Artie, you are King Arthur, 007, the most amazing Jedi knight all rolled into one to me!!!  No doubt!  Hang in there!!!  c

PS I have the online title as "Bubbles" as that is what my husband calls me…and I really am Celeste. Between this board and my blog, I am obviously "out"!!!!  Understanding who is saying what, when "anon" answers "anon", then asks a question of "anon" – gets really weird.  Not wanting your real life peeps to know who you are is certainly a personal decision…however, without your telling them (since some anon's are keeping their dx a secret apparently) I doubt they are going to come looking for you on here.  But, if you want the full support of this board…you would probably be more successful if anon's chose a consistent, unique "name" rather than using "anon".  But, clearly….folks can do what they think is best for them.  c

Hey Artie!!!!!

Friend of mine just sent me this, with you in mind: 

A Phase 1, Dose Finding Study of CC-90002,in Subjects With Advanced Solid and Hematologic Cancers

https://clinicaltrials.gov/ct2/show/NCT02367196

I don't really know much about it…but if you are at all interested, I can try to find out more.  Love you, c

PS Anons…..here's an example of the benefit of NOT being "anon".  When folks feel like they know you…even if you are using a fake "name"….you will allow others to communicate with you and sometimes even on your behalf.  Wishing you all my best.  Celeste

Thanks Celeste. Looks like this is anti-cd47. In easy terms that I can understand best that I can tell but could be wrong the med floats around until it detects the cd47 protein which is usually a lot of on the surface of cancer tumors. When detected it dissolves that protein. Thus hopefully making that part of the tumor viewable to our regular tcells so they can now destroy the tumor. Thus similar to pdL. Also similar to the mga271 med that targets the b7h3 on the must be biopsied first to qualify tumors. Might be wrong but that's the way I understood it when I read it. Maybe cd47 does something at the white blood cell level like pd1 but I didn't see it said anything like that.

Maybe I'm also wrong about pd1. The way I understand it the med floats around until it somehow detects a white blood cell. When it does it attaches and dissolves the pd1 protein. Then that activated tcell floats around and now hopefully can see a tumor then destroys it.

The trial I'm waiting for an opening is cd40. Somehow it combines both of what I understand the workings of pd1 and cd47 in one med except it's the cd40 protein. Thus basically a combo in one med.

Granted thats highly simplified understanding but that's the way I thought this stuff works. Maybe I'm wrong.

Artie

Thanks Celeste. Looks like this is anti-cd47. In easy terms that I can understand best that I can tell but could be wrong the med floats around until it detects the cd47 protein which is usually a lot of on the surface of cancer tumors. When detected it dissolves that protein. Thus hopefully making that part of the tumor viewable to our regular tcells so they can now destroy the tumor. Thus similar to pdL. Also similar to the mga271 med that targets the b7h3 on the must be biopsied first to qualify tumors. Might be wrong but that's the way I understood it when I read it. Maybe cd47 does something at the white blood cell level like pd1 but I didn't see it said anything like that.

Maybe I'm also wrong about pd1. The way I understand it the med floats around until it somehow detects a white blood cell. When it does it attaches and dissolves the pd1 protein. Then that activated tcell floats around and now hopefully can see a tumor then destroys it.

The trial I'm waiting for an opening is cd40. Somehow it combines both of what I understand the workings of pd1 and cd47 in one med except it's the cd40 protein. Thus basically a combo in one med.

Granted thats highly simplified understanding but that's the way I thought this stuff works. Maybe I'm wrong.

Artie

Hey Artie,

Figured you already knew about it…but, a friend had been researching, thought of you, and it was new to me….so….

I think you gave an excellent synopsis of all the above!  You are on top of this and such a resource and inspiration to all of us.  Keep on keeping on and let us know what you're thinking and decide to do.  Hope you have a good weekend.  C

Hey Artie,

Figured you already knew about it…but, a friend had been researching, thought of you, and it was new to me….so….

I think you gave an excellent synopsis of all the above!  You are on top of this and such a resource and inspiration to all of us.  Keep on keeping on and let us know what you're thinking and decide to do.  Hope you have a good weekend.  C

Hey Artie,

Figured you already knew about it…but, a friend had been researching, thought of you, and it was new to me….so….

