public information

[harrie]

I am probably the last one to realize this, but ANYTHING you post onto this website has the potential of being viewed publically outside of this online site. The reason I say this is because at least 2 of the messages I posted, showed up in a google search. This public viewing was not only of my message, but all my personal profile that shows up each time I post a message here.
I was a little shocked when I saw that. I'm fine with it, but I think it is good for all to be aware of.
Maryanne

[Grace]

I only became aware of this when my novel was published and along with reviews of novel, etc. my postings on this site were also displayed. I asked that my full name be removed from the list, which Joe did, and I haven't seen any more of my positing, but it's possible if someone searched for something about which I've written on this site (tumor markers) for example that my posts might be displayed. That's also the reason I removed my picture from my posts. I noticed that some women don't use their actual names, even in their signature, which is another way to protect one's privacy.

[harrie]

Yes, I think I should also reconsider using my real name and removing my pic also. I think it is nice "seeing" who you are communicating with and I have made some wonderful contacts through this site that have helped me more then anything through my ordeal esp with chemo. I got use to signing off with my real name because it just felt like the right thing to do, but I need to reconsider.
Harrie

[Andrea Barnett Budin]

Oh Maryanne! That is initially alarming. Not that I don't stand behind all that I have ever posted, but it was for Sisters and Bros only. What was it you were googling? Just curious... Want to see if I can find myself!

I have a new name picked out. I may consider posting a pic of me in a birkha, w/only my eyes showing, sitting cross legged and totally out of sight. (I once saw a Muslim woman on television who looked exactly like that. She was seated beside her lawyer. She did not speak. She was suing the state of Florida for denying that picture of her as identification on her driver's license! The sight was absurd. Yet real.)
Madam X

[harrie]

The two that I know showed up on a search engine would be the thread where this person was looking for an oncologist which I had responded to and the other one was the PMPS (post mastectomy pain syndrome) thread. My friend had googled PMPS and my message on that thread showed up, picture and all. She was so surprised!! Then another time she googled the name of her doctor because she likes to check periodicaly to see if there is anything new under his name and again my entire post came up because I had mentioned his name.
If you would like to ck this out for yourself, go to google, type in POST MASTECTOMY PAIN SYNDROME, then go to page 2 of the listings and you will find it.
Harrie

[Debra]

Well I just googled my name (never done that) and didn't have anything from this sight come up----however, a sight with a bodacious (spelling) blonde in some sexy attire popped up with my name in big letters all over the screen!! Apparently some sexy t.v. personality shares my name!

I do know this concern was posted awhile back as well but apparently if your full name is not used, it isn't too big of a problem. Of course I read this post minutes after I posted my picture for the first time!!

[PinkGirl]

Madam X

If you Google Andi BB you will get your recipe for cranberry relish.
If you Google Andrea Barnett Budin you will get the "Gaining Control"
thread and the "Vit H, CHO" thread.

There was talk about this awhile back. Some gasped and some already
knew about it.

[Andrea Barnett Budin]

Don't know where I was that day, Pinkie, but today -- I am here! AND I AM GASPING!! Too bizarre!

[Chelee]

I found out about this over a yr ago when I was googling something. I found many of my posts from the her2 board and the breastcancer.org board. I am uncomfortable with just anyone finding my posts & that is the main reason I will not put up an avatar or use my real name. (Although, I wish that I could.) Its nice to put a name with a face together. :)

I've had too many problems at the cancer center I go too and didn't like the idea of *them* finding, & seeing what I post...so therefore I remain to all as Chelee. (Of course, not my real name.) As far as I know there is no way around this other then to make a board totally private by invite only. Which would be sad to do because this board is so important to someone that's just been DX her2/neu and is scared to death needing information. There is no other board that comes close to this for her2 as everyone here knows. I can't imagine what would of happened to me had I not ran across this board. (I don't want to even think about it!) You can't get this kind of information anywhere else so for now the only thing to do if you don't want people to run into your posts via google or other search engines is to change your name and remove your avatar.

Chelee

[hutchibk]

I worried about this a couple of months ago when many of us got a weird PM from some interloper... I have changed and removed some of my more identifying info and asked Joe at the time to change my user name a little. I am still considering tweaking my user name a little more so that it is less googleable. Not that I am on the lamb or hiding from anyone, or am I? LOL

[Sheila]

Harrie
When I googled Sheila I got everything from an Irish Dancer to a Porn Star....when I added Her2 My Name showed up on posts.

[PinkGirl]

Brenda, you mentioned that several months ago, some of you received a PM from somewhere. I thought that lurkers could just read the posts. I thought you had to be "signed in" to post PM's and look at the member's list. Yes? No?

[Joe]

About a year ago, we did have some problems of members receiving unsolicited emails.

We have since tightened up our registration, so that only registered members have access to our member list.

If any members receive any spam through our personal message feature, please email me and the sender will be deleted and prevented from re-registering.

We have no problem with members not revealing their real name or personal data as long as you use only that name for posting messages.

Through the User CP, any member can hide their email address from others.

Warmest Regards
Joe

[weezie1053]

Appreciate the heads up. I work in a pretty public place. I did google my name with "her2" and "breast cancer" and I got zip. There were several stories related to my employment.

[PinkGirl]

Hi Louise
It is our "user names" that are coming up in Google. If you google weezie1053
your her2 posts will come up.

[weezie1053]

I went back and entered my user name, and one of my posts came up.

Thanks again.

[janet/FL]

Weezie
I Googled your name, weezie1053 and probably all of your posts showed up. I, too, have worried about this for myself as I use my sign in for most of my posts on the web, and I can Google those from this group quite readily.

http://www.google.com/search?q=weezie1053&hl=en&client=firefox-a&rls=org.mozilla:en-US:official&hs=0J4&filter=0

[madubois63]

This is the World Wide Web. If someone wanted your information bad enough, they wouldn't need your user name and the goggle search. I use a laptop and have my own home network (wireless router). Sometimes, I can use my neighbors wireless service, and I am just somewhat computer savy. I know people that know how to break in to someone else's computer and plant and copy files. Imagine what someone can do if they really knew what they were doing...? It surprises me that people are so unaware of how much of their personal information is out there. If you are on the internet, you take the chance of sharing all your personal information with the world unless you take SERIOUS precautions to protect yourself. AOL Firewall is just not enough. I have typed in my daughter's and her friends screen names and pieced together the schools they go to, the after school activities they attend and so much information that it scared them silly...

[PinkGirl]

Madame Dubois is so right (again) ........we are all out there for the finding, with or without the Her2 site.

The general names like Joe, Sheila, etc. are the best because there will be thousands of other hits, but there can't be many weezie1053's out there.

I googled Brenda H's new name "hutchibk". It was cute.....there were a few of her posts, but google asked me if I meant "hot chick". Maybe they do know who you are Brenda!!! (better than "hatchback")

[harrie]

Yes Madame Dubois is right, there is that vulnerability with electronic information. That is the price we pay for access to so much information. I would be feeling very isolated over here where I live if I did not have this access.
I googled "harrie" and there was a monumental amount of listings under that name! My HER2 info was like a tiny needle in a haystack.

[harrie]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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 http://cdn-cf.aol.com/se/smi/0201e05fca/06

[Chelee]

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]

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 http://cdn-cf.aol.com/se/smi/0201e05fca/06

[CoolBreeze]

reported the above post as spam

[StephN]

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

[Nana2three]

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]

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]

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]

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.