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October 12, 2011

New App Helps Women Track Signs of Ovarian Cancer

Dear Anne:

We are excited to announce a new tool that helps women track the symptoms of ovarian cancer. Our new Ovarian Cancer Symptom Diary App is available free of charge from the Ovarian Cancer National Alliance website.

The app asks a woman a few questions about risk factors, like whether her family has a history of breast or ovarian cancer. She can then log in and record symptoms that research shows are common with this disease:
• bloating
• pelvic or abdominal pain
• difficulty eating or feeling full quickly
• urinary symptoms (urgency or frequency)
A woman using the Ovarian Cancer Symptom Diary App can email herself a report summarizing her risk profile and recorded symptoms--a useful tool when visiting her doctor to discuss ovarian cancer.

We hope this app will help women be diagnosed as early as possible, potentially saving their lives, but we need your help to spread the word. As a member of our community, you already know about the signs and symptoms of ovarian cancer.

Help us educate women about ovarian cancer by forwarding this email to a friend, or sharing a link to our four-minute video on the Ovarian Cancer Symptom Diary App. Together, we can raise awareness of this deadly disease and encourage women to record symptoms that might be a sign of ovarian cancer.

This project was funded by Genentech and Nektar. Learn more and download the app.

With warm regards,


KarenOrloff Kaplan
Chief Executive Officer

What is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on improving overall quality of life for patients and families facing serious illness.  Emphasis is placed on intensive communication, pain and symptom management, and coordination of care.

            A team of professionals working together with the primary doctor provides palliative care.  It is appropriate at any point in a serious illness and can be provided at the same time as treatment that is meant to cure.

            “For many patients facing a serious illness, the last thing on their minds is decoding what the phrase “palliative care” actually means, let alone asking for it in the moment of need.

            But palliative care encompasses a kind of whole-person care their doctors may not have the time or knowledge to perform, and finding a specialist in the field for at least a consultation can help patients improve their quality of life.

            Unlike traditional hospice care, which is available to patients expecting to live no more than six months and typically requires them to forgo curative treatment, palliative care can be offered in addition to regular care, and can start immediately after a diagnosis.

            It involves managing seriously ill patients’ pain, nausea and other treatment side effects, helping them discuss their illness with family members and supporting them as they decide what treatment, if any, to pursue.

            The benefits appear to be robust.  Adding palliative care early to patients’ standard regimens not only improves their quality of life but lengthens their life as well, according to a study published in the August 19 edition of the New England Journal of Medicine.

            Among 151 patients with newly diagnosed advanced lung cancer in a randomized clinical trial, those who had palliative-care visits at least once a month scored significantly higher on quality-of-life measures, experienced less depression and lived almost three months longer on the average than their counterparts who received only standard cancer care.  They also were more likely to have documented their preferences for resuscitation.

            Patients who got palliative care in addition to their regular cancer treatments like radiation and chemotherapy survived longer even though they received less aggressive end-of-life care than their counterparts who didn’t get palliative care.  They survived an average 11.6 months compared with 8.9 months for participants who received cancer care alone.

            Patients in the palliative-care group had a 50 percent lower depression rate, and that didn’t result from the use of antidepressant drugs, said an oncologist at Massachusetts General Hospital in Boston.  “It’s clearly something about how the palliative-care clinicians were communicating with them and managing them that improved their mood,” she said.

            The study may help physicians better understand what the medical specialty of palliative care can offer to patients who are struggling with intense physical and emotional suffering.  Not only can it help people feel better, it can help them live longer.

            Typically, patients who receive palliative care do so while they’re in the hospital and after their disease has progressed.  But the researchers in this study didn’t follow that model.  Not only did doctors and nurse practitioners see patients early in the disease and close to the diagnosis, but they also saw them in the outpatient setting.

            A nurse practitioner that oversees nurses in the palliative-care program at Mt. Sinai School of Medicine in New York said patients need early involvement.  Waiting until a patient’s last days or weeks when they already feel awful and debilitated misses out on a lot of the benefit, and it also doesn’t allow for the relationship and trust to be built over time that everyone wants to have with their health-care providers.”

            It is important to know the benefits of palliative care before there is a need for it.  Ask your doctor if it is available if you should have a need for it.  If it isn’t available and enough patients ask for it, maybe a program can be started!

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December 1, 2009

COMPOUND IS BEING TESTED THAT MAY LEAD TO PREVENTIVE DRUG OU research could give hope in cancer fight BY SUSAN SIMPSON Staff Writer ssimpson@opubco.com



     Researchers at the University of Oklahoma Health Sciences Center say a compound they are testing one day may be used to kill cancer cells without the damaging effects of chemotherapy.

     The synthetic compound SHetA2, when tested in animals, caused cancer cells to destroy themselves but had no side effects, researcher Doris Mangiaracina Benbrook said.

     Chemotherapy often makes patients very ill and can lead to hair loss and fatigue. The compound also prevented cancer from recurring in animals.

