• Venting

    Asked by LiveWithCancer on Friday, January 5, 2018

    Venting

    I was trying to find some of the articles that I have been featured in that I might include on a new blog site I started. So, I did a google search for my name.

    And, I found my name in a book. By an author I never heard of. An MD and a PhD supposedly cowrote the book. A scientific book.

    So, when I read, for the first time ever, what was written about me in the book ... it is false. It is partly true, a lot like fake news. But, it is false because it isn't fully true.

    I sent a screenshot to my oncologist. I had a couple of questions for him. (1) I wanted to know if my doctor has ever heard of the doctors who wrote the book and (2) I wanted to know if I have the BRAF mutation I have NEVER heard I have.

    The book includes quotes from me ... ones that are typical for me and could have been found many places.

    The book uses my name (hello, HIPPA????) and tells half-truths and lies about my condition, my treatment, and my response...

    So, next steps? Nothing? Contact author or publisher

    59 Answers from the Community

    59 answers
    • SandiA's Avatar
      SandiA

      Wow! Not sure what else to say but I would not be happy. I would be curious to see what your oncologist says. Then maybe go from there.

      over 3 years ago
    • Ejourneys' Avatar
      Ejourneys

      Do you have a lawyer?
      This violation of your privacy is egregious, never mind the factual error(s).
      You may also want to track down the institutions employing the authors. Good luck with getting this straightened out.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      Do the quotes put you in a bad light? Did they give a proper citation. How have they come by your medical information. Are your medical records online? Could be hacking involved. Can you get a copy of the book. What is the overall purpose of the book? You have participated in a clinical trial for many years. I agree that you should be personally offended. But all of us should be offended because twisting the facts hurts all of us. It is doubly offensive when it involves life-saving research. I am OUTRAGED. Be sure to include this in your blog.
      Congratulations on your blog and a prayer for its success.

      over 3 years ago
    • barryboomer's Avatar
      barryboomer

      It's happening all over and it is terrible. You can't believe everything you read. If it was me I'd just let it go and move on as we have enough to worry about.....

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, the quotes are mine and definitely don't put me in a bad light. The diagnosis, the treatment, and the outcome are the fake news. The author, a Yale-educated MD (with business from Wharton Business School), used the made-up diagnosis and results to back up her claims for what she is espousing.

      I can buy the electronic version of the book for $20 or something like that. But, I was able to screen print the page itself that talks about me. I was dumbfounded at the "fake news" which is exactly what it is. Just unbelievable. I feel like I have a pretty remarkable story without making up big lies. Big ones.

      @BoiseB, thanks for the congrats on the blog. Interestingly, I have had a blog on Blogger since 2013. I decided to buy a domain and learn WordPress and move the blog to my hosted domain. I did that last week. Since that time, I have been offered a part-time job based on my blog content and have been able to help a person who has a rare head and neck cancer who is having trouble looking forward with hope instead of dread. I questioned myself on spending the $60 or so that it cost to set up the new blog and have been rewarded many times over already. Go figure!! God is good!

      @Ejourneys, not that kind of a lawyer. We have a family lawyer who has helped with my son's divorce / child custody issues. She's an agility friend.

      The authors seem to be self-employed. And, have been nominated and/or awarded all sorts of honors ... that is, if you can believe their bios. That's the thing ... can you? I question every word in the book now. One totally erroneous statement in their book makes me question EVERY WORD in it.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I wish I could copy and paste from the book, but I can't. But, here is what was true:
      1. My name
      2. My date of diagnosis
      3. My quote

      What was false:
      1. My diagnosis (lung cancer with rare BRAF mutation ... no mutation here)
      2. The clinical trial: nivolumab + chemotherapy (no chemo for this girl ... they weren't even trying that for lung cancer when I first got into my trial)
      3. The result: tumors spread all over my body shrank (I had tumors in both lungs and in my supraclavicle node ... but not all over my body. Furthermore, the tumors stabilized and remained stable for 4.5 years. They did not, unfortunately, shrink.)

      I seemed to have gotten access to more of the book than I realized from my search. The Foreword says that the authors asked the guy who wrote the foreword to go with them to a meeting at the Vatican where they all apparently rubbed shoulders with the Pope. Scary that they are big liars. They seem to have some clout.

      over 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      You have been watching too much news and now you're taking tips from them. Deny, deny deny, that's not me dude. If it wasn't so serious it would almost be funny. Track them down and nail them!

