helps to keep me sane and not focused on my E4 status. Also, after almost 6 years of knowing and in my 70’s, I feel calm about my status.
I loved your statement from the movie, “First, you cry”. It really hit home. I will have to remember that.

I see where Nevada and Nancy already responded to you about your mental tests today, so I won’t. Except to say, “You got this!” After while the tests seem routine, although I dislike them.

Your comment also reinforced “why” I started this post. To reach out to all who wonder how a clinical trial works and the personal emotions one feels as they go through knowing their E4 status. Let us know the outcome of your visit today. We are with you.

So, welcome to a group, no one wants to be in. Just know we are here to support you as you go through it.

Lois
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by gettingaheadofit »

Chicagogirl wrote: Mon May 20, 2024 7:23 am
gettingaheadofit wrote: Sun May 19, 2024 6:14 pm

Dear Lois/Chicago girl,

Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.

I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).

I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”

I have spent the last hour reading just about everything that was in this thread and this is really helped.

so I *really* appreciate you & the others who have posted here.

I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.


** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**

I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information. 🌺💐❤️

Jennifer in NY
Jennifer
Reading your post brought a tear rolling down my face. It brought back memories of how I felt when I first learned about my APOE4 status. The feeling of being alone and not knowing anyone else who had this, or how to deal with it. Wondering what kind of life, I would have because of this. But you have found your group, your tribe.

I’m not sure what I would have done, if I hadn’t found 4 other ladies in the 2017 Generation’s Trial. It was comforting to know I could call or email someone who was going through what I was. One of them from that trial is in this one (NF52 – Nancy). I am forever grateful to her for her support.

For me, I believe the swim and exercise classes that I do, along with the volunteer work I do helps to keep me sane and not focused on my E4 status. Also, after almost 6 years of knowing and in my 70’s, I feel calm about my status.
I loved your statement from the movie, “First, you cry”. It really hit home. I will have to remember that.

I see where Nevada and Nancy already responded to you about your mental tests today, so I won’t. Except to say, “You got this!” After while the tests seem routine, although I dislike them.

Your comment also reinforced “why” I started this post. To reach out to all who wonder how a clinical trial works and the personal emotions one feels as they go through knowing their E4 status. Let us know the outcome of your visit today. We are with you.

So, welcome to a group, no one wants to be in. Just know we are here to support you as you go through it.

Lois
Thank you for the encouragement, also the reminder that exercise helps in ways other than the obvious. I’m glad I get a Lyft ride to the hospital right from home. I may have them drop me off in the city so I can treat myself & do something fun afterwards.
They pick me up at home and drop me off wherever I want which is nice. They seem to have been mildly amused when they asked what I was going to do after the previous appointments.

I’m answering these very kind replies using quotes because just maybe someone else who is new to the study will be encouraged by seeing what you guys have written.

If someone reading this is new to (or considering) this study, you could go back to the beginning of this thread or topic and read great blow-by-blow accounts from Chicago girl and insightful, helpful comments from several others.

This topic may be fraught with so much anxiety that people may feel a little bit frozen and not reply.

but know that all of you who contribute to this are helping many who may be quietly reading it, and it will be there for others later as well.

Sometimes I’m concerned because my writing’s not what it was, and I remember reading of a prominent person’s speech being compared/analyzed over the years.

Experts said the level of abstraction, ie the grade level of their missives had declined over the years.

But in a book I’ve been reading about the first survivors of Alzheimer’s (Bredesen)

one of the autobiographical essays said that her vocabulary/word retrieval, etc. improved after doing a certain protocol. I’m flooding myself with information now. But is a way that I try to think through & handle things which has served me in the past, even though it looks obsessive.

I may add some of my own commentary because there’s hardly anyone I can talk to about this. I’ve gotten a kind of a sympathetic “Why are you putting yourself through this” sort of reaction, & “it’s common sense - (ie diet exercise sleep) -the other stuff wouldn’t make a difference”.

Of course, this was spoken by someone who had never been a caregiver for somebody doing an excruciating slow fade through AD.

