Judy Kneece

Judy Kneece, RN, OCN is is the President of EduCare, Inc., a pioneer in developing new frontiers in patient education and healthcare professional training. She currently serves on the American College of Surgeons' National Accreditation for Breast Centers Education Committee and on the Advisory Board for the national Clinical Breast Care Project for Windber/Walter Reed Medical Center.

Judy has invested her life into changing the way healthcare is provided to breast cancer patients. Judy has published over 40 articles in national publications about patient-focused care, breast cancer navigation, survivorship and comprehensive breast center development and, in May 2007, was awarded an honorary Doctor of Science degree from Charleston Southern University for her outstanding work and contribution to improve cancer care delivery.

Questions & Responses:

Question Eight: I am currently on an aromatase inhibitor and have been experiencing terrible joint pain. Do you have any recommendations for minimizing this pain?

One of the side effects of anastrozole is joint aches and pain (arthralgia). The reality is that joint pain can rob you of your quality of life and limit your ability to function at full capacity. There are interventions that you can try that may help reduce and control your pain. Always consult your healthcare provider to be sure that there are no limitations on your health.

The good news is studies show that most patients can manage their pain with over-the-counter acetaminophen or NSAIDs (nonsteroidal anti-inflammatory drugs) such as aspirin, ibuprofen or Naproxen. NSAIDs may cause stomach distress and increased potential for bleeding. These medications should be taken with food.

One of the best references on the topic of management of aromatase induced joint pain was published in Current Oncology by C. Thorne, M.D. This article can be found online; it includes the medication management recommendations for healthcare providers to use in controlling joint pain. This is a very useful article if you need to review medications used in joint pain.

Other appropriate intervention for pain management in arthralgia (pain in the joints) may be a combination of lifestyle changes.

Lifestyle changes for joint pain management:

• Perform weight-bearing exercise at least five days a week.
• Participate in exercises such as yoga or Pilates that stretch muscles, increase joint mobility to regain strength, increase flexibility, relieve tension and reduce fatigue. These exercises are highly recommended.
• Abstain from smoking.
• Limit alcohol consumption.
• Take dietary calcium supplements and vitamin D3 for bone protection.
• Use heat in the form of warm showers and warm baths to reduce pain.
• Have a massage, especially those using heated warm towels or hot stones (patients with spinal osteoporosis should avoid deep muscle massage).
• Try acupuncture by a trained, certified professional or try acupressure techniques. Patients investigated at the Columbia University College of Physicians and Surgeons suggested that acupuncture could be a potentially useful intervention for improvements in reducing the intensity of body pain and osteoarthritis from joint pain.
• Try over-the-counter topical medications such as capsaicin and methylsalicylate to aid in pain relief.
• Learn techniques for relaxation including biofeedback and visual imagery.

Healthcare Professional Consultation:

• Be evaluated by a healthcare profession for depression. Depression is common in many patients dealing with chronic pain. Medications for depression increases mood, reduces anxiety and are often helpful in chronic pain management.
• Ask for prescription pain medication when pain is not relieved by over-the-counter drugs and a combination of the above interventions. Drugs used include Celecoxib, a cyclooxygenase inhibitor; Tramadol; pain modifiers such as nortriptyline and Gabapetin and narcotics.
• Consult your doctor or physical therapists about transcutaneous electrical nerve stimulation.

Question Seven: Can you offer any advice about managing lymphedema, specifically whether there are any new recommendations regarding exercise and/or lifting weights?

It is important for breast cancer patients to know that lymphedema usually has nothing to do with their cancer. Lymphedema may become a problem for some women who have undergone lymph node removal for breast cancer or had radiation therapy that affected the axilla (underarm). This condition occurs because lymph nodes and vessels in the breast have been removed during surgery, scar tissue has formed after surgery or radiation therapy has caused changes in the area called fibrosis. These conditions slow down the removal of the lymphatic fluid that accumulates in the breast and arm area, resulting in swelling of the arm and hand or the lumpectomy breast.

Exercise and Lymphedema
Yes, there are new recommendations concerning use of the surgical arm after breast surgery. A new study from the University Of Pennsylvania School Of Medicine was conducted with breast cancer patients who had pre-existing lymphedema. The study concluded that patients who participated in progressive weight-lifting exercises for 13 weeks had a reduction in symptoms, compared to women who did not lift weights during that time. Previously, it has been recommended that women with lymphedema avoid weight-lifting. However, this new study showed that participating in a safe, structured weight-lifting routine, supervised by a certified fitness professional can help women with lymphedema take control of their symptoms and reap the benefits of resistance training, including increased bone density and weight control.
It is recommended that a well-fitting, elastic compression sleeve (discussed below) be worn during workouts and that a trained professional supervise correct techniques for weight-lifting. Consult your healthcare team for their advice.

Elastic Sleeve for Lymphedema
A special elastic sleeve, designed to reduce swelling, may be ordered by the physician. The sleeve looks a lot like support hose and can be worn under long-sleeved clothing. A professional fitter will measure the arm and order a customized sleeve to fit your measurements. The sleeve should also be worn during workouts.

Elastic sleeve tips:

• Get your physician to write a prescription for insurance reimbursement.
• Purchase two sleeves so that you can wash one while wearing the other one.
• Wash sleeve in lukewarm water and allow sleeve to air dry thoroughly. Do not wring it out while wet. Do not put it in the dryer.
• Do not wear a sleeve that does not fit well. This causes skin irritation and can increase your swelling after wearing.
• If you have a problem with the top of the sleeve rolling down on the arm, ask for a water-soluble adhesive lotion to apply under the top of the sleeve. This adhesive washes off easily with soap and water when the sleeve is removed.
• Have the fitter re-measure your arm periodically to see if the sleeve is still the appropriate size. To be effective in reducing swelling, sleeves must fit properly.
• Replace your sleeve about every six months because it will stretch and lose elasticity from repeated use. Contact your insurance provider and ask how often they will pay for a sleeve replacement.
• It is suggested that you purchase and wear an elastic sleeve for long airline flights. Pressure changes can cause an increase in lymphedema.

Lymphedema Massage
