How Your Lifestyle Can Affect Genes That Cause Cancer

There are two schools of thinking about cancer.  School one says that cancer is a hereditary disease, passed from generation to generation.  A good example of this are women who possess the BRCA1 and BRCA2 gene mutation.  Women with this mutation have a 70% lifetime risk of developing breast and/or ovarian cancer.  Angelina Jolie, for example, lost her mother and aunt to cancer and was subsequently found to have the same mutation.

The second school says that cancer can occur due to lifestyle choices.  A good example of this is cigarette smoking. It is the number cause of lung cancer, linked to 80 – 90% of lung cancer cases.

Recently, researchers at the Boston University School of Medicine have introduced another theory about the development of cancer.  They proposed that there are processes within our cells that activate certain sequences of DNA.  Those processes act as on/off switches for the development of cancer.

This idea is based on the evolving science of epigenetics. Epigenetics looks at the way genes express or don’t express themselves as we age.  Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment.  In a sense, it’s a hybrid of hereditary disease and lifestyle choices.

Epigenetics is a normal process in our bodies.  For example, all of our DNA is the same, yet cells develop into liver cells, brain cells, muscle cells, etc. because of the way epigenetics turns on and off different cell processes.  But our lifestyle choices can impact the way genes express themselves as well.

Perhaps you’ve heard the expression “Sitting is the new smoking.”  The reason for this is due to research on lifestyle and cancer.  The results of dozens of surveys found that a sedentary lifestyle increases the risks of cancer, specifically colon cancer.  Subjects who spent most of their day sitting were 24% more likely to get colon cancer.  People who watched the most television had a 54% greater risk than those who watched fewer hours.  Uterine cancer was also affected by sitting; women who were the most inactive experienced a 32% great risk.  The female T.V. watchers fared worse; those who watched the most television has a 66% risk of developing uterine cancer.

In all these cases, it’s not the inactivity per se that causes cancer to develop.  It’s the processes of epigenetics that are affected by inactivity that can cause cancer.

It’s a complicated and exciting time.  Next month, more on how unhealthy habits are incorporated into our DNA and passed onto our children.


Sources:

https://blogs.scientificamerican.com/guest-blog/lifestyle-choices-could-affect-gene-sequences-that-code-for-cancer/

http://www.nature.com/scitable/topicpage/epigenetic-influences-and-disease-895

http://www.whatisepigenetics.com/fundamentals/2/

How to Weigh Up the Benefits and Risks of Treatment…and Why It’s Important That You Do

MEO Feb.Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?

new study in JAMA Internal Medicine concludes not. In a systematic review of 48 studies (13 011 clinicians), the researchers found that clinicians rarely had accurate expectations of benefits or harms, more often underestimating harms and overestimated benefits. Among the findings, obstetricians and neurologists underestimated the risk of birth defects from anti-epileptic drugs and GPs overestimated the benefit of prostate cancer screening. Transplant surgeons were biased towards an inaccurately low estimate of graft failure and all types of doctors were unaware of the risk of radiation exposure from imaging.

What do these findings mean for patients? Inaccurate clinician expectations of the benefits and harms of interventions can profoundly influence decision making and the standard of care patients receive. Patient activist, blogger, and author of the upcoming book “Heart Sisters: A Survivor’s Take on Women and Heart Disease” (Johns Hopkins University Press, November 2017), Carolyn Thomas, believes this to be “a consistently systemic issue for patients, too: most believe medical interventions will help more/harm less than they actually do”. It’s a wake-up call for patients who have a critical role to play in understanding and weighing up benefits and risks for ourselves, in order to get better treatment. And it’s a further reminder of the importance of shared decision making to reach a healthcare choice together, as opposed to clinicians making decisions on behalf of patients.