OK I’ll update after this appointment. My study partner/friend is busy but it’s fine that she’s not available. I’m going to record it on my phone. I think I need to process it by myself without somebody sitting there with me, supposedly for support but I who might feel self-conscious around.

with much gratitude for the considerable time you’ve invested to help others, and thanks to anyone else who’s written here as well- I read it all!

Jennifer
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by gettingaheadofit »

NF52 wrote: Sun May 19, 2024 6:47 pm
Nevada wrote:
Chicagogirl wrote: Mon May 06, 2024 1:28 pm
gettingaheadofit wrote: Sun May 19, 2024 6:14 pm Dear Lois/Chicago girl,

Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.

I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).

I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”

I have spent the last hour reading just about everything that was in this thread and this is really helped.

so I *really* appreciate you & the others who have posted here.

I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.


** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**

I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information. 🌺💐❤️

Jennifer in NY
Dear Jennifer,

On behalf of Lois, Nevada, the others who have gone through screening and posted on this topic and me--a 72 year old who will have my Week 128 visit in AHEAD-45 next week, please accept our warmest welcome. We will be there in spirit with you tomorrow for your disclosure visit and hoping that you take all the time you need to ask questions, let them know how today felt, and gently remind yourself that you also are generous, thoughtful, insightful--and do yoga, which I keep telling myself I will be brave enough to try!

It's perfectly normal to feel a rollercoaster of emotions during screening as you hear more about what this or any trial involves and learn what they can tell you of your testing results. Full disclosure: I heard of my elevated amyloid levels in March 2020 at the end of another clinical trial that ended early (I was on the placebo on that one.) I thought I was fine with the news, and had known for 6 years that I had ApoE 4/4. Yet a few weeks later, before our local gym shut down, I found myself doing more than "sniffling" in the parking lot. Not sure if anyone saw me, but it felt like a relief to let those feelings out.

Four years later I am in the third year of AHEAD in Virginia--as a transplanted Finger Lakes native. My Study Site Coordinator is someone I look forward to seeing, because I know she will want to hear of any "adverse event", even it's unrelated poison ivy. More importantly, she and the infusion nurse, the receptionist and everyone else knows me as a person, with a husband, three wonderful adult children and grandkids who I want to have many more years to enjoy.

No trial is without risks, but I believe each of us has the right to decide how our own values and preferences weigh the risks. No matter what you hear tomorrow, and whether you continue in screening to the baseline enrollment, we're here for you.

As a bonus, to help you navigate the site, check out our How-To Guide It has screenshots and step-by-step directions for almost anything you might want to do.

One tip: Lois and I have "subscribed" to this forum so we get an email of all posts. You can do that also by going to the title at the top of this page and clicking on the wrench icon below it (a "tool") to subscribe. If you want to quote someone so they get an email notification, just start with their post and click on the quotation mark icon in the upper right. That brings their post over in a text box to a "posting and editing" page for you to reply.

But mostly, just relax. We're in this with you.

Hugs,
Nancy
Nancy,

I was lying there on a bed with a sweet cat comforting me, of nervous but reading every word. I shut myself off from others in the house and was feeling kind of stuck - and then it was so nice of you to take the time for a long reply like that!

When your quick compassionate reply came to my post it really brightened my spirits. It’s also motivating to hear that you’ve been at this for a few years. If you don’t mind my asking, did you also do anything like getting your blood tested for levels of metals, etc. or thinking about possible exposure to mold., ?

I will see if there is a separate forum for people doing that kind of stuff. What a fantastic group this is!

Many thanks for the help,

Jennifer
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by gettingaheadofit »

NF52 wrote: Sun May 19, 2024 6:47 pm
Nevada wrote:
Chicagogirl wrote: Mon May 06, 2024 1:28 pm
gettingaheadofit wrote: Sun May 19, 2024 6:14 pm Dear Lois/Chicago girl,

Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.

I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).

I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”

I have spent the last hour reading just about everything that was in this thread and this is really helped.

so I *really* appreciate you & the others who have posted here.

