Clinical trial with monoclonal antibodies? - CLL Support

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Clinical trial with monoclonal antibodies?

Tangolover profile image
24 Replies

I've been asked to participate in a clinical trial in which I get an infusion of monoclonal antibodies. The team is wanting to know if this would help those with blood cancers have higher resistance to Covid. Any thoughts? I will discuss with my doctor but wanted more feedback.

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Tangolover profile image
Tangolover
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neurodervish profile image
neurodervish

Hi Tangolover,

Thank you for posting about this.

I have many thoughts (mostly questions), the first of which is, which monoclonal antibody (mAb) are they planning to test? Is it a single mAb, or a combo mAb like Evusheld? How long is the trial? What's the trial called? How can we get in on that?

I'm very happy to hear that more research is being done on the topic of covid treatments for blood cancer patients. This is exciting news.

You may recall that mAbs have been in use for many cancer treatments, but also specifically for covid treatments. I took this screenshot (in Oct of 2022) that showed 14 different mAbs used against covid. This was back when we were dealing with the BA.2.75.2 variant, and as shown in the image, only Bebtelovimab was effective against it. Covid has mutated quite a lot since then.

PS - I'll never forget the day it occurred to me that all the mAb drug names ended in "mab." It was kind of an "aha" moment, but also an "oh yeah, of course" moment.

mAbs tested against covid B.1.1 - 2.75.2
Tangolover profile image
Tangolover in reply to neurodervish

Thank you for your response and positive attitude toward it! It is a newly produced monoclonal antibody directed at newest variants. The trial is by a group called Science 37. The title of the trial is: Invivyd, Inc. / “A Study to Evaluate the Efficacy and Safety of VYD222 for Prevention of COVID-19 (CANOPY)”. I imagine you can contact them at their website at science37.com

2016Longevity profile image
2016Longevity in reply to Tangolover

we just got contacted by Science 37 as well :-)

Tangolover profile image
Tangolover in reply to 2016Longevity

Are you going to do it?

2016Longevity profile image
2016Longevity in reply to Tangolover

We’ll let you know sometime over the following days / weeks. Next week hand surgery coming up though. First need to read all the info, collect all the questions, and probably also ask primary care physician, oncologist etc before giving consent.

neurodervish profile image
neurodervish in reply to Tangolover

Thanks for getting back to me. May I ask how they were able to reach out to you?

I found the name of the mAb: adintrevimab and a link with info from Invivyd. investors.invivyd.com/news-...

Here's the only link on clinicaltrials.gov that I could find related to adintrevimab: classic.clinicaltrials.gov/...

When searching clinicaltrials.gov for VYD222 I found 2 hits in Australia classic.clinicaltrials.gov/...

I dug around Science37.com and found this page with 5 studies listed, but none are related to covid or blood cancers. science37.com/patients

This link explains what Science37 does and offers a mostly positive review. Still, they share far more info about what Science37 does than Science37 does: scienceoxygen.com/is-scienc...

Personally, I will give this a pass. Like the Ciitizen [sic] Company (who oversaw & collected extensive cradle-to-grave medical data for the LLS antibody study), they appear to collect a LOT of private medical data (which they promise to de-identify). They use ai (machine learning) to integrate that data, and they can sell it to third party affiliates. I think it's important to understand that your data can be re-identified with as few as 9 data points, but you will be giving them thousands of data points because in addition to your blood for the study, they also want your medical records.

Apologies for raining on any parades. I absolutely support research and clinical trials (have been in 2 of them), I just don't want to give so much private data. Full disclosure: I've worked in IT for years and am especially interested in cyber-security, and all its related tentacles. I mean, it's all fun and games until the robots take over. 🙃

Tangolover profile image
Tangolover in reply to neurodervish

Thank you for the articles! Very informative!

I saw an ad they had put out on instagram, so I went to their site. They were doing research to determine if blood cancer patients developed antibodies from covid vaccines. All I had to do was get a blood test. I live in rural South Georgia so don't have the opportunity to participate in anything like this, so jumped at the chance. It all went very smoothly (and test results indicated that I DID have antibodies!).

neurodervish profile image
neurodervish in reply to Tangolover

I'm so glad that worked for you.

bachplayer13 profile image
bachplayer13 in reply to neurodervish

im sure you had to share private data re your other clincal trials....but i get being in it and being super paranoid my hb is one of those lol and i do understand. i've already shared my data with another clinical trial called all of us so i'm already in the cloud i'm sure. but i feel if i ican do nothing else these trials may give my puny life some tint of meaning

Tangolover profile image
Tangolover in reply to bachplayer13

Please keep me posted!

bachplayer13 profile image
bachplayer13 in reply to Tangolover

will do!

neurodervish profile image
neurodervish in reply to bachplayer13

Actually, no. To be clear, normal clinical trials do not involve 3rd party data management companies that demand access to all your medical records (from cradle-to-grave). With the help of ai (machine learning), this is a new business model built on data mining. In our for-profit medical & insurance systems, we don't yet know the ramifications of this. Experts insist that ai needs to be regulated, but it hasn't happened yet.

bachplayer13 profile image
bachplayer13 in reply to neurodervish

i agree with you on this! thanks so much for the additional info. oh well too late. i guess i'll be part of the ai experiment as well lol. but your points are so well taken!

bachplayer13 profile image
bachplayer13 in reply to neurodervish

let me ask you worst case scenario what you think they would do with my data. i already know i could never get an insurance policy due to cll and my health insurance co already knows about my cll and other conditions? what else could happen do you think?

neurodervish profile image
neurodervish in reply to bachplayer13

I have no way of knowing what all could happen with collected medical data, and I guess that's what worries me. We seem to be at an inflection point where amazing medical breakthroughs are becoming available (in some cases because of ai), and private data has become a big commodity for FinTech (financial technology sector, where your financial & digital data can be bought, traded & sold and used against you).