However, understanding the risks associated with a treatment is not necessarily straight-forward. The challenge for busy clinicians is that there isn’t always the time to read and digest the latest research to inform their practice. Medical commentator, physician, and cancer survivor, Elaine Schattner, believes that because medical knowledge changes so rapidly it’s hard for clinicians to keep pace. “This may be especially true in oncology,” she points out, “as patients become expert in their own conditions and needs, they may prefer to look up information on their own, and share their findings with their physicians.”

A lengthy article published this month in ProPublica, examines what it calls “an epidemic of unnecessary and unhelpful treatment” requested by patients and delivered by doctors, even after current research contradicts its practice. “It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous”, writes David Epstein. “Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades.” Epstein points to a 2013 study which examined all 363 articles published in The New England Journal of Medicine over a decade — 2001 through 2010 — that tested a current clinical practice. Their results, published in the Mayo Clinic Proceedings, found 146 studies that proved or strongly suggested that a current standard practice either had no benefit at all or was inferior to the practice it replaced. Of course, this is not to say that myriad treatments don’t indeed improve and save lives, but it’s important to ask questions and do your own research before making a decision on which treatment is the best for you.

Start by asking your doctor to explain all the treatment options open to you, including what would happen if you do nothing. Recognise that all treatments are inevitably associated with some risk of possible harm. Ask your doctor to quantify that risk beyond a purely descriptive term, such as “low risk” (what your doctor considers a small and acceptable risk may be unacceptable to you). Next, do your own research. In order to make an informed decision, you will need to gather reliable information on which to base your choice. Fully exploring the risks and benefits of treatment involves doing your own evidence-based research (using evidence from medical studies that have looked at what happens to many thousands of people with your condition). In a previous article, I shared with you some helpful guidelines for assessing medical information. Most media reports about the benefits of treatments present risk results as relative risk reductions rather than absolute risk reductions, so you will need to understand the difference. Absolute risk of a disease is your risk of developing the disease over a time period. We all have absolute risks of developing various diseases such as heart disease, cancer, stroke, etc. Relative risk is used to compare the risk in two different groups of people. For example, research has shown that smokers have a higher risk of developing heart disease compared to non-smokers. Ask your doctor to differentiate between absolute and relative risk. Check out the NNT website which provides non-biased summaries of evidence-based medicine. “NNT” stands for a statistical concept called the “Number-Needed-to-Treat” – as in “How many patients need to be treated with a drug or procedure for one patient to get the hoped-for benefit?” The core value of the NNT is its straightforward communication of the science that can help us understand the likelihood that a patient will be helped, harmed, or unaffected by a treatment. It provides a measurement of the impact of a medicine or therapy by estimating the number of patients that need to be treated in order to have an impact on one person. Because we know that not everyone is helped by a medicine or intervention — some benefit, some are harmed, and some are unaffected, the NNT tells us how many of each.

You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something has/hasn’t worked for someone else, it doesn’t mean it will/won’t work for you. Orthopedic surgeon, Dr Nicholas DiNubile, recommends patients ask their doctors, “If this were you, or one of your immediate family members, what would you do and/or recommend?” While this may be useful, you must ultimately decide what benefits and risks are important to you. Can you tolerate the side-effects? Are you happy with the way the treatment is administered? Would you find it stressful to live with the risk of any serious side effects, even if the risk is small? What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. The treatment recommended for you may not be the best treatment for your particular lifestyle. Being an advocate for your own health care involves asking lots of questions, doing your own research, and making your preferences known to your doctor. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you.


Related Reading
Clinicians’ Expectations of Treatments, Screening, and Test Benefit and Harm
The three questions that every patient should ask their doctor
Strategies to help patients understand risks

ePatient Virtual Courses

The ePatient virtual classrooms are designed to empower patients in all their healthcare matters.

ePatient 101

ePatient101: How to be an Empowered Patient, is an online course for anyone interested in becoming an empowered patient, empowered caregiver, or patient advocate. Through this online course taught by Alex Barfuss, you will learn:

