public information - Page 2

harrie · 11-12-2007, 11:24 AM

I know this is basic information, but a word of advise.....ALWAYS sign or log off when you are done in any online account (banking, email, investment, etc). This is not a 100% guarantee, but it reduces a significant amount of risk.

Andrea Barnett Budin · 11-12-2007, 03:12 PM

I have decided not to go incognito. I am not ashamed of anything I have said. It's all in my bk which I pray to finish and publish anyway.

I have thought of a pseudonym that I could post under. I will hold that thought in abeyance...

As long as the *lurkers* can't post without becoming members, I feel comfortable. I have received a lot of emails in the last wk from unknown sources and did not open them. Deleted. Reported as spam. For whatever that is worth. It gives me a sense of power...

Now I am left w/a bunch of INITIALS and the like to talk to on this board. Pp without names. Inexplicable artificial fictitious nonsensical new sign ins. It makes me sad. Difficult to relate to these posts or respond to them, sorry to say...

Sunshine

janet/FL · 11-12-2007, 07:42 PM

A suggestion:
I get private e-mails from individuals from the various groups I am on. This is good. Often they are from people who want to help with whatever question I have. But, like Andrea, I don't know who they are or what they want. Often I am sure I end up deleting ones that I would want--if I knew where or who they were from!

When I write to someone's regular e-mail, I put in the subject line
--
Off -(name of list)---- list and then add something to let them know what I am referring to. Such as

Off Her2 List--re: discussion of Herceptin side effects

Hopefully, the person will see it and open it. It sure beats the ones that I get that just say --"Hi"---And then may just by accident, be deleted!

lilyecuadorian · 11-12-2007, 09:40 PM

there is some pro and cons on this internet thing but I stay with the pro ...with out this site dont know where I can be ? so I dont care much about vulnerabllity of the site ..because looking from the good site ...help others ... help me ....help you etc that was the way how I find you girls ...

SoCalGal · 11-12-2007, 10:04 PM

Okay - no more pictures of me - it's freakin' me out...all I need is weirdos stalking me.

If only I could think of a new name that I could REMEMBER, I would change my name. I've always liked the name Andi. Maybe I'll be Andi2. I guess I could be Flori-duh. Or CaliFlornia. Flo no Eddie. Control freak? Maybe something Yiddish - Bubbah Kuggelah.

Margerie · 11-12-2007, 10:14 PM

LOL Flori- I vote for Bubbah!

Googled my name (unusual spelling) and found out there is a Lake and a Glacier Margerie. Googled Margerie breast cancer and didn't find any posts, but I did find an article about a dog named Marge who is a volunteer and a SURVIVOR herself. Glad I did. Here is the article:

http://www.medicalnewstoday.com/articles/53076.php

Marlys · 11-13-2007, 10:13 AM

I posted my last name and home address on the Tiptoe Itinerary thread and no one has hassled me yet. I agree with Andi, if they want me here I are! I have so many more important things to fret about than this. I know this is a very blase response and I apologize if that offends anyone. I just can't be bothered about who sees my posts here.
Love & hugs,
Marlys

dlaxague · 11-13-2007, 03:57 PM

There is some way to hide email lists so they do not appear in google searches. The bclist.org posts can be read at the archive site, but a google search does not bring them up, like it does for the discussions posted here. I don't know enough about it to understand if that's a possibility for what's posted here. Maybe it's different because this is a board and not a list? Joe?

I agree with sunshine/Andrea - I like to see people's names. Posts signed with names seem more genuine and sincere - more accountable. I don't know why that's so, but that's how it seems to me.

Debbie Laxague

harrie · 11-13-2007, 11:23 PM

It doesn't "bother" me per se that my posts may show up in search engines, but I believe it is definitely good to know of the possibility. Because, for example, what is someone just needed to post a complaint about their oncologist to get it off their chest or wanting an opinion for our group, and for some reason they mentioned the name of the person they are complaining about. That post will probably show up if you google the name of that doctor. A simple slip can open up a whole lot of "rubbish" hitting the fan if you know what I mean.
Harrie

sarah · 11-14-2007, 12:22 PM

very interesting! I'm not paranoid by nature but I know we all like to think we're just talking between ourselves.

Andrea Barnett Budin · 11-14-2007, 03:24 PM

Upon pondering this, I think I would want any one out there who is dx w/bc and is HER2+ and searching for answers -- to be blessed w/finding this board. I pray they would be led to US. And to me. And what I post is what I tell those who are sent to me -- friends of friends who are newly dx and a bit lost and entangled in the sudden immediacy of their lives being threatened. We all know the shock that choked us and sometimes returns to haunt and taunt us. Only one who has been there, done that can lift such a person up.

I can of feel this way -- every life has a story. I have no problem sharing my life's journey and the Lessons gleaned. I invite that. We are each here to love and help one another. By each I mean every Soul, not just each of us on this site.

I say, be who you are. Say what you feel. Those who mind don't matter. And those who matter, don't mind.