The good news is that the ACA (aka Obamacare) made it so that people with pre-existing conditions could no longer be rejected for health insurance. Republicans have tried to repeal the ACA (70 times + more than 2,000 legal challenges), but Americans overwhelmingly approve of keeping it, so fingers crossed. Sadly, we still have 27.6 million Americans with no health insurance. hhs.gov/healthcare/about-th...

Here are a few links that discuss how our private data is collected and what we can do. If this seems tangential to CLL, please understand that, here in the US, our for-profit medical & insurance systems are inextricably linked to our private data and finances.

Nine ways to safeguard medical data and protect patient privacy: thoughtworks.com/insights/b...

Your Online Activity Might Affect Your Ability to Get a Loan: roohanrealty.com/blog/onlin...

How your mobile phone tracks you (even when switched off): comparitech.com/blog/vpn-pr...

Google shares data with 4,206 corporate partners. A single partner (Hewlett Packard) has 5,883 partners (affiliates): partnerbase.com/google

Personally, I bought an unlocked android, uninstalled most of the apps and instead run opensource apps (including a camera & gallery) that don't collect unnecessary data. I use the Brave browser, I don't use social media or games on my phone, and I turn off my location. If I sound paranoid it's because I worked in IT. I've done what I can and it's probably not enough.

AussieNeil profile image
AussieNeilAdministrator in reply to neurodervish

Probably the most bizarre conspiracy theory to come out of the pandemic, was that vaccines contained microchips that could be used for tracking. Why, when our mobile phones do that so very well already?

This article from June 2021 reports on how this conspiracy theory got started and eventually incorporated the theory that "Gates, through his business and philanthropy, is trying to “depopulate” the planet." It also provides an insight into how misinformation and disinformation occurs and how difficult it is to counter.

Where did the microchip vaccine conspiracy theory come from anyway?

- How an innocuous Reddit thread mutated into a dangerous, viral lie

theverge.com/22516823/covid...

Neil

neurodervish profile image
neurodervish in reply to AussieNeil

Right? There are so many things to be legitimately concerned about. But to willingly ignore important problems like data security and instead make up (or just believe in) factually untrue conspiracy theories is crazy.

bachplayer13 profile image
bachplayer13 in reply to neurodervish

Well my husband also works in IT and he is equally paranoid although it’s funny he’s the one that’s gotten his identity hacked like three times and I’ve never had mine so far lol fingers crossed. I have a degree in computer science, so I am familiar someone with these issues, although my degree is ancient by today’s standards, and certainly doesn’t include cyber securiTy. Issues Thank you for the links. Greatly appreciated.

Tangolover profile image
Tangolover

The people told me that is is a newly produced monoclonal antibody directed at the newest variants. Their website is science37.com. Thank you for your response

Skyshark profile image
Skyshark

I pretty sure mAbs for COVID are given when someone is infected. Not much use at any other time, they don't stick around forever so won't be there when infected. They don't train the immune system like a vaccine.

Is this a phase 1 trial? Drug given to fit people to test safe dosage and side effects.

One of the links to trials that neurodervish gave is for pharmacokinetics, one is for use when in need and the US one is data collection after having mAb for COVID.

Tangolover profile image
Tangolover in reply to Skyshark

From what I read, it is not a Phase 1. That was done on healthy people. this is for immunocomprised.

bachplayer13 profile image
bachplayer13 in reply to Skyshark

not true they are given prophylatically to provide passive protection so you can avoid getting infected in the first place!! the antivirals are most ly used now for once you are infected. there were some that were given post infection but none of those work anymore. this particular one is supposed to provide pre infection protection like evusheld did...

Skyshark profile image
Skyshark in reply to bachplayer13

Evusheld has an half life of 80-90 days. That requires top up injections twice a year. It can be used as a double dose when someone has tested positive.

VYD222 seems to have a similar half life. Administration costs of IVs and capacity of healthcare system to deliver them is another issue. It's not going to be like a walk in for 2 injections in the rump and an one hour observation.

bachplayer13 profile image
bachplayer13 in reply to Skyshark

I remembered that evusheld was twice a year, but I did forget that it was an injection versus an infusion lol. Time flies when you’re having fun, I guess. The cost of the IV tubing to the health care system is not my concern. My concern is that there be some thing available for those of us that might need it in the future. Right now there is no monoclonal antibody that works and for some people they can’t take antivirals because of medication interactions so this would be their fall back.

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