  • The meaning of the term “ePatient”
  • Why being an ePatient is so important in today’s healthcare system
  • How you can save time and money and get better overall value from your health care providers
  • How to advocate for yourself
  • Tools, tips and best practices to help manage your or your loved one’s chronic disease

Caregiver 101

Caregiver 101 is full of useful tools for caregivers and taught by Caregiving.com founder, Denise Brown. By taking this course, you will learn:

  • How the carer/caree relationship can be a health relationship
  • How to find balance
  • How to find more time for your self
  • How to ask for support
  • Tips, tools, and tactics to be a better carer/caree
  • Curated links and resources
  • Videos
  • Knowledge quizzes
  • Support from a community of caregivers at cargiving.com

Chronic Lymphocytic Leukemia (CLL) 101

We are excited to be partnering up with Intake.me to bring you CLL 101. We wanted anyone struggling with a recent CLL diagnosis to become empowered through knowledge and support. By taking this course, you will receive:

  • An overview of CLL
  • Facts about CLL
  • Curated links and resources
  • Videos
  • Knowledge quizzes
  • Printable checklists with questions to ask your doctor
  • Why you should immediately get a second, expert opinion
  • Tips on building your healthcare team, and how your local doctor can work with a CLL expert to provide the best treatment
  • Where to find the latest CLL research, clinical trials, and other treatment options
  • Ability to ask questions from other CLL 101 students

These courses are part of the Intake.me experience and are free to everyone. You can sign up be clicking one of the buttons below. Enjoy!

Clinical Studies and Research Opportunities For Patients

Essential Thrombocythemia (ET)

Background 

QuintilesIMS Global Services, a worldwide consulting firm, is conducting a research study to better understand the experience of ET patients. QuintilesIMS plans to interview patients who have been diagnosed with ET one‐on‐one over the phone. QuintilesIMS is looking for interested people to share what they have gone through since being diagnosed with ET.

Purpose

The overall purpose of the study is to learn which symptoms of ET are the most common, and how these symptoms typically affect the lives of patients like you who live with the disease. This understanding may help improve how the patient’s experience is accounted for in clinical trials that measure the effect of disease treatments. It also may help patients and their families by highlighting the consequences of the disease that most need greater attention, possibly leading to the development of new programs and support services.

Your Involvement

If you qualify, you will be invited to participate in a 75‐minute telephone discussion with one of QuintilesIMS’ healthcare researchers. You will not need to do anything to prepare, other than being ready to describe what your life has been like while living with ET. At no point before, during, or after the interview will you be contacted to purchase anything or be asked to take any medication. You will be one of 20 patients participating in the study and your information will be kept confidential by removing any personal identifiers.

To qualify, patients must have the following criteria:

1. Patient is ≥18 years of age

2. Patient has a current diagnosis of Essential Thrombocythemia (ET) and fulfills one of the following:

· Patient has received hydroxyurea treatment in the past and discontinued it for any reason

OR

· Patient could not receive hydroxyurea because it was contraindicated for the patient

3. Patient has some self‐reported disease related symptom burden

4. Patient is physically and mentally able to participate in an 75 minute interview in English to discuss signs, symptoms, and impacts related to ET

5. Patient is not currently participating in a research study where an investigational agent is being administered

6. Patient has no prior treatment with any oral JAK inhibitor

Compensation

In return for your voluntary participation in the interview, your time and effort will be compensated with a $125 Visa gift card.

Next Steps

To participate, please call Michael Posey from QuintilesIMS, at +1 412‐973‐3162 (Monday‐Friday, 9:00am ‐ 5:00pm EDT), or write to michael.posey@QuintilesIMS.com. Michael will ask for your consent to participate in the study, see if you qualify, then schedule your interview.

Essential Thrombocythemia (ET)

A Double-Blind, Double-Dummy Phase 2 Randomized Study to Evaluate the Efficacy and Safety of Ruxolitinib Versus Anagrelide in Subjects With Essential Thrombocythemia Who Are Resistant to or Intolerant of Hydroxyurea (RESET-272)

The purpose of this study is to evaluate the efficacy and safety of ruxolitinib versus anagrelide in subjects with essential thrombocythemia who are resistant to or intolerant of hydroxyurea.

