who is lani?

[sarah]

Hello Lani,
I am a great fan of yours and read your posts with interest but I must admit, particularly after reading many posts wondering about you and calling you various names, that I am curious about you and who you are.
We are like a family here on the HER2 site and I like to believe a very trusting and well intentioned family and I wonder why you choose to be so anonymous?
I believe that your intentions are good and helpful but then why do you wish to be so anonymous? are we so untrustful or dangerous to you?
I would like to know you better but I respect your choice to be anonymous but because of that I feel a certain distance.
Keep posting your wonderful and informative posts and hopefully one day you will be able to trust us as we trust and respect you.
be well
Health and happiness
love sarah

[rhondalea]

I put a high value on Lani's posts--I learn a great deal from the information supplied, and I'm in awe of the generosity that allows her to expend what is clearly a large chunk of time contributing here.

Even not knowing anything at all about her, I consider her a friend, because she acts as a good friend does.

Back in the bad old days of usenet (before all the web forums), it mattered to me to know the individual behind the nym. It bothered me that some folks refused to say who they were and to disclose personal information. Over time, I came to understand that it really doesn't matter. Just as anonymous monetary donations to organizations often confer great benefit, anonymous reporting of knowledge has its own value.

Given the state of the internet, it is not always safe for some people to post with identifying information. Years ago, I had a friend who posted anonymously because he worked for NASA, and he was fearful that having his real name known would compromise his job. I've known others in similar circumstances. Heck, I've been in situations where it would've been better for me to be anonymous, but, unfortunately for me, I wasn't.

This site can be googled. I've already had one person find my posts here, so even though I've kept my diagnosis out of the forum in which we both post, he knows I have cancer. That fact has had an impact on our interactions--even though he has kept the information to himself, he drops hints to me about his knowledge more often than I'd like.

I hope that Lani will continue to post here for a long time. If she wants to tell us about herself, I'd be happy to know more, but I'm just as content if she chooses to remain an anonymous force of goodness among us.

[sarah]

I totally agree with Rhonda and know that the internet is tricky but happily this site seems to be very open. sorry you've had problems, it's horrible when that happens.
yes, we all appreciate Lani's posts, whomever she or he is.
take care
sarah

[ElaineM]

Whatever you post here is available to anyone on the internet world wide. Joining as a member of any site and posting opens one up to everyone in the world knowing one's business no matter how personal. Nothing is confidential. Someday do an internet search on your member name. What you find should enlighten you. It enlightened me.
Most of us signed HIPPA forms at our doctor's office and have a right to privacy regarding our medical history and personal problems.
We can still help each other and share information and still remain private. We can be selective about what we share if we wish to do that. It is the choice of each individual member. All are welcome here regardless of how much each person wants to share with the entire world about herself or himself.
I am with Lani. I think she has a right to remain private about her health history and her personal indentity if she wishes.
For all we know Lani might be a pen name of one of our board of directors or medical advisors listed on our front page. Now wouldn't that be interesting?
The information Lani wishes to share seems reliable. I for one have read alot of the information and learned from it. It adds to my knowledge of medicine and health care most of the time regardless of whether or not it applies to me.

[Ellie F]

I asked a similar question shortly after joining the board. I didn't get a response so I guessed that Lani perhaps wanted to remain anonymous.I even had a mad thought that Lani may be a man and using this name for the board.
I think Lani is very caring to us all and I appreciate her posts as they often bring so much hope for the future.
Whether she is a Dr, scientist, nurse or researcher I hope she will continue to support us on the board.
Ellie

[Jeanette]

Just wish I was as up on things as Lani, but this 72 year old just does not understand a lot of what is being said. Hopefully she or he whatever the case may be will on this site for a long time. Heck I have to go over and over things with my onc. but he takes it in good stride., Jeanette

[Jackie07]

Lani is, as far as I can tell, a fellow Her2 breast cancer survivor who's knowledgeable of the biomedical field. She's well connected with other scientists/researchers and she has been generously sharing her time/effort with us since at least mid 2005.

There's no reason why anyone needs to share anything more than they've already had. The truth is, we don't even know if half of our fellow survivors are using their real names/telling real stories/... Not to mention there are spammers hanging around everyday!

