Helpful tips to be Your Own Best Medical Researcher

Helpful tips to be Your Own Best Medical Researcher

Helpful Tips to be Your Own Best Medical Researcher

AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.

Here are a few tips ensure the medical information you are researching is reliable and accurate

Book Research

Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves

Professional Presentations

Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.

Google Web Searches

Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu.  For example, type: latest NCCN guidelines for prostate active surveillance  site: .gov OR site: .org OR site: .edu

Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.

Articles, Online Posts

Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.

Anecdotal Evidence

Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:

  1. Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
  2. Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
  3. Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
  4. Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports

The phases of medical trial studies cited by published medical papers are:

  1. Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’  means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice.  Then studies move on to humans…
  2. Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
  3. Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
  4. Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
  5. Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms

Some terms regarding statistical data cited in medical journals are explained as follows:

  1. N =  the number of participants: be wary of studies with a very low N.
  2. HR = hazard ratio:  HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
  3. CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
  4. P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..

 

Editor:  Advisory Board Member and The Active Surveillor, Howard Wolinsky reminded us of another presentation AnCan presented a few years back A Layperson’s Guide to Reading Medical Research – watch it!

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

UPCOMING AnCan CLINICAL TRIALS WEBINAR

Clinical Trials 101: Common Myths and Facts Date:

Wednesday July 31, 8.00 pm Eastern

Click here to register https://tinyurl.com/ancanct

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you’d like to see the AnCan Moderators picks of the best at ASCO24, visit https://ancan.org/patient-highlights-from-the-2024-asco-conference/ for links to slides and to the recording.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:
Editors Pick: The passing of Jim Barnes; ADT know-how from Richard Wassersug (bn)
Topics Discussed
Passing of Jim Barnes, age 65 — his mutations (P53 and PTEN) may have made actinium/lutetium treatments ineffective; a delicate spot radiation gets moved earlier; after five years of remission, PSA drifts just high enough to be worrisome; blood clots in lungs after his final Provenge infusion  — “I actually could feel bumps”;  scary bright spot in his PSMA PET appears to be a prostate cyst; OK to start Casodex and Lupron at the same time?; a mini-webinar from Dr. Wassersug on ADT preparedness; Dr. W says metformin does not appear to forestall ADT-induced diabetes; and he updates us on his still-unproven but intriguing estradiol treatments — note, please, that they’re not a way to avoid ADT symptoms!; new team is eyeing PSA before starting radiation; testosterone still trailing after 2-year treatment holiday; at Carbone, we like Dr. Lang — also take advantage of Carbone’s palliative care, and be honest with them.
Chat Log
Richard Fiske · 6:30 PM
Sorry; have to leave.
AnCan – rick · 7:07 PM
PROMISE – https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick · 7:11 PM
https://www.lifeonadt.com
AnCan – rick · 7:38 PM
DR W discussion with AnCan’rs  https://ancan.org/talking-estradiol-e2-for-recurrent-and-advanced-prostate-cancer/
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 15, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 15, 2024

UPCOMING AnCan CLINICAL TRIALS WEBINAR

Clinical Trials 101: Common Myths and Facts Date:

Wednesday July 31, 8.00 pm Eastern

Click here to register https://tinyurl.com/ancanct

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you’d like to see the AnCan Moderators picks of the best at ASCO24, visit https://ancan.org/patient-highlights-from-the-2024-asco-conference/ for links to slides and to the recording.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:

Editor’s Pick: Gleason 10 de novo going strong 9 years later; sons need baseline PSAs starting at age 35 (bn)

Topics Discussed

De novo Gleason 10 got up-front triplet therapy — and his PSA is still low 9 years later; make sure your mutations are right for Pluvicto; Gemtesa helped him manage a full bladder for radiation; cellulitis isn’t uncommon in radiation therapy, bleach baths may help; the many steps of Mark Finn’s journey to hospice — when is it time to throw in the towel?; SBRT has replaced brachytherapy for many radoncs; there’s not just one kind of rectal spacer for radiation — there are three; important to get the right team, focused on genitourinary care, for radiation; “exercise enthusiastically — kills hot flashes — my personal experience”; PSA undetectable — why all these scans?; thumbs down on Walter Reed for prostatectomies; if you have kids, have them get a baseline PSA at age 35; a son’s PSA of 2.7 at age 39 is “definitely not normal” and an MRI is in the works; entrolled in a trial targeting SPOP mutation — side effects aren’t bad, but also no PSA improvement.