     Benbrook announced last year that she believes SHetA2 could be taken as a daily supplement that would prevent all cancers from occurring in humans.

     Benbrook said she hopes to start clinical trials in humans next year but said it could be five or more years before a cancer treatment or preventive drug is marketable.

     “All studies to date have not found any side effects of taking our drug, giving hope that we can prevent cancer in healthy people and improve treatment for cancer patients without increasing toxicity,” Benbrook said.

     She said the compound worked well when tested on rats and dogs, but it might not work exactly the same in humans.

     “It’s very easy to cure cancer in animals, but it’s not until the clinical trials that you come across stumbling blocks,” Benbrook said.

     Donna Bacon, a survivor of ovarian cancer, said she welcomes such treatment. She worries that her daughter now has a genetic risk of ovarian cancer.

     “My biggest concern now is I have a 36-year-old daughter,” Bacon said. “What’s she supposed to do?”

     Benbrook said the National Cancer Institute has invested millions of dollars in seeking a cancer prevention drug.

“It’s very easy to cure cancer in animals, but it’s not until the clinical trials that you come across stumbling blocks.”

Doris Mangiaracina Benbrook, OU researcher

     Such a drug must be tested to work in humans before drug companies or the Food and Drug Administration will take interest.

     Benbrook’s research appears in the journal Gynecologic Oncology.

     Oklahoma State University chemist Darrell Berlin helped create the compound.

Above: Ovarian cancer survivor Donna Bacon speaks Tuesday at a news conference about a potential new treatment that researcher Doris Mangiaracina Benbrook, left, helped develop. PHOTO BY DAVID MCDANIEL, THE OKLAHOMAN

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MEDICAL MOMENT

Doctor, Can We Talk?”

Tips for Communicating With Your Health Care Team

                Talking to your doctor can be difficult.  No matter what your diagnosis, simply hearing about it may leave you feeling frightened or overwhelmed.  Good communication with your doctor will help improve the quality of the care you receive.

            Remember, you are the consumer.  As a patient, it is important to remember that you are a consumer of health care.  The best way to begin making difficult decisions about health care is to educate yourself.

            Bring someone with you.  It is a good idea to bring someone with you when you have an appointment.  It is always helpful to have support, a second set of ears, and another person to think of questions.

            Write out a list of questions beforehand.  A list will help you remember important questions.  Make them specific and brief because your doctor has limited time.  Ask your most important questions first.

            Write down the answers you get.  Writing down answers will help you remember your doctor’s responses and instructions, and you can go over the information later when you have time to research and concentrate.

            If possible, bring a tape recorder.  It is okay to ask your doctor if you can record your visit.  Taping is helpful because it gives you a chance to hear specific information again or share with family members or friends.

Saying and Hearing:  CancerCare’s Tips for Understanding Your Doctor

            When you are talking to your doctor, use “I” statements.  For example, the phrase “I don’t understand…” is much more effective than “You’re being unclear about…”

            Don’t be afraid to be assertive.  If you don’t know what a word means, ask about it.  Remember to make your questions specific and brief.  If there is something you can’t understand or resolve, ask your doctor if there is some other time that the two of you can discuss it in more detail.

            If something seems confusing to you, try repeating it back to your doctor by saying something like,  “So you mean I should…?”  If you understand better with pictures, ask to see X-rays or slides, or ask your doctor to draw a diagram.

Questions To Ask About Your Cancer Treatment and Follow-Up

Here are some questions that you may want to ask your doctor or nurse to help you understand your treatment and follow-up:

What are my treatment options?  What is the recommended treatment?

• How often will I receive treatment?  What are the side effects?
• What are the benefits?  What are the risks?
• How much will it cost?
• If I have questions during my treatment and my doctor is not available, who can I ask?  Is a nurse, social worker or other specialist available?
• Is there anything else I should know?  Is there any information I can read about this treatment procedure?

CancerCare Can Help

            The professional oncology social workers at CancerCare understand the importance of having good communication with the members of your health care team.  We are available to help you with any concerns you may have in this area.  CancerCare also offers other free services, including counseling, support groups, education, financial help and referrals to other organizations that provide assistance.  To learn more, call us at 1-800-813-4673 or visit www.cancercare.org.

Reprinted with permission of CancerCare, 275 Seventh Avenue, New York, NY_________________________________________________________________________

Chronic Cancer Pain Management

By Patricia Beach, MSN, RN, AOCN, ACHPN

            All pain is not created equal, but chronic cancer pain can be controlled and relieved.  The acute pain of a toothache tells you to go see a dentist.  However, chronic cancer pain is no longer a warning and has little meaning except as a reminder of an illness.  Chronic pain, defined by duration, may persist for weeks, months, or years.  It is

• unique to each individual,
• generated from within the brain, involving many central regions of the brain, and
• influenced by past pain experiences.