I think you gave an excellent synopsis of all the above!  You are on top of this and such a resource and inspiration to all of us.  Keep on keeping on and let us know what you're thinking and decide to do.  Hope you have a good weekend.  C

Thanks Celeste. Looks like this is anti-cd47. In easy terms that I can understand best that I can tell but could be wrong the med floats around until it detects the cd47 protein which is usually a lot of on the surface of cancer tumors. When detected it dissolves that protein. Thus hopefully making that part of the tumor viewable to our regular tcells so they can now destroy the tumor. Thus similar to pdL. Also similar to the mga271 med that targets the b7h3 on the must be biopsied first to qualify tumors. Might be wrong but that's the way I understood it when I read it. Maybe cd47 does something at the white blood cell level like pd1 but I didn't see it said anything like that.

Maybe I'm also wrong about pd1. The way I understand it the med floats around until it somehow detects a white blood cell. When it does it attaches and dissolves the pd1 protein. Then that activated tcell floats around and now hopefully can see a tumor then destroys it.

The trial I'm waiting for an opening is cd40. Somehow it combines both of what I understand the workings of pd1 and cd47 in one med except it's the cd40 protein. Thus basically a combo in one med.

Granted thats highly simplified understanding but that's the way I thought this stuff works. Maybe I'm wrong.

Artie

Hey Artie!!!!!

Friend of mine just sent me this, with you in mind: 

A Phase 1, Dose Finding Study of CC-90002,in Subjects With Advanced Solid and Hematologic Cancers

https://clinicaltrials.gov/ct2/show/NCT02367196

I don't really know much about it…but if you are at all interested, I can try to find out more.  Love you, c

PS Anons…..here's an example of the benefit of NOT being "anon".  When folks feel like they know you…even if you are using a fake "name"….you will allow others to communicate with you and sometimes even on your behalf.  Wishing you all my best.  Celeste

Hey Artie!!!!!

Friend of mine just sent me this, with you in mind: 

A Phase 1, Dose Finding Study of CC-90002,in Subjects With Advanced Solid and Hematologic Cancers

https://clinicaltrials.gov/ct2/show/NCT02367196

I don't really know much about it…but if you are at all interested, I can try to find out more.  Love you, c

PS Anons…..here's an example of the benefit of NOT being "anon".  When folks feel like they know you…even if you are using a fake "name"….you will allow others to communicate with you and sometimes even on your behalf.  Wishing you all my best.  Celeste

Artie, you are King Arthur, 007, the most amazing Jedi knight all rolled into one to me!!!  No doubt!  Hang in there!!!  c

PS I have the online title as "Bubbles" as that is what my husband calls me…and I really am Celeste. Between this board and my blog, I am obviously "out"!!!!  Understanding who is saying what, when "anon" answers "anon", then asks a question of "anon" – gets really weird.  Not wanting your real life peeps to know who you are is certainly a personal decision…however, without your telling them (since some anon's are keeping their dx a secret apparently) I doubt they are going to come looking for you on here.  But, if you want the full support of this board…you would probably be more successful if anon's chose a consistent, unique "name" rather than using "anon".  But, clearly….folks can do what they think is best for them.  c

Artie, you are King Arthur, 007, the most amazing Jedi knight all rolled into one to me!!!  No doubt!  Hang in there!!!  c

PS I have the online title as "Bubbles" as that is what my husband calls me…and I really am Celeste. Between this board and my blog, I am obviously "out"!!!!  Understanding who is saying what, when "anon" answers "anon", then asks a question of "anon" – gets really weird.  Not wanting your real life peeps to know who you are is certainly a personal decision…however, without your telling them (since some anon's are keeping their dx a secret apparently) I doubt they are going to come looking for you on here.  But, if you want the full support of this board…you would probably be more successful if anon's chose a consistent, unique "name" rather than using "anon".  But, clearly….folks can do what they think is best for them.  c

Ed, I think you're funny!!  c

PS Have another Timmy.  Now they are saying it improves brain function!  Hee hee.

Celeste, happy B-day!  Saw the post on your blog.  I'm aiming for 42 on Sunday.  Ed, to the extent helpful, I think you're funny too, but I also have a weird sense of humor.  E.g., Celeste's shaming of the PhD student–like watching Game of Thrones in August.

See???  Awesome, right???  Hee Hee!!! c

See???  Awesome, right???  Hee Hee!!! c

See???  Awesome, right???  Hee Hee!!! c

Celeste, happy B-day!  Saw the post on your blog.  I'm aiming for 42 on Sunday.  Ed, to the extent helpful, I think you're funny too, but I also have a weird sense of humor.  E.g., Celeste's shaming of the PhD student–like watching Game of Thrones in August.

Celeste, happy B-day!  Saw the post on your blog.  I'm aiming for 42 on Sunday.  Ed, to the extent helpful, I think you're funny too, but I also have a weird sense of humor.  E.g., Celeste's shaming of the PhD student–like watching Game of Thrones in August.