Talk to your doctor if you are interested in participating in this study.

To find a study center near you, call , then select option 1.

You can also visit clinicaltrials.gov and enter NCT03123588 to learn more.

Multiple Myeloma

Help Us Better Understand Multiple Myeloma Treatment Experiences

Pinpoint Patient Recruiting is seeking individuals with Multiple Myeloma to participate in a market research study about patients’ experiences with treatment decisions for Multiple Myeloma. The feedback will be used to help future patients and their caregivers.

If you are currently being treated for Multiple Myeloma and are receiving your second, third or fourth course of drug therapy (because previous courses of therapy either did not work, stopped working or you experienced a relapse), you may qualify to participate.

If you qualify and complete the online survey, you will receive an honorarium of $75 for your time and participation. All information and responses will remain confidential.

To see if you qualify or to get more information visit: https://www.pinpointpatientrecruiting.com/multiple-myeloma-research-pen

You may also contact Kim Slusher via email at kim@pinpointpatientrecruiting.com.


Myelofibrosis

A Phase 2 Study of the Safety, Tolerability, and Efficacy of INCB050465 in Combination With Ruxolitinib in Subjects With Myelofibrosis

The purpose of this study is to evaluate the safety, tolerability, and efficacy of the combination of INCB050465 and ruxolitinib in subjects with myelofibrosis

Talk to your doctor if you are interested in participating in this study.

To find a study center near you, call , then select option 1.

You can also visit clinicaltrials.gov and enter NCT02718300 to learn more.

Early Detection of Skin Cancer Matters…

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

TD logo

I am a 32 year old woman- oh wait- 33 now! 32 is when my life changed forever. I noticed a mole on my chest about 2 plus years ago (and keep this in mind- I consider myself a hypochondriac) and I did nothing…. It was flat…then it wasn’t and I did nothing. I would mess with it because it was odd to me and I thought it started bleeding because I messed with it and I did nothing until a few months later. I went to dermatologist and they excised it. On sept 11th 2012, I received a call from my dermatologist ( luckily I was already home and my boyfriend was about to leave for work) and he said something like ” I’m sorry to tell you but you have an aggressive form of skin cancer called malignant melanoma and you need to call Johns Hopkins immediately to schedule surgery”.

TD Feb 2I was in shock and in tears. The next month of my life was the worst I have ever had. Within two weeks I had all consultations, Pre- op requirements and surgery done and it was time to wait for results. For those of you not familiar with melanoma- they removed the area of mole at dermatology office but then you have to get a wide excision so cancer will not come back in the area and then a sentinel node biopsy which through tests determine where the cancer is most likely to spread if it has already spread to lymph nodes. I was considered stage 1b at this point and I guess if it spreads to lymph nodes then you jump to stage 3. Also, melanoma does not have great survival rates – apparently it does not have an effective treatment like other cancers do so what I thought was just ” skin cancer” can kill me and does kill young people quite often. Needless to say I was scared shitless- facing mortality before even getting married. In fact, I feel like I was just starting my life.

I started dating the love of my life only 2 1/2 years before and we were having the time of our lives. The universe was on my side…. But this changed
everything! The wait was the worst- please don’t spread….. And it didn’t! Now while everyone celebrates I’m cancer free- I know that the beast is a bastard and it can come back in lymph nodes and organs or on the skin again and the fight starts again. I’m waiting for the other shoe to drop and looking for resources and outlets all the time for my anxiety or peace of mind. I’m pissed people think it’s just skin cancer but why would they… I did. Educate! Awareness is where the cure for melanoma is right now. Especially in this jersey shore era

A few months later….