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I don't totally understand your comment, @GregP_WN, but I find it scary as heck. This doctor has written a lot of books, as it turns out and apparently has a lot of clout. And, unfortunately, she doesn't tell the truth. She makes it up to support her premise. Terrifying.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      LiveWithCancer, what is the title of that book and the authors. Sounds like pure snake oil to me. So sad that your name is associated with it.

      over 3 years ago
    • Molly72's Avatar
      Molly72

      Wow, that is really not only nervy but illegal.
      I would contact publisher, and threaten them with legal action. If you do not hear from them in a reasonable length of time, call an attorney.
      Actually, just a letter from your attorney should be your first action, a copy to the author as well.
      Any reputable publisher should have contacted you for permissions, ,,,,,,go get 'em!

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      LivewithCancer, I don't blame you for being scared. I've never let my full name out on the internet, even Facebook. Before you pay an attorney, call the government agency over HIPAA, which is HHS, and get info about filing a complaint, which should cost nothing through the government. Your info wouldn't be so scary if it didn't include your name, where anybody could look you up and possibly find you. I think they're supposed to use a number or symbol. Tell the HHS you are frightened for your safety, and make that part of your official complaint.

      We all may have unknowingly signed our confidentiality rights away for our medical information in the small print of forms we get, especially in clinical trials, but I doubt that would EVER include name ID. The authors will probably get a scary letter from the government telling them the penalty for violating HIPAA!!

      Let us know what you find out. Maybe they'll have to retract publication of the book because you are frightened for your safety. Hope you get some money out of this!!

      Explore:
      https://www.hhs.gov/hipaa

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      Barbara, Live With Cancer is not the only victim here. Anyone who reads the book is a victim. Who knows how many individuals have been misrepresented. Looks like even the Pope is misrepresented. Wonder how much money they are making off the book?

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, yes!!! I don't really care if my name is out there on the WWW ... it is, in fact, EVERYWHERE out there. I reject it being used without my permission in a book. I probably wouldn't even care if it was used without my permission IF THE CONTENT WAS TRUE. But, all of the information that actually matters is blatantly false. And, YES!!!! People might believe what was written based on the examples given to prove the point...

      I perused the part of the book that I was able to download for free. I came across the name of another friend of mine who has benefited greatly from immunotherapy in the fight against colon cancer. I haven't, but will probably contact him and see if he gave permission for the use of his story or if it too was lifted from someplace else and then modified to suit the author's purposes.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, the name of the book is "Cells are the New Cure." Written by Robin L Smith, MD and Max Gomez, PhD

      If you just do a search on something like the word "cancer" it seems to be giving you the content where that word is found at no cost.

      When I went to get the exact name of book and authors just now, I see that it has a 4.7/5 rating on Goodreads...

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      BoiseB, you're right, but I only know about her HIPAA part. Maybe someone else can tell us about what happens to people making false medical claims and misleading patients and doctors. I guess that's another reason they say not to take seriously a result from one or a few studies, that results should be confirmed by many studies.

      To put her name in it is especially dumb, so I'm wondering how much experience they have. Amateurish. She would never have found it if they hadn't used her name, rather than a number.

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      LWC, I explored the HIPAA website and found HIPAA rules about research, if that's what it was. It says something about paying a money penalty.

      https://www.hhs.gov/hipaa/for-professionals/special-topics/research/index.html

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      I almost forgot that it says they make the guilty parties correct their misstatement.

      I wouldn't contact the publisher and authors and tip them off until speaking to the HIPAA people and asking if you should.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Thank you, @BarbarainBham!!!! A little money would surely be nice around here!!! :) And, more importantly, correcting the misstatement. Without using my BRAF (nonexistent) mutation, the rest of my story, for her purposes, is meaningless. I wrote to my doctor to make absolutely sure that I didn't have that mutation and just didn't know it. I was actually a little excited to think that i did - it would give new treatment routes ... but, no. The nurse looked through my records and saw nothing that said I had a BRAF mutation. I feel sure after 4.5 years of being pretty involved in my treatment, I would have known, but still....

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      I went to Amazon and looked up the book and authors, and Robin on Good Morning, America, was one of the people commenting. You could get famous if you exposed her as a fraud.