Celeste, I think Ed is from the Ottawa area. That means he has access to Havery's. Especially poutine! Even though Tim's is ubiquitous in Canada (much like Starbucks here in Washinton State and maybe the rest of the US), the world doesn't know what it is missing when it comes to a Harvey's hamburger. It might even cure cancer.

Just my $0.02 for the funny theme!

Celeste, I think Ed is from the Ottawa area. That means he has access to Havery's. Especially poutine! Even though Tim's is ubiquitous in Canada (much like Starbucks here in Washinton State and maybe the rest of the US), the world doesn't know what it is missing when it comes to a Harvey's hamburger. It might even cure cancer.

Just my $0.02 for the funny theme!

Celeste, I think Ed is from the Ottawa area. That means he has access to Havery's. Especially poutine! Even though Tim's is ubiquitous in Canada (much like Starbucks here in Washinton State and maybe the rest of the US), the world doesn't know what it is missing when it comes to a Harvey's hamburger. It might even cure cancer.

Just my $0.02 for the funny theme!

Ed, I think you're funny!!  c

PS Have another Timmy.  Now they are saying it improves brain function!  Hee hee.

Ed, I think you're funny!!  c

PS Have another Timmy.  Now they are saying it improves brain function!  Hee hee.

Whatever you are talking about, it's not me.

Whatever you are talking about, it's not me.

Whatever you are talking about, it's not me.

I usually don't respond to Anonymous posts, but you should go back and read all of the posts (there are only 2 or 3) related to the PhD student.  This will give you what folks refer to as "context" for the most recent post.

I usually don't respond to Anonymous posts, but you should go back and read all of the posts (there are only 2 or 3) related to the PhD student.  This will give you what folks refer to as "context" for the most recent post.

I usually don't respond to Anonymous posts, but you should go back and read all of the posts (there are only 2 or 3) related to the PhD student.  This will give you what folks refer to as "context" for the most recent post.

How is anything Celeste does on her blog related to this conversation about how frustrating(awful) the anonymous post can be. Maybe if you took some time and read the previous posts by Celeste about Dana Hansen, you might gain some perspective.

Anon honey sweetie pie!!! 

First of all, I have a secret.  If you click on poster "names" and then check their board posts you can find out a good deal of info.  (I should have been a spy!)  That being said, YOU ARE EXACTLY RIGHT!!!!  Though you have failed to eschew obfuscation, you are correct.  Dana Hansen, PHD of Kent State nursing department is a bully….ON CANCER PATIENT BLOGS!!!!  Your use of the word "bullying" is exactly on point.  Bullying requires a disparity of power….in other words…one person with greater power pushing to impose their will on weaker individuals.  I ask you.  Who is the person of power in this circumstance?  The PhD medical professor?  Or the person blogging in extremis?  Bullying is something desperate cancer patients face a lot of.  From alternative therapies, to clinical trials, to highly regarded physicians and sucky ones, to family and society….cancer patients are pressured from every direction.  So much so, that guilt for acquiring the disease, complaining, utilizing resources, and even surviving…becomes common. 

Dana Hansen in her work with patients dealing with a variety of complex and devastating diagnoses, knows this.  Yet the message she leaves and the lame, lazy methods she is utilizing to attain data for her "work" is shameful and I cannot believe it passed any reasonable IRB.  It is insulting (much worse than that actually) to use living, breathing, struggling, fighting cancer patients who go to the trouble of blogging, to try to reach their families to see how THEY feel about the LIVING person's death!  Working through cancer programs, hospice, etc. would have been a way to reach out to many families who ARE dealing with the "death" of a loved one…but, dang….that would have required effort!!!  But, you already know this.  Yes, I will use any means necessary to improve the lives of cancer patients.  I will ALWAYS take up for ANYONE under attack, especially if they are a child or a cancer patient. (Weird I know…but that's just me!) I did not put a link to this post up, neither did Mat.  I find it very strange that you did, since you find it simultaneously heinous and "teenaged"!  But, thanks.  More folks needed to see the methods some anon's and Dana Hansen will use.  Have a super, drama free day!!!  celeste

Anon honey sweetie pie!!! 