I'm getting comfortable w/being out there. Accessible. But am rethinking posting the city I live in and my birth date... I have decided not to post a different nebulous username. I stand behind everything I say. And I like being called by name. As I've stated, I also prefer to talk to others calling them by name -- for the record. If you are MSPP I just don't feel compelled to respond. Sorry. With loving energy. Living open to Universal Love...
Andi

Chelee · 11-14-2007, 03:52 PM

This board is so vauable because it IS accessible to the newly DX that are scared out of their minds and looking for help, support, & answers. As I mentioned in a earlier post I can't imagine what would of happened to me had I not ran across the Her2 support board. There were other bc boards...but this one meant more to me because it was for her2 women. I *wasn't* getting answers at my cancer center & it was making things even more of a nightmare for me until I found this board...thank God.

So if people can access posts from this board that does not bother me. I started off being "Chelee" and have stuck to that name. (Again, not my real name.) But I do like it when people use what appears to be a real name verses as you said Andi...something like "NRTYpphy" I hope no one takes offense to that because my intentions are good.

I rather they choose a name...even if its not their real name. (But you should stick to that same name and not change it.) If I wouldn't of had SO MANY problems at the cancer center I'm going to I would of used my real name. However people I correspond via my PM's or email...I do tell them my REAL name with no problem.

Chelee

Andrea Barnett Budin · 11-14-2007, 05:02 PM

Oh Chelee, YOU just jumped off the *page* and in to my heart. I FELT you. And it felt so REAL! Love you, sweet Sister... You are having such problems at your C Center???? That is not good. That is terrible in fact. Can you elucidate??? Even in a PM. But for all of us if possible. You should love your C Center. And each one who works there should love you. I cannot even begin to imagine any other way. It is essential to my wellness. Going for Vit H tmrrw. Getting psyched, in a good way. Soooo want to take a 6 mnth holiday. Just told Paul that I don't really mean that. By Day 3 I'd be midst panic attack and would be calling and demanding H on Sunday!!!
Andi

CoolBreeze · 03-11-2012, 01:25 PM

reported the above post as spam

StephN · 03-11-2012, 02:09 PM

Don't think you mean Andi's post, but one that has been completely deleted.

Nana2three · 03-11-2012, 03:56 PM

I appreciate being able to find this site but being a private person I am leery of putting up my picture or giving out TMI. There is always a price to pay and I just have to weigh the risks.

Having BC has made me feel vulnerable and my typical personna has always been in control and I'm not liking this feeling. After watching Living Proof last night, I feel fortunate to have something available to fight with today. Now if I could just find a new MS med they would let me take while on herceptin I'd be a happy camper.

Blessings,

Lani · 03-12-2012, 01:50 AM

Nana I have been researching papers the effect of herceptin on the central nervous system--her2 is important in the migration of the neural crest (precursor of the nervous system) in embryology, but not so much it seems in peripheral nerve repair in adulthood. It seems herceptin does have an effect on leprosy-- a good one, where there seems to be remyelination!

I am curious to find out whether being on herceptin and not your other MS drugs has a good effect on you.

My latest theory, since herceptin does not cross the blood-brain barrier, is that there might be an improvement of CNS injury (spinal cord or brain) due to an excess of Neuregulin -- it cannot bind to her3 peripherally as her3s are busy being bound up in her2-her3-herceptin complexes, leaving excess neuregulin to migrate to the CNS and improve CNS injuries.

Hope my theory is in some way correct and your MS does not suffer..

Dr.Ronald Levy at Stanford (inventor of rituxumab, the first monoclonal antibody approved--for lymphoma) once told me one of his colleagues' wife who had MS, had noted improvement while in herceptin.. Anecdotal, but intriguing!

Best of luck

Lani · 03-12-2012, 01:52 AM

Nana I have been researching papers on the effect of herceptin on the central nervous system--her2 is important in the migration of the neural crest (precursor of the nervous system) in embryology, but not so much it seems in peripheral nerve repair in adulthood. It seems herceptin does have an effect on leprosy-- a good one, where there seems to be remyelination!

I am curious to find out whether being on herceptin and not your other MS drugs has a good effect on you.

My latest theory, since herceptin does not cross the blood-brain barrier, is that there might be an improvement of CNS injury (spinal cord or brain) due to an excess of Neuregulin -- it cannot bind to her3 peripherally as her3s are busy being bound up in her2-her3-herceptin complexes, leaving excess neuregulin to migrate to the CNS and improve CNS injuries.

Hope my theory is in some way correct and your MS does not suffer..

Dr.Ronald Levy at Stanford (inventor of rituxumab, the first monoclonal antibody approved--for lymphoma) once told me one of his colleagues' wife who had MS, had noted improvement while on herceptin.. Anecdotal, but intriguing!

Best of luck

ElaineM · 03-12-2012, 03:17 PM

This is exactly why I am very careful about posting personal information online no matter where I am posting. I still do not bank online and all my e-mail and other accounts do not have my full name, complete contact information or medical history.
Many of us also signed hippa documents protecting our privacy in our doctor's offices. If our hospitals allow us to access our own medical information online we need a password to do so.
We have experienced spam at her2support.org. No one knows what information the spammers and other visitors are gathering about us. We want to be able to share information freely and help each other, but we still have to be careful about very personal information everywhere online. I agree with Marynne.
Do an internet search on your name and see what comes up. You might be surprised.