      You should ask if any money would go to you or to HHS, in case you want to get an attorney to sue also.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I sure would be taking on someone with clout ... and money, of which I have none. But, I HATE that she published false information about me! It just infuriates me. And, I have to believe that if she changed my story at her pleasure, she has done the same to others. (Naturally, I cannot prove that.)

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Maybe I will write to Robin and tell her that she interviewed a fraud...

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      LWC I came across link to your doctor.
      http://celltherapyconference2016.com/2013/03/28/robin-l-smith-m-d-m-b-a/
      interesting that she is on an advisory committee to the Vatican. That is an ethics sort of thing,
      Of your mix-up could have been an editorial error. She needs to be more careful. If all her research is this sloppy I would not trust her.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I just know it is false. And, without the false information, it would not support her premise. She should have kept internet searching for someone who fit what she needed. But, I suspect that person would be VERY, VERY (dang near impossible) to find. So, let's just fabricate a little bit here so that it works... UGh. Ugh. Ugh.

      The more we look about her, the more we find. Licensed Psychologist. Ordained minister. On staff therapist for Oprah. She's "somebody." A liar. But Somebody.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I am getting ready to write to my friend with colon cancer and see if she interviewed him or just lifted stuff off of the Internet.

      Again, I would be pretty much okay with it if only she had told the truth. But, falsifying my diagnosis AND the result of treatment ... that's just not okay.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      Oops LiveWithCancer You got the wrong Dr. Robin Smith (although they are ethical twins) . The one who quoted you is actually working for a company. She does make appearances on TV shows though and makes a lot of money off her books. Never trust someone who puts a MBA after their MD. They didn't get the MD for the right reasons.

      over 3 years ago
    • Ejourneys' Avatar
      Ejourneys

      Here's one way to report an error in a book:
      https://www.quora.com/I-found-an-error-in-Google-Books-the-year-of-publication-How-can-I-correct-it
      Here's another route:
      https://academia.stackexchange.com/questions/18441/i-have-found-an-error-in-a-textbook-what-can-i-do-about-it

      Robin Smith is Executive Chairman of Caladrius. Their address is here:
      https://www.caladrius.com/contact-us/
      Smith's own page has only an online form to fill out on her Contact page:
      https://www.robinlsmith.com/contact/

      Contact info for Max Gomez:
      http://www.drmaxgomez.com/contact
      He's a medical correspondent w/CBS News. Here's their contact page:
      http://newyork.cbslocal.com/about-us/contact-us/

      Here's the contact page for the publisher:
      https://www.benbellabooks.com/contact/

      Disclaimer: I am a compete layperson in these issues. However, even if your lawyer is "not that kind of lawyer," (s)he may be able to refer you to one. If you write a snail mail letter yourself to either of the authors or to the publisher, I recommend listing your lawyer as a cc: at the end -- as in
      cc: My Lawyer, Esq.
      And send the letter(s) via certified mail, return receipt requested.
      Though it's probably better if the letter comes from your lawyer.

      over 3 years ago
    • cards7up's Avatar
      cards7up

      Definitely get a lawyer. If you didn't sign away your privacy rights on a site somewhere, they had no right to use your name or anything else. HIPAA is very strict when it comes to using your medical info. I'd be livid too!!! I'd feel totally violated!

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      Of course a lawyer could advise you on your HIPPA rights but I think there is something larger here. I see it as not a legal matter but an ethical matter.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, it is the ethical part that totally sends me over the edge. What if someone believes the lies and banks on them. Probably would not happen since something like only 3% of NSCLC patients have the BRAF mutation.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      LWC might not just be NSCLC patients that she is being "inaccurate" about. There are other cancer patients she inaccurately represented. They might bank on the information in this book.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      My friend, who has a whole page written about him, never heard of the woman either. He's going to read the stuff about him and let me know if it is false, too. She wrote like she had spent a good deal of time interviewing him...

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, you're absolutely correct. My friend who got a page worth of writing has colon cancer.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      Wow this is a highly unethical person. She also doesn't know a jot about technical writing every quote should have been cited. Not to cite is plagiarism. Not citing sources can be illegal depending on the amount of information she quoted.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      You should see what she wrote about my friend. I can't believe she found all of that online. It sounds like interviewed him extensively

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      He has a much greater case against her than I, especially if she falsified his info too.

      over 3 years ago
    • meyati's Avatar
      meyati

      I seem to be getting the run around in searching for "How to file a complaint about a HIPAA violation?"