            Very often, chronic cancer pain is managed successfully with opioids or narcotics.  Many people are reluctant to take these medications because of a fear of addiction or of starting them too soon in their illness.  However, research is very strong in this area and demonstrates that when used for cancer pain there is very little chance of addiction.  Although dependence will develop, the benefits of controlling your pain far outweigh it.  You will be more active and enjoy a better quality of life with your pain controlled.

            Single preparation opioids have a wide variation in dose and can often be increased as needed without a ceiling dose.  They can be used over a long period of time to manage pain.  These medications are delivered in a variety of ways, including pills, capsules, liquids, skin patches, drug pumps, injections and suppositories.

            Opioids may be used alone or with other non-opioid medications.  The right combination to manage your pain can be found, although it is not always the first one tried.  Your physician should be able to help you obtain pain relief or refer you to a specialist in pain or palliative medicine.

            Below are the keys for the successful management of chronic cancer pain:

• Constant pain should be treated with around-the-clock dosing, that is, medication taken on a regular schedule. Do not wait until you feel the pain or until the pain is severe to take medication.  There are several time-released pain medication preparations available that allow pain to be controlled at an even level over 24 hours.  These medications are usually taken every 8, 12 or 24 hours.  Implantable drug pumps that constantly deliver medication are also available.
• There should be a plan for times when the pain worsens.  This is called “breakingthrough” pain.  Usually your physician will order a quick-acting pain medication that you can take as needed.
• Recognize and treat side effects.  Constipation is almost always an issue; therefore, you should start a routine to prevent constipation when taking opioids.  Prevention (with a stool softener and laxative) is better than treatment.

            Although opioids may produce side effects, most people are not allergic to them.  You may experience nausea, drowsiness, or itching, but a true allergy would involve difficulty breathing.  Tolerance to side effects, except for constipation, will develop.  Describe to your doctor what symptoms you experience when you take an opioid, and let him or her determine if it is a side effect or a true allergy.

            Always report to your physician how well the medication is working to relieve your pain.  Very often, if the medication relieves the pain but does not last until the next does, the right drug is being used but perhaps should be taken at shorter intervals.  If the medication helps a little but not enough, it may indicate that a higher does is needed.  And if medication does not help at all, a different medication should be prescribed.  Also report any new pain or change in pain to your physician.

            Non-pharmacologic interventions for pain management should be incorporated into the plan of care as well.  These interventions may include massage therapy, relaxation therapy, prayer and counseling.  Just like pain medication, these do not last indefinitely.  However if used regularly they can help relieve pain.

            Your healthcare team is interested in control-ling your pain.  You should expect pain relief.  A decrease in pain is associated with improved quality of life, more successful adherence to treatment regimens, and even prolonged life expectancy.

Editor’s Note:  Patricia Beach is a clinical nurse specialist in Oncology and palliative Care at St. Vincent Mercy Medical Center in Toledo, OH.

Reprinted by permission of COPING® magazine, www.copingmag.com.

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FACTS ABOUT OVARIAN CANCER

• Ovarian cancer, the deadliest of gynecologic cancers...is the fifth leading cause of cancer death among women.
  
• Ovarian cancer occurs in 1 out of 57 women.
  
• The American Cancer Society is predicting an increase in incidence and deaths.
  
• Ovarian cancer death in 2004: 16,090.
  
• Deaths in 2005: 16,210.
  
• Currently, 50% of the women diagnosed with ovarian cancer die from it within five years.
  
• Survival rate of ovarian cancer remains at 41%.
  
• Ovarian cancer is very treatable when it is detected early...But, the vast majority of cases are not diagnosed until the cancer has spread beyond the ovaries.
  
• Only 25% of ovarian cancer cases in the U.S. are found in the early stages.
  
• When diagnosed in advanced stages, the chance of five-year survival is only about 15-20%.
  
  There is hope...
  
  
• In cases where ovarian cancer is detected before it has spread beyond the ovaries, more than 90% of women will survive longer than five years.
  
• Early recognition of symptoms is the best way to save women¡¦ lives.
  
• Raising public awareness of ovarian cancer by educating doctors and women about the disease could save lives.
  
• When diagnosed in stage one, there is a 95% chance of being cured. Unfortunately, only 25% of cases are diagnosed in stage one.
  
• Ovarian cancer often presents with the following symptoms: abdominal pressure, bloating or discomfort; nausea, indigestion, or gas; constipation, diarrhea, or frequent urination; abnormal bleeding; unusual fatigue; unexplained weight loss or gain; shortness of breath
  
• Without increased education about ovarian cancer, many women and their doctors will continue to ignore or misinterpret the symptoms of the disease.
  
• There is still no reliable and easy-to-administer screening test like the Pap smear for cervical cancer and the mammogram for breast cancer.
  
• More ovarian cancer research is needed to develop early detection tools, better therapies, cures and to prevent the disease.
  

Join in the fight to conquer this disease. Learn the risks. Learn the symptoms. Join the fight.