From the 'Members List', we can figure out when a member first joined this group. We can locate all the previous postings using the 'Search' fuction. (Many members deleted their personal information a year or two ago out of the concern of spammers/invaders/Phishers...) Most of us have introduced ourselves when we first joined the group. But some didn't bother with it. Many of us have shared detailed personal/medical information during discussion, but some chose not to do so. Just as I appreciate others' being tolerant to all the personal stories/opinions I've shared (and/or 'forced upon others' :), I respect members' choice of privacy.

In the Cyber space, anyone can paint a totally different picture of himself/herself. The purpose/function of this group is to share information/support among fellow survivors/their loved ones/supporters/... Let's continue to use our 'imagination' to paint a picture/write a biography/tell a story ... of our fellow survivors on this board...

(Just my two cents... :)

[Laurel]

Ok. This is a good thread! Why? Because we all have wondered about the mysterious Lani. Even Joe swore he did not know who she was. I think every lady needs an air of mystery about them and Lani does just that with flair!

Anyway, I think it might be fun as Jackie has, but I will be much more silly (well now there's a surprise!), to describe who WE think Lani is in our mind's eye. So here goes!

When I envision Lani in my mind I see a tall, blonde woman in her forties walking briskly in an airport terminal somewhere in the world. She strides along with rolling suitcase behind her as she dashes to make her gate headed to yet another research conference. I even see her in heels (sensible pumps, of course), a lab coat billowing in her wake, and she has very nice legs (of which I am completely jealous for the record, Lani!). In my mind's eye Lani is not American, but hails from Scandinavia. I think she is brilliant and is involved in research. I have never considered the notion of Lani being a fellow Her2 survivor, interesting twist there, Jackie.

Ok, someone top that! How do you picture our mysterious resident propeller head Lani?

Lani, I hope you do not mind a bit of fun here. Please do not feel that we are trying to "OUT" you. Never! We love your air of mystery!

[Mandamoo]

Lol!
I love logging on and seeing that there are posts from Lani - she has always responded to my questions as well.
I must admit that I made a probably incorrect assumption that she was a person in the medical field who posted here perhaps by contract with the site administrators. You all now have me intrigued.
I too love the air of mystery and am ever so grateful for Lani's postings whoever she (or he?) may be.
Lani - I "love" you!

[SoCalGal]

Alright, I'll admit it, I'm Lani.

[rhondalea]

I am Spartacus.

[Soccermom]

I like to think of Lani, (be she male or female) as a person who is devoted to making certain we can make the best choices in treatment of our disease by giving us the information we need to make educated and informed decisions.

Thank you Lani!

Marcia

[Cathya]

Hi all;

Actually it seems to me that Lani did discuss herself once.....likely in 2005 or 2006. I am only sorry my memory is so bad that I can't recall the details. I'm just very grateful she's here for us all. Thank you.

Cathy

[Lauriesh]

Yes Cathy,
I also remember Lani discussing her background early on. What I remember is that she was diagnosed early stage and was not a dr, but had a medical background.

Thats all I remember. Hopefully she will correct me if I am wrong.

and thank you Lani for all of your research. You have helped me numerous times, when I was pushing my dr for a certain treatment or to give me hope of possible future treatments.

Laurie

[ElaineM]

I am thankful for Lani's participation.
It doesn't matter who she or he is. If Lani wishes to remain private it is her or his right to do so. Let's all just accept Lani and be thankful for Lani's participation and not expect more of her or him than she or he is willing to share.
Thank you Lani for years of participation in this site and your dedication to trying to help us understand breast cancer.

[tricia keegan]

I agree with Elaine but think Lani will be smiling at this thread, I dont care if she wants to remain private but love her posts here and thanks Lani!:)

[Jackie07]

Lani's statement on 9-1-2009:

"I have no qualifications to make my opinion worth anything--having just read a lot of the medical literature and had an active imagination.}}"

2-05-2006:

"I am not an attorney--just recording what I have gleened over the years."

2-03-2011:

"I almost NEVER make any recommendations on this site, but I would seriously recommend you reconsider your decision to do ..."

2-22-2011:

"I met Dr. Juliann Smith at the lunch table betweeen sessions at a conference hosted by Dr. Neil Love in May 2005. She was one of maybe 100 participants in the audience. It was at this conference that Dr. Love met her as well and decided to let her tell her story in his audio journal. Here is a bit of the dialogue--feel free to google and listen to the full audio as it is quite moving, especially when she discusses her experience with chemo.
…
Every person who has unexpectedly stepped off the edge of this planet into the bottomless pit of life-threatening illness knows that the view from down there is very different and that no amount of bargaining with whatever or whomever one believes in changes the reality that to survive, it is essential to be able to reach inside to find faith and courage."