I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.


** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**

I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information. 🌺💐❤️

Jennifer in NY
Dear Jennifer,

On behalf of Lois, Nevada, the others who have gone through screening and posted on this topic and me--a 72 year old who will have my Week 128 visit in AHEAD-45 next week, please accept our warmest welcome. We will be there in spirit with you tomorrow for your disclosure visit and hoping that you take all the time you need to ask questions, let them know how today felt, and gently remind yourself that you also are generous, thoughtful, insightful--and do yoga, which I keep telling myself I will be brave enough to try!

It's perfectly normal to feel a rollercoaster of emotions during screening as you hear more about what this or any trial involves and learn what they can tell you of your testing results. Full disclosure: I heard of my elevated amyloid levels in March 2020 at the end of another clinical trial that ended early (I was on the placebo on that one.) I thought I was fine with the news, and had known for 6 years that I had ApoE 4/4. Yet a few weeks later, before our local gym shut down, I found myself doing more than "sniffling" in the parking lot. Not sure if anyone saw me, but it felt like a relief to let those feelings out.

Four years later I am in the third year of AHEAD in Virginia--as a transplanted Finger Lakes native. My Study Site Coordinator is someone I look forward to seeing, because I know she will want to hear of any "adverse event", even it's unrelated poison ivy. More importantly, she and the infusion nurse, the receptionist and everyone else knows me as a person, with a husband, three wonderful adult children and grandkids who I want to have many more years to enjoy.

No trial is without risks, but I believe each of us has the right to decide how our own values and preferences weigh the risks. No matter what you hear tomorrow, and whether you continue in screening to the baseline enrollment, we're here for you.

As a bonus, to help you navigate the site, check out our How-To Guide It has screenshots and step-by-step directions for almost anything you might want to do.

One tip: Lois and I have "subscribed" to this forum so we get an email of all posts. You can do that also by going to the title at the top of this page and clicking on the wrench icon below it (a "tool") to subscribe. If you want to quote someone so they get an email notification, just start with their post and click on the quotation mark icon in the upper right. That brings their post over in a text box to a "posting and editing" page for you to reply.

But mostly, just relax. We're in this with you.

Hugs,
Nancy
Thank you so much, Nancy!

You guys are great. Rollercoaster of emotions indeed.

by the way, the yoga classes I take are mostly people of a certain age and they are not hard. We “work”, but anlso laugh and everybody does what they’re up for.

there might be four or five different levels of experience in any given class. I have found that to be true almost anywhere I go if I take a class while I’m traveling. I do tend to avoid classes that have the word “vinyasa” in the title. I gravitate to ones that say gentle, restorative, open level, or Iyengar.

I will try to pay it forward and include some of my own experiences and observations here with the hopes that it might help others. But maybe, selfishly, it’s also just to have a place to say things I can’t in my usual circle of friends and family.

Well, I just got the text reminder that my Lyft ride will be here in one hour. So I will leave this cocoon and head out for the disclosure. I don’t think I’ll be surprised, but I think it may hit me hard anyway hearing it in an official setting.

With much gratitude,

Jennifer
gettingaheadofit
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Joined: Fri May 17, 2024 11:47 am

Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by gettingaheadofit »

Nevada wrote: Sun May 19, 2024 8:32 pm Jennifer, I find the cognitive tests to be the most emotionally challenging part of the study and I used to administer them professionally. However after about three years of taking cognitive tests for the Ahead study I am more relaxed than I was earlier in the study. There are different sets of tests that are rotated every few months and different versions of the same tests. I continue to process the disclosure of my initial PET scan results years ago and work on maintaining optimism with the support of study staff, family, and this forum.
Nevada
Thank you for your contributions, Nevada. I really appreciate your taking the time to respond. The information you gave is helpful.

I just got a friendly text saying my Lyft ride to the hospital would be here in less than an hour so I suppose I should actually get up and get moving! You are a great group of people, & I look forward to seeing what else is in the forums.

Jennifer
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