In our first support group of 2015, we will discuss best practices in distinguishing quality cancer websites from the rest out there. For more information on this topic or about mesothelioma, please visit us at www.asbestos.com

1. Finding Reliable Online Information
About Mesothelioma
Dana Nolan, MS LMHC
Licensed Mental Health Counselor

2. Sourcing Information the
Old-Fashioned Way
Prior to the Web, patients and
caregivers relied on finding information
about mesothelioma from:
Their oncologist and/or treatment
center
Library (medical journals and
reference books)
Bookstore
Calling organizations, such as the
American Cancer Society
(800) 615-2270

3. Benefits of Using Online
Mesothelioma Resources
 Accessible 24/7 from your home
 Multilingual information available if
English is not your first language
 Connect with other mesothelioma patients
and learn about their experiences
 Search for clinical trials and the latest
information about your disease and
treatment
(800) 615-2270

4. Online Sources Are Not Always Right
 Anyone with a computer can set
up a website. People and
companies can create official-
looking websites in order to
promote a health care product or
the opinions of the site’s creator.
 Anyone can publish information
on a blog, wiki, medical or social
networking sites.
 There is no regulation of
information published online.
(800) 615-2270

5. Proceed with Caution
 Despite unreliable or invalid online content
about your cancer, the Web remains a great
starting point for updated information about
mesothelioma.
 Remember: Be smart about where you
search, who’s telling you what and check
their sources.
(800) 615-2270

6. Tips for Evaluating a Website
 Check the domain extension of a website’s
URL (address) for a general indication of
the type of organization sponsoring the site:
• .edu: University or learning institution
• .gov: Government agency
• .com: Commercial company
• .org: Nonprofit organization
Keep in mind that many commercial
companies provide valuable and truthful
information based on information from
these types of organizations.
(800) 615-2270

7. Tips (cont.)
 Read the “About Us” or “Who We Are” section of a
website to learn about the credentials and intentions
of its creators.
The absence of credentials or a
mission statement on a website
offering medical or health advice
or selling health-related
products should be a red flag.
(800) 615-2270

8. Online Cancer Fraud
 When facing a mesothelioma diagnosis, it may
be tempting to jump at anything that appears
like a chance of a cure.
 Some companies falsely market bogus tonics,
pills and creams as beneficial natural
treatments and dietary supplements.
 The FDA must approve all pharmaceuticals
and medical devices intended to treat cancer
before they are marketed.
 Some companies have used the Web to
illegally bypass this process.
(800) 615-2270

9. Signs of Online Cancer Fraud
(800) 615-2270
 The FDA published the following phrases originally
found on some fraudulent websites:
 “Treats all forms of cancer”
 “Skin cancers disappear”
 “Shrinks malignant tumors”
 “Non-toxic”
 “Doesn’t make you sick”
 “Avoid painful surgery, chemotherapy and radiation
therapy”
 “Limited for a short period of time”
SOURCE: U.S. Food and Drug Administration (2008)
www.fda.gov/consumer/updates/cancerfraud061708.html

10. Evaluating Online Resources
 Chat rooms and bulletin boards can
be valuable to share your story and
read others’ mesothelioma stories,
but remember what you read may be
based on one person’s experience
and not objective facts or medical
research.
 Check the date that website was
revised. You want to look for sites
offering regularly updated content.
(800) 615-2270

11. Evaluating Online Resources (cont.)
 Does the online content contradict information
from your physician?
 Share online information with your doctor. Even if
you find good, reliable information on the Web, your
physician will be able to determine if that
information applies to you.
(800) 615-2270

12. Conclusions
 Mesothelioma patients and their loved ones often
use the Web as a resource to learn about their
disease and treatment options.
 Sadly, there is plenty of unreliable or misleading
online information.
 Using the tips we discussed in this presentation, you
are better prepared to find credible online
information about mesothelioma.
(800) 615-2270

13. Questions and Answers from
Support Group
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14. Question 1
How Does Chemotherapy Affect the
Nerves?
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15. Answer
• Certain chemo drugs affect nerves differently than
other drugs. Although chemo is often spread
throughout the body, symptoms typically start from
bottom to top. In most cases, people will notice
chemo-induced peripheral neuropathy (CIPN)
symptoms in the feet, then later in the hands.
• Some chemo drugs can cause nerve damage resulting
in tingling, burning, weakness or numbness in hands,
feet or both; headaches, loss of balance, difficulty
hearing, vision problems, shaking, trembling or sore,
achy muscles.
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16. Is an Itchy Sensation or Weakness in the Legs
Common with this Diagnosis?
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Question 2

17. • As every person is unique, so is each diagnosis. This
means cancer may affect you differently than someone
else, and you may experience different symptoms or
side effects.
• An itchy sensation is not one of the most common side
effects, but some people do experience it. Weakness
in the legs, specifically, also is not one of the most
common side effects; however, many different factors,
including chemo, can cause this or sometimes even
back pain can lead to leg pain or weakness.
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Answer

18. What Is the Cause of My Chest Pain?
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Question 3

19. • Chest pain is typically caused by shortness of breath
— a common symptom of this type of cancer.
• It also can be caused by fluid buildup in the lungs,
enlarged lymph nodes or metastasis on the ribs,
chest wall and pleura (lining around the lungs).
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Answer

20. Is There a Risk Associated with Draining Fluid Buildup
at Home?
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Question 4

21. • Although having the ability to remove fluid buildup
to manage pain at home is convenient, there are
risks involved with using a draining system on your
own. This includes a risk for infection, hypotension
and circulatory collapse.
• Also, a doctor may decide it is not the right decision
for you, because of other factors. Sometimes fluid
buildup does not always occur in the same spot. If
this is the case, having a drainage tube in one spot
may not be beneficial.
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Answer

22. What Is a Pain Patch?
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Question 5

23. • A pain patch is typically a strong prescription pain
medication for moderate to severe chronic pain. It
delivers pain medication slowly and continuously
through the skin and into the body without the ebb and
flow associated with other drugs.
• Each patch can relieve pain for up to three days. Most
consist of potent opioid substances, such as fentanyl,
methadone, hydromorphone, morphine and oxycodone.
It may be inappropriate or dangerous for a patient who
previously has not received opioids for pain
management. Consult your doctor first.
(800) 615-2270
Answer

24. What Does “Stable Cancer” Mean?
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Question 6

25. • Stable cancer does not mean “cancer free,” but it
does mean that blood test results are within an
acceptable range, and the cancer is not shrinking,
growing or spreading.
• It also indicates that no new tumors are forming.
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Answer

26. Is There a Diet to Help Control the Acidity or
Alkalinity of My Body Fluids?
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Question 7

27. • As of right now, there is not enough evidence to
support such a diet.
• Often, one of the best diet plans to follow is that of a
diabetic, because most cancers feed off sugar.
• Stay away from processed foods and others high in
sugar.
(800) 615-2270
Answer

28. Contact Information
1-800-615-2270
(800) 615-2270