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Old Wed Jul 26, 2017, 04:15 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,497
What does your doctor think of your Internet use?

Does your doctor welcome questions or ideas that you bring up based on your use of the Internet, or would he or she seem to prefer that you not show up at appointments armed with information that you researched yourself?

I'm curious whether it's helpful for you to talk to your physician about information that you find at AAMDS.org, The MDS Foundation, Marrowforums, the PNH Support Group, PubMed, ClinicalTrials.gov, The MDS Beacon, RxList, The American Cancer Society, The Leukemia & Lymphoma Society, and a zillion other sites that you might frequent or might come across. (I don't mean these specific sites; I mean ALL websites that you visit.)

It's easy to find medical articles, patients stories, and sometimes dubious medical claims when you go googling around the Internet. Does finding information online keep you informed and help you work with your doctor, or is it ever a distraction that gets in the way of your teamwork?

Last edited by Neil Cuadra : Sun Nov 18, 2018 at 12:54 AM.
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Old Wed Jul 26, 2017, 06:31 PM
Data Data is offline
Join Date: Sep 2014
Location: Florida
Posts: 245
Information is power

Neil, personally I would never go to doctor's appointment with out doing my own research. I use all of the sites you mentioned. I try to stick to .gov, .edu, .mil, .org, and similar sites. I am wary of .com sites but there is some good information on them - you just have to be a little suspicious of their motivations. I also try to find information from multiple sites that have the same opinion or theory. The doctors that I go to for my primary care, MDS, and prostate cancer all welcome information from reliable sources.

Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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Old Wed Jul 26, 2017, 09:38 PM
triumphe64 triumphe64 is offline
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 441
You mentioned PubMed.
The actually copies from medical journals should be helpful.
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Thu Jul 27, 2017, 08:12 AM
Callie Callie is offline
Join Date: Jan 2014
Location: Fayetteville, NC
Posts: 24
Dad (Bailie), as you know, researched everything and wanted to go into all of his appointments as prepared as possible, with relevant questions. His doctors said he was the most informed patient they'd ever had - and they welcomed it, actually (I was at many of his appointments and talked to the doctors, too, so not just taking his word for it )!

I honestly don't know if they'd have been as aggressive in his treatment (again, positive) had he not brought up the various studies he found, treatment possibilities, questions, etc. His doctors (and entire care team throughout the illness) were amazing to work with, welcomed his insight, and while there were, at times, minor disagreements on the findings, they were never, ever negative. And from a personal standpoint, I don't know how we (mainly Dad, but I researched almost as much as him, hoping to find something positive for every negative piece of information found) could have done the journey any differently. I know there are many who go by the saying, "ignorance is bliss". That just wasn't us. We were very fortunate for the many websites, this forum, and his doctors having very open minds.
Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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Old Fri Jul 28, 2017, 02:49 AM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 838
I'm a firm believer in "knowledge is power". I've done an enormous amount of personal web research, particularly in the first year or so after being diagnosed and I believe it has been really beneficial. If I read something I don't fully comprehend I ask my haematologist about it and so far this has always been a positive experience. I'm always interested to know more. I like the PubMed articles and the AAMDSF presentations can be helpful too. I've also read some interesting books.

I think it's fairly easy to discern when spurious claims are being made. There's a certain "flavour" to these types of websites.
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Fri Jul 28, 2017, 09:32 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,497
I'm not surprised that many of us do our own research and I'm glad to hear that your doctors welcome well-informed patients.

Quite often, you can find yourself with too much information online, so you have to sift and filter what you find, to get to what's relevant to you. Examples: Old statistics can give you a more pessimistic view of your prognosis than state-of-the-art results, so pay attention to the dates of articles. Medical studies are more relevant when they involve large numbers of patients, so note the difference. Treatment recommendations for adults, and especially for seniors, may not apply to children and adolescents.

My wife's hematologist was glad to discuss any topic that we wanted to bring up, but still had to keep to an appointment schedule, so we learned to focus on the information that mattered most, including something we might have learned online. I've met patients who would print out long web pages to bring to appointments, expecting their doctor to evaluate them on the spot, and I suspect that it was not a good use of their or their doctor's time. If a doctor is wiling to exchange messages by email, that can be helpful when you have something to share or ask.

I agree with Cheryl C that you can spot suspicious websites, for example sites that are selling a product or sound way too good to be true. You just have to know to watch out for them. One trick I use is to look at the "Privacy Policy", "Terms of Use", and "Contact" links at the very bottom of a web page, which can reveal who runs the site. I used to be instantly suspicious of sites created by pharmaceutical companies, which have an incentive to bias the information in favor of their treatment drug, and it's good to be wary, but in fact I find that the major phamas give pretty fair information, so those sites can be useful. See dacogen.com for example.

Researching alternative treatments on your own is a tough challenge, but it's clear that many patients are looking for answers. It's definitely worth reviewing anything you find online with your doctor.
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