2006

At the Genentech stockholders' meeting (I am not one) they were asked about their post-marketing surveillance and described their's (finding out what problems people were having with their drugs after clinical trials are over and they are being used by greater numbers of people--when more people take a drug, new problems are usually discovered which may be rare or only happen in a subgroup of patients).

5-2011

"Have a different story.
Repost of one of threads I started:

Lani
Senior Member

Join Date: Mar 2006
Posts: 3,895
more in the "soy saga"

I had been under the impression that whether or not soy might increase or decrease the chance of recurrence of bc was related to ER/PR status but now two studies one out of Japan and one out of Korea (below) say soy's effect on recurrence more likely depends on tumor's her2 status. The article below is based on a small number of patients, but the full article refers to the Japanese study and is very interesting...

Nutr Cancer. 2012 Jan 2. [Epub ahead of print]
Differential Influence of Dietary Soy Intake on the Risk of Breast Cancer Recurrence Related to HER2 Status."

1-2-2005

"Previous comments have been made on the need to be discriminating when reading articles on breast cancer studies performed in vitro(in petri dishes or test tubes) or in vivo (in rats or mice usually) utilizing breast cancer cell lines. One thread recently posted on this site had to do with whether flaxseed was good or bad for her2+ breast cancer and listed a study performed by someone in Nutritional science on a breast cancer cell line implanted in mice that turned out to be both estrogen negative AND her2 negative!


I found a nice list of breast cancer cell lines which specify whether or not they are her2+. It still does not tell which are ER+, but it will help one spot right away whether the study was done on her2+ or her2- breast cancer cells and thus help those of you with her2 positive breast cancer have an idea whether the study has any likelihood of providing information useful to your case"

[And we have thought Greg (gdpawel)was the one taught us about the difference between 'in vitro' and 'in vivo'... :) Jackie07]

Quoted by NEDenise recently:

Hi All!
Here are Lani's instructions, copied from another thread, about how to find info about [x, y, and z].

"go to the yellow bar above and click on search.

put in Lani xyz (that should cover the subject in the search) I have provided info from at least a dozen articles over the years I would think

Otherwise be a DIY (do it yourselfer) and go to google and put in
Entrez Pub Med
once you get the right entry click on it and put
erbb2 [= Her2] xyz into the search box

you will find hundreds if not thousands of articles"

[Mtngrl]

Beautiful.

[RhondaH]

This is from 4/12/2006...and Lani was even gracious to call me and talk to me (about this time)...she is VERY informed and has a wealth of knowledge...I ALWAYS put a post by Lani WAY up there...

"My genetics and biochemistry background are ancient history--undergraduate degree in biology with lots of biochemistry taken, 2/3 of a year of graduate work in medical genetics, all more than 30 years ago.

Have been reviewing the literature on the web on a voluntary basis as a way to help friends with cancer over the past 8 years--NKT cell lymphoma, rhabdomyosarcoma, cutaneous Tcell lymphoma, Acute Lymphocytic Leukemia, nonsmall cell lung cancer, triple negative breast cancer, etc. I even went with some of them to their doctors' appointments. Three years ago the "dress rehearsals" of doing so came in handy as I started researching my own family's cancers--squamous cell carcinoma of the parotid and islet cell tumor of the pancreas.

So all the articles I have read over the past 8 years about the different kinds of T cells and oncogenes and tumor suppressor genes has certainly been new to me, my previous education gave me a very dated general background for it but did not really prepare me for its complexity--but I didn't let that frighten me away from trying to read it.

I try to be careful in what I post so as not to give anyone the impression of being authoritative in any way (except about "ganglions"!). Whatever "knowledge" I had about the biology, physiology, immunology and chemistry of cancer is three decades old. But what I have gleened from my attempts to review the literature is the fact that it IS possible to look up the same articles that medical researchers and oncologists read if you are not afraid(and knowledge is liberating!)--and that is what I try to ENCOURAGE others to do."

[sassy]

For a minute I thought I was Lani when Laurel started describing her......

".........When I envision Lani in my mind I see a tall, blonde woman in her forties walking briskly...and she has very nice legs....."

.....maybe not.