      Anyway---YOU MUST FILE A COMPLAINT 180 days from when you first found out. I'd file--

      https://www.hhs.gov/hipaa/filing-a-complaint/complaint-process/index.html

      This has the links-the forms-and pretty much the information.

      Some staff member may have sold the information for extra money. GO FOR IT- This sleasy practice should be shut down and it can affect your reputation as a writer--

      over 3 years ago
    • geekling's Avatar
      geekling

      Did you not write, Livewith, that you had appeared before Congress to testify about something to do with your cancer or treatment? I ask because my memory isnt what it used to be.

      If so, everything you said, including your name, is a public record.

      If that is true, the only record you would be able to correct would be from those statements. On the other hand, making up stuff about you (presumably to sell books) is outside of permissions granted.

      I could put myself through google but I am simply not quite as interesting as you.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Yes, geekling, I did get to talk to Congress. I got to tell them my story. It is an amazing story, actually. Without having to rewrite history like the good doctor did in her book.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      Well here is what we know. 1) Dr. Smith is CEO of a company that does STEM cell research 2) She is associated with a Foundation associated with the Vatican for which she raises Big Bucks 3) She has written a couple of "pop-culture" books.
      Other things we know. She used a quote from LiveWithCancer. and wrote completely untrue things about her. Did she cite the source? Waiting to hear about LWC's friend. This was sloppy research at best. If all her research is like this, I wonder about the validity of her company.

      over 3 years ago
    • coco1101's Avatar
      coco1101

      LiveWithCancer,
      Go after the good doctor. I agree you should talk to HIPPA first though. If your lawyer would write a letter to the publisher, that would open a can of worms for the author's. However, your info may be public record as everything before Congress is recorded and put into their official records (Library of Congress often now recorded). Finally, don't blow a gasket, it just isn't worth you getting all worked up over because you have bigger fish to fry. I would continue on however and see where it leads you to.

      over 3 years ago
    • coco1101's Avatar
      coco1101

      LiveWithCancer,
      Go after the good doctor. I agree you should talk to HIPPA first though. If your lawyer would write a letter to the publisher, that would open a can of worms for the author's. However, your info may be public record as everything before Congress is recorded and put into their official records (Library of Congress often now recorded). Finally, don't blow a gasket, it just isn't worth you getting all worked up over because you have bigger fish to fry. I would continue on however and see where it leads you to.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Coco1101, I am still waiting on your health update, my friend!

      over 3 years ago
    • coco1101's Avatar
      coco1101

      I'm going to put together some info I've shared so you will be up-to-date. Thank you for your care and concern. I take infusion #3 tomorrow morning. Infusions #1 and #2 have left me very sick to say the least. Doc cancelled #2 infusion bcuz I was too sick... they have worked on it lower dose and I'm taking e-mend along with the steroids. 99 out of 100, they all say, find the treatment AOK, I, of course would be 1 in 100 who doesn't do well, naturally! I'll send more. hug's, coco1101

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I go tomorrow too. 11:30. Maybe I will see you. I hope so!!

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      BoiseB, I never heard back from my friend who is also in the book. Makes me think his info might not be altered. Or, maybe he just hasn't had time to look at it yet.

      I will let you know if he gets back to me.

      There was no citation of "source." There was no source. I just can't imagine making up information like that... Surely Yale taught her better.research strategies...

      over 3 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Ye ghods! I know all insurance companies try to be so incredibly vigilant about HIPAA. Our reps are supposed to get name, date of birth & insurance ID#. If a piece is missing, they can go to things like address or phone # if we have that on file. We can use social security numbers, but we can't ask for them -- if offered, great. And as a quality CS auditor, I rip them apart for not obtaining the appropriate HIPAA info.

      It's one thing if the authors were merely taking stuff from what you said in front of congress -- as Geekling said, that's public record. But to twist you info all over the place is just WRONG! Good luck! Keep us informed!!

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      I don't think there is a HIPAA violation here as the medical information is totally made up. What I do see is plagerism. Even if the information is from a free source like the Congressional record, it must be cited. This includes conferences, interviews, even YouTube videos' To neglect to do so is plagiarism. A student in English 101 would be flunked. A graduate student would be suspended.

      over 3 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      How 'bout fraud?

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Since LTW doesn't have the complete book, could the Congressional hearing been cited at the beginning or end of the book, meaning LTW didn't see that portion?

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      There was nothing from the Congressional hearing in the book.

      The accurate stuff in the book was picked up from an article or something. I could do a search on the quote, I guess. It is one I have made frequently so it might pop up any number of places. (The quote talks about how I didn't expect to personally benefit from the trial. I thought I was being altruistic. No one was more surprised than me that I benefited.)

      NOWHERE will the diagnosis, treatment or outcome be found to be cited because it is blatantly false. It would not have been in a Congressional hearing, an article, a blog, a post ... anywhere ... because it is, quite simp ly, fake news.

      I verified with my medical staff yesterday what I already knew. The kind of trial the good doctor said I was in wasn't even an option back in 2013. And, no one on my medical team is aware that I have BRAF mutation. Just the author doctor knows about that. Psychic!! My medical team and I were unaware of my miraculous cure, too. I have wasted 4 years continuing treatment!

      I do appreciate everyone's feedback! I think I will contact the publisher and go from there.

      Thanks, everyone!

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      To properly cite a direct quote there should be a superscript above the last word in the quote referring to the footnotes at the end of the paper, chapter or book. The bibliography is proper documentation for the overall concept of the book. But direct quote and even ideas not the author's own need to be footnoted. Pop-culture books often get a pass but this book is parading as serious research. (English 101)

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I should clarify that I really wasn't part of a Congressional hearing. What I got to do is help AACR present their annual progress report on cancer research to Congress. That's different from a hearing, i think. It was a completely awesome experience, probably more awesome than a hearing would have been, really :) just wanted to clarify. The whole Congress thing sort of took on a life of its own ..

      And, thank you, @BoiseB, I thought I remembered some of those citation rules :)

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      LWC, If you remember the rules you are a whole lot smarter than this Dr. Almost every word except those for national security is recorded in the Congressional Record. Law Libraries and large public libraries get a condenced version. That being said the lack of proper citation indicates she is a very sloppy researcher . The falsified information indicates she might be on the dishonest side alternate facts maybe

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      That's right, BoiseB. I worked for medical center physician researchers who published articles and books about their research, and large amounts of time were spent on getting all that perfect and legal.

      If a researcher ever was found to have fabricated anything, the university would have fired the researcher. It would have reflected on the reputation of the university medical center, including impacting its ability to be awarded funding for future studies from NIH and others.

      I think the fact that the woman isn't connected to a medical school makes her book more questionable, too, because who is checking behind her for accuracy?

      over 3 years ago
    • Molly72's Avatar
      Molly72

      LWC---I worked for 40 years at a major textbook publishing house as a graphic artist.
      In any reputable book house, facts are researched diligently, double checked & checked again. This is the job of the editors. Any research/facts by the author that is false would be, or should be caught before the book goes to press, way before!
      I am quite surprised at their laxness.
      You need a lawyer to contact the publishing house, they would no doubt give more credence to a legal complaint rather than your personal one.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      I did a little research on BenBella Books. As a librarian it is not a publisher I would purchase from unless that book happened to reach the NYT best seller list. It appears to be a pop-culture publisher. If I wanted a more Layman's, I would stick with a major publisher such as McGraw Hill major publishers are much more careful about fact checking of their publications

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @BoiseB, I almost wondered if the book is self-published. I never had heard of BenBella Books. Seeing the pop culture books they publish, I would be very unlikely to ever purchase one of theirs.

      She is getting quite a lot of attention for the book, especially given the lack luster publishing house. You wouldn't expect an author who publishes with BenBella Books to be interviewed by Robin Roberts or any other nationally known personality.

      My cousin was a corporate attorney. I think she's kept up her license. Maybe she would like to send BenBella a little note... the last thing I want to do is spend $$ I don't have on this book.

      BenBella is located here in Dallas. Wish Dr Robin would come here for a book signing. I would enjoy a face-to-face with the good doctor, I think.

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Don't forget it doesn't cost to contact the government agencies we listed above to ask questions about your rights and what to do.

      https://www.hhs.gov/hipaa/for-professionals/special-topics/research/index.html

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      I believe the connection with Robin Roberts comes through the co-author Max Gomez PhD. He is a health science correspondent loosely connected to NBC

      over 3 years ago

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