First of all, I have a secret.  If you click on poster "names" and then check their board posts you can find out a good deal of info.  (I should have been a spy!)  That being said, YOU ARE EXACTLY RIGHT!!!!  Though you have failed to eschew obfuscation, you are correct.  Dana Hansen, PHD of Kent State nursing department is a bully….ON CANCER PATIENT BLOGS!!!!  Your use of the word "bullying" is exactly on point.  Bullying requires a disparity of power….in other words…one person with greater power pushing to impose their will on weaker individuals.  I ask you.  Who is the person of power in this circumstance?  The PhD medical professor?  Or the person blogging in extremis?  Bullying is something desperate cancer patients face a lot of.  From alternative therapies, to clinical trials, to highly regarded physicians and sucky ones, to family and society….cancer patients are pressured from every direction.  So much so, that guilt for acquiring the disease, complaining, utilizing resources, and even surviving…becomes common. 

Dana Hansen in her work with patients dealing with a variety of complex and devastating diagnoses, knows this.  Yet the message she leaves and the lame, lazy methods she is utilizing to attain data for her "work" is shameful and I cannot believe it passed any reasonable IRB.  It is insulting (much worse than that actually) to use living, breathing, struggling, fighting cancer patients who go to the trouble of blogging, to try to reach their families to see how THEY feel about the LIVING person's death!  Working through cancer programs, hospice, etc. would have been a way to reach out to many families who ARE dealing with the "death" of a loved one…but, dang….that would have required effort!!!  But, you already know this.  Yes, I will use any means necessary to improve the lives of cancer patients.  I will ALWAYS take up for ANYONE under attack, especially if they are a child or a cancer patient. (Weird I know…but that's just me!) I did not put a link to this post up, neither did Mat.  I find it very strange that you did, since you find it simultaneously heinous and "teenaged"!  But, thanks.  More folks needed to see the methods some anon's and Dana Hansen will use.  Have a super, drama free day!!!  celeste

Anon honey sweetie pie!!! 

First of all, I have a secret.  If you click on poster "names" and then check their board posts you can find out a good deal of info.  (I should have been a spy!)  That being said, YOU ARE EXACTLY RIGHT!!!!  Though you have failed to eschew obfuscation, you are correct.  Dana Hansen, PHD of Kent State nursing department is a bully….ON CANCER PATIENT BLOGS!!!!  Your use of the word "bullying" is exactly on point.  Bullying requires a disparity of power….in other words…one person with greater power pushing to impose their will on weaker individuals.  I ask you.  Who is the person of power in this circumstance?  The PhD medical professor?  Or the person blogging in extremis?  Bullying is something desperate cancer patients face a lot of.  From alternative therapies, to clinical trials, to highly regarded physicians and sucky ones, to family and society….cancer patients are pressured from every direction.  So much so, that guilt for acquiring the disease, complaining, utilizing resources, and even surviving…becomes common. 

Dana Hansen in her work with patients dealing with a variety of complex and devastating diagnoses, knows this.  Yet the message she leaves and the lame, lazy methods she is utilizing to attain data for her "work" is shameful and I cannot believe it passed any reasonable IRB.  It is insulting (much worse than that actually) to use living, breathing, struggling, fighting cancer patients who go to the trouble of blogging, to try to reach their families to see how THEY feel about the LIVING person's death!  Working through cancer programs, hospice, etc. would have been a way to reach out to many families who ARE dealing with the "death" of a loved one…but, dang….that would have required effort!!!  But, you already know this.  Yes, I will use any means necessary to improve the lives of cancer patients.  I will ALWAYS take up for ANYONE under attack, especially if they are a child or a cancer patient. (Weird I know…but that's just me!) I did not put a link to this post up, neither did Mat.  I find it very strange that you did, since you find it simultaneously heinous and "teenaged"!  But, thanks.  More folks needed to see the methods some anon's and Dana Hansen will use.  Have a super, drama free day!!!  celeste

How is anything Celeste does on her blog related to this conversation about how frustrating(awful) the anonymous post can be. Maybe if you took some time and read the previous posts by Celeste about Dana Hansen, you might gain some perspective.

How is anything Celeste does on her blog related to this conversation about how frustrating(awful) the anonymous post can be. Maybe if you took some time and read the previous posts by Celeste about Dana Hansen, you might gain some perspective.

if someone used their real name when they registered but now they want to change it to something fake, how do you do that?

Here's one way.  Under Find Support on the MRF homepage, select MPIP Community Profile Search which should take you to your own profile.  You can edit it from that page.  Just change your name and save.

Here's one way.  Under Find Support on the MRF homepage, select MPIP Community Profile Search which should take you to your own profile.  You can edit it from that page.  Just change your name and save.

Here's one way.  Under Find Support on the MRF homepage, select MPIP Community Profile Search which should take you to your own profile.  You can edit it from that page.  Just change your name and save.

if someone used their real name when they registered but now they want to change it to something fake, how do you do that?

if someone used their real name when they registered but now they want to change it to something fake, how do you do that?