Chat Log
AnCan – rick · 8:30 PM
https://ascopubs.org/doi/abs/10.1200/PO.23.00634?bid=370494862&md5=efb3c3159aa147415d4f2ded3334efa3&cid=DM16999&journalCode=po
AnCan – rick · 8:34 PM
Elizabeth Guancial , Sarasota
https://flcancer.com/en/physician/elizabeth-guancial-md/
John A · 8:37 PM
“Anticancer Lifestyle Program”  is good
Dr. Jeff · 8:39 PM
https://www.mskcc.org/pdf/cancer-care/patient-education/nutrition-and-prostate-cancer?mode=large
AnCan Barniskis Room · 8:42 PM
Also check out https://www.prostatecancer.news/?m=1  This review suggests that diet may not be as effective as thought.
AnCan – rick · 8:43 PM
Guardant study on mutations and Pluvicto https://ascopubs.org/doi/pdf/10.1200/JCO.2024.42.4_suppl.82
AnCan – rick · 8:45 PM
UCSF Nutrition for Prostate Cancer  https://www.ucsfhealth.org/education/nutrition-and-prostate-cancer
AnCan – rick · 8:48 PM
Cancer Fighting Kitchen,   Rebecca Katz
AnCan – rick · 8:54 PM
Dial-in:  (646) 749-3129  #222-583-973
Dr. Jeff · 8:58 PM
https://www.gemtesa.com/?utm_source=google&utm_medium=cpc&utm_campaign=Gemtesa_DTC_GGL_BRND_Management_AWA_SEA_EXTM_US_EN+KW+-+SP+BR_ALL&utm_content=Gemtesa&utm_term=gemtesa+price&gclid=EAIaIQobChMIuPS5oa2qhwMV70tHAR3d8QupEAAYASAAEgI42PD_BwE&gclsrc=aw.ds
John A · 9:08 PM
Hi David I see your hand is up.  What’s up?           John
David H · 9:12 PM
I callled in on the number.  Since it is so late let me get on the next call
David H · 9:14 PM
ok
Joel Blanchette, Reston, VA · 9:18 PM
Do you have a palliative care doc?
David H · 9:18 PM
thanks Jim
Jim Marshall, Alexandria, VA – mPC · 9:37 PM
David is David Hobbs.    jim
David H · 10:03 PM
Thanks Joel.  I’ll contact you
Joel Blanchette, Reston, VA · 10:04 PM
Invitae
John A · 10:04 PM
somewhat related: I’ve read that if the PSA <.5 at 50 years old, you will not die of prostate cancer
Dr. Jeff · 10:13 PM
sorry I’ve got to jump.
THOMAS  Matica · 10:15 PM
GONNA BOUNCE, THANKS FOR A GREAT MEETING.  Thomas
Nick Young · 10:17 PM
Sorry I have to run. Meeting has been great guys!  Nick
Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 9, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 9, 2024

 

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you’d like to see the AnCan Moderators picks of the best at ASCO24, visit https://ancan.org/patient-highlights-from-the-2024-asco-conference/ for links to slides and to the recording.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:
Editor’s Note: Adderall conquers his ADT fatigue — what’s the downside? (bn)
Topics Discussed
Adderall is rescuing him from ADT fatigue — but easy does it; a friend insists his darolutamide led to sepsis; shortening IMRT with SBRT — and which goes first?; topping off the bladder for radiation — a clamp (Lundberg or Wiesner) can prevent accidents; spacer gel for rectal protection in radiation — doctor skill seems to matter; his doc is talking about BAT, but chemo seems a better first option; acute fevers have come and gone since April 2021 — finally, antibiotics and a possible explanation; starts ADT and finds he can finally sleep through the night; solifenacin (new to us) to reduce nighttime bathroom trips; his PSA isn’t responding to ADT — a consult with Dr. E might be wise; we prefer other genomic tests to Guardant; if you’re on a lutamide, watch out for supplements that interact with CYP3A4; he’ll keep the holiday in his drug holiday and put off PSA testing till he’s back; be aware of costs in a clinical trial.l
Chat Log
(Once again, GoTo did not capture the entire log — our apologies)
AnCan – rick · 6:45 PM
We’ve been talking BAT here for many years. Here’s a webinar with Sam Denmeade from 2017  https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
AnCan – rick · 6:50 PM
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313844/
AnCan – rick · 7:24 PM
Solifenacin (VESIcare)
John A · 7:35 PM
lab error? repeat?
AnCan – rick · 7:42 PM
Dr. Eleni Efstathiou https://www.houstonmethodist.org/doctor/eleni-efstathiou/?inm=vfad
AnCan – ricksent a chat · 8:04 PM
I realized – OK
Patient Highlights from the 2024 ASCO Conference

Patient Highlights from the 2024 ASCO Conference

Patient Highlights from the 2024 ASCO Conference
Watch RECORDING here https://youtu.be/P6qQcCwPIcQ
Highlights of the top prostate cancer papers from the recent ASCO annual conference were presented by AnCan moderators in a special 75-minute session preceding the 7/1/2024 High Risk / Recurrent / Advanced prostate cancer meeting. Moderators Rick Davis, John Antonucci, Len Sierra, and Ben Nathanson spoke, followed by a 30-minute audience Q&A.
Topics we covered:
* Sequence your tumor before Pluvicto
* More tough news if you’ve got the bad mutations…
* With a BRCA mutatoin, get that PARP-I quickly!
* Readily available solution to hot flashes if you’re on abi
* State-of-the-art personalized medicine and imaging
* Cushioning the blows of ADT
* A flop for metformin
* Who should get treatment holidays?
* Is alpha radiation the top dog?
* Pressing AR’s self-destruct
* An angle on neuroendocrine
* Predicting winners at immunotherapy
* Who’ll connect at BAT?
* Doublet faceoff: ADT+ chemo vs ADT+ARPI
* In triplet trials, who really needed chemo?
* Ranking PARP inhibitors for bone-marrow complications
* When PSA and PSMA go different ways
* Who’s expressing PSMA?
* Could CD46 be a better PSMA?
* Niche for precision medicine: fused genes
* AI keeps advancing
* An OS oracle from UCSF
* An OS oracle from ArteraAI
* Taking on oligomets
* Decipher without the sequencing