[Lien]

Oh Lani is not at all a tall blonde! I'm quite sure she is of African American descent with gorgeous big brown eyes and she walks like an Ethiopian Empress. She has a great sense of humor and her whole being radiates warmth. She has a sharp mind and a quick wit. She is in her early fifties but looks ten years younger. I can just picture her, sitting in front of her computer, reading a new article that has caught her interest.

I would love to meet her!

Jacqueline

[Estelle]

Sassy, you are too funny!

[Rolepaul]

I get the feeling Lani had someone close that had a cancer issue and decided that she would take on the job of informing others of options. I know she is good at research and finds the articles that are pertinent to this board. Her response to the research is really well thought out. She is well respected among leading BC people to meet those she has. Lastly, her privacy is one that I respect. I understand that her position in an organization may be at risk if there was knowledge that she were responding with the technical level she does. I am in the same boat. My company does not do any cancer research or make any medications for that area of treatment. Despite that, I am not allowed to give my opinion openly on any matters without corporate approval. However, in my current role (as Rolepaul) I can give the information that I know on drug development, past history of work on cancer diagnostics and therapeutics, and let you know how my wife Nina is doing with her BC to Brain/Spine mets struggle.
By the way, if Lani is who I think she is, she is about 5'4" with clurly dark hair. She might be outside of DC or in the SF bay area as I have heard both for a particular individual. If I am correct, I understand even better why she stays in the shadows.
I vote Lani for FDA commissioner.

[suzan w]

I think Lani also does research for NCIS, one of my favorite shows. They always have the "brainy one" who comes up with just the right information at the critical time to help solve the case! And with a great sense of humor too!!! Thank you Lani for your mysterious ways. I, too, love it when you post something new!!!

[PinkGirl]

This is what I know about Lani ... with certainty:

1) she lives in an old apartment building in New York City.

2) her walls are papered with tinfoil.

3) she often wears a metal collander on her head.

4) she has 55 copies of Catcher in the Rye.

[tricia keegan]

Lol Pink, I'm amazed she can bear not to respond to all this!!!:)

[Mtngrl]

I love Lani, whoever he or she is.

[Laurel]

Hey, Sass, your gams are just fine!

[Laurel]

BTW, guys, you have so NOT disappointed me! And just for the record Lani is slated to be the model for Mattel's newest Barbie: Bio-Barbie! This one will have long hair (of course, it's a BARBIE), long bendable legs, toes pointed, dressed in a lab coat over a very stylish dress. To make sure every little girl on the planet knows she is brainy she will have wear glasses!

I for one will be keeping mine in the box for the next 50 years so it is worth serious shekels to collectors! Keep an eye out! It should hit the market any day now!

[CoolBreeze]

It never occurred to me to even wonder "who" Lani was. It's obvious to me - she's a smart woman who likes to post interesting research.

Now you all have me wondering if she's some movie star or something. Hey, I know one or two had HER2 cancer. Lani is a pretty glamorous name.

[radiant]

I Love Lani too / she provides more hope
with her Amazing research posts than anyone
I know / and I've been doing this for 7 years!!

Kim

[schoolteacher]

I love you, Lani. Have a great day.
Amelia

[michka]

Thank you Lani for giving your time to try to make our group stronger through information and knowledge. It helped so many of us. Michka

[ElaineM]

If I were Lani and saw this thread I would never post here again !!!!!!!!!!!
Lani please excuse some of the comments made by people in this thread.
We love you and we appreciate your participation very much !!!!!!!!!!! Thank you for all your hard work on our behalf. I think you are a great help to all of us. Please continue your participation for those of us whole appreciate you.

[rhondalea]

Oh, I think this thread--which started with Sarah's very understandable curiosity--has evolved into a beautiful tribute to an amazing contributor to this forum. The love and respect underlying all these posts is very evident.

If such homage were paid to me, I'd be doing a happy dance.

[Unregistered]

ElaineM, I think your comments are a bit harsh! This is a light hearted thread, lots of us are curious about Lani, I'm sure we are all very grateful and appreciate all her advice but that does not stop us from wondering...

[StephN]

We all have some kind of picture of Lani in our mind's eye, and feel grateful for this person's presence. And maybe enough has been said.

[Laurel]

I am picturing Lani belly laughing over this bit of fun. Lani has a sense of humor! If she did not previously know we all adore her, she surely does now! I learned some very interesting "Lani facts" from Sarah's innocent question such as her being a true kindred Her2 sis with all of us having had her own personal "Her2 encounter." I never even considered Lani might be one of US.