I hate you sun

So this is supposed to be a Pre- valentine romantic weekend in a lovely mountain town cabin we frequent…. So why am I crying while the boyfriend is showering?? Because these melanoma stories are heartbreaking. Young men and women dying while their parents and husbands/ wives are caregivers until the last moment. It’s terrifying that I will never know if all of it is gone- until it comes back. While we celebrate our love this weekend it’s terrifying that we may never be able to have a baby (I’ve been reading a lot about how pregnancy hormones can accelerate any cancer- thanks jackass cancer!). My liver results came back as fatty liver so my diet needs to resume: / but yay! No random melanoma in liver! Now I wait for results from cervical biopsy which I get on Wednesday and if all is well than I can breathe again for 2-3 weeks before foot doctor and dermatology appointments.

Back to the reason I am posting…. Since I was diagnosed in September 2012- I have spent 2 days outside- only 2 in over 4 months- because I HATE the sun! So now we are in a lovely town with woods and walking to be done… And I didn’t even bring sunscreen! Ummmm….. Did I forget the sun and melanoma are evil? Did I think my SPF moisturizer would cover my whole body for a day outside? I hate that melanoma has ruined my typical behavior. Now we have to hunt down a hat and sunscreen because the sun is a beotch to my skin and I always knew that but a little pink never bothered me before… Any who….Now I’m going to read my boyfriend the melanoma blog that had me in tears so he is reminded like I am daily of this cancer crap. Ps I will have a lovely weekend but needed to yell at the sun a little

Reducing Your Risk of Cancer

The American Institute for Cancer Research (AICR) estimates that approximately one-third of cases of the most common cancers in the U.S. could be prevented, which accounts for about 374,000 cases of cancer per year. Cancer prevention is action taken to lower the chance of getting cancer therefore reducing the burden and deaths from cancer each year. Since February is Cancer Prevention Month, we wanted to highlight some ways to reduce your risk and protect yourself from cancer.

1. Eat a healthy diet & Stay active

Eating a balanced plant-based diet filled with a variety of vegetables, fruits, soy, nuts, whole grains, and beans can help lower your risk for many types of cancer and will help you maintain a healthy weight.

Adults should get et at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each day (or a combination of these), preferably spread throughout the week. While children and teens are recommended to get at least 1 hour of moderate or vigorous intensity activity each day, with at least 2.5 hours of moderate intensity aerobic activity each week.

2. Protect yourself from the sun

Sun exposure at any age can cause skin cancer. Be especially careful in the sun if you burn easily, spend a lot of time outdoors, or have any of the following physical features:

  • Numerous, irregular, or large moles
  • Freckles
  • Fair skin
  • Blond, red, or light brown hair

To block UV rays try covering-up, wearing sunscreen, wearing a hat, using UV-absorbent shades, and limiting you exposure time.

3. Get immunized

The human papillomavirus (HPV) vaccine helps prevent most cervical cancers and several other kinds of cancer, and the hepatitis B vaccine can help lower liver cancer risk.

4. Avoid risky behavior

Another effective cancer prevention tactic is to avoid risky behaviors that can lead to infections that, in turn, might increase the risk of cancer. Some behaviors to avoid:

  • Excessive alcohol consumption
  • Tanning beds
  • Tobacco use
  • Unsafe sex
  • Sharing needles

5. Get regular medical care and screenings

Along with regular check-ups with your physician to maintain an open health dialogue, cancer screenings should also be scheduled. These include the following:

  • Pap smear – Most women ages 21 to 65 should get Pap tests as part of routine health care. Even if you are not currently sexually active, you should still have a Pap test
  • Colonoscopy – Colon cancer screening should begin at age 50 for most people. If a colonoscopy doesn’t find adenomas or cancer and you don’t have risk factors, the next test should be in ten years.
  • Mammogram – Women should should get mammograms every year starting at age 40, for as long as a woman is in good health
  • Checking skin for irregular moles, etc.

Sources:

https://www.cdc.gov/cancer/dcpc/prevention/

http://www.mcancer.org/cancer-prevention

http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/cancer-prevention/art-20044816

https://www.osha.gov/Publications/OSHA3166/osha3166.html

Patients as Partners Conference

We are pleased to announce that we will be attending our parter, The Conference Forum’s, Patients as Partners US Conference this March in Philadelphia, PA. We are looking forward to hearing from leaders in the industry, meeting with colleges, and learning how to incorporate the patient perspective.

The 4th Annual Patients as Partners US is the only conference putting the patient voice on the same level as industry and government in finding solutions to engage and empower patients in the clinical trial process. It is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient involvement across the entire clinical development continuum. Join us and  get 15% off using our discount code PEN15 >> http://theconferenceforum.org/conferences/patients-as-partners/overview/. We hope to see you there!

If you cannot attend, please follow along as we will be live tweeting this exciting event! (@power4patients) Tweet us and let us know what you are interested in hearing or learning about!

Register using our coupon code PEN15 for 15% off!

Patients as Partners Event History

When this question was asked to our Disrupting Clinical Trials (DPharm) audience seven years ago, no one raised their hand. Immediately we saw the need for a conference on service for patients in clinical trials. However, more importantly, we saw the urgent need for the patient perspective in driving a conference on collaborating in clinical research.

What Patient Research Taught Us

Patients taught us empathy not only with their disease, but with their lifestyle and struggles in finding and experiencing a clinical trial. In particular, we learned the need to:

  1. Understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint.
  2. Vastly improve the patient’s entire experience in a clinical trial.

If it were not for patient research, we would not have an event 100% designed for the benefit of the patient.

We look forward to seeing you at the 4th annual Patients as Partners US this March 2-3.

Register using our coupon code PEN15 for 15% off!

Patients in Clinical Trials or Patient Advocates Needing Scholarships,
Contact Us at service@tcfllc.org

Accredited by 

#Patients2017 organized by:

Please do not reply directly to this email. Contact onalee@tcfllc.org with any inquiries.

Event overview: http://theconferenceforum.org/conferences/patients-as-partners/overview/
Event press release: http://www.prweb.com/releases/2017/01/prweb14018129.htm
Event hashtag: #Patients2017
TCF Twitter handle: @ConferenceForum

 

Can A Shot From Your Doc Prevent Cancer?

Vaccines for highly contagious childhood illness — such as diphtheria, measles, and the mumps — are, for many, an everyday part of pediatric health care.  Even though our kids may scream piteously as the needle goes in, many parents feel that it’s a good thing to protect their children from what were once very common illnesses.

Now this same concept is being applied to cancer.Amy Gray

Along with the growing interest in immunotherapy to treat cancer, there is now growing interest in the idea of preventing cancer through using the body’s own mechanisms to fight disease.  There are several vaccines that have gone through clinical trials and been approved by the FDA: Gardasil®, Gardasil 9®, and Cervarix®.  There are also several vaccines that work against Hepatitis B.

Gardasil®, Gardasil 9®, and Cervarix®were formulated to protect against the human papillomavirus (HPV) that can be spread through sexual intercourse.  Studies have shown that long-term exposure to HPV can cause cervical canceranal canceroropharyngeal cancer, and vaginalvulvar, and penile cancers. These vaccines protect against the human papillomavirus (HPV) taking up residence in the body.

Long-term exposure to Hepatitis B virus (HBV)  impairs liver function and can lead to liver cancer. So researchers have designated HBV as the target of multiple vaccines that protect against this infection.  Two vaccines, Engerix-B and Recombivax HB, target only Hepatitis B. Other vaccines such as Twinrix and Pediatrix protect against HBV and other harmful viruses. Clinical trials are underway to develop vaccines to prevent cancers of the bladder, brain, breast, prostate, and kidneys, among others.

Using vaccines to protect and prevent cancers is just beginning.  It is showing great promise as research shows the interrelationship of various viruses and cancer development.

Sources:

https://www.cancer.gov/about-cancer/causes-prevention/vaccines-fact-sheet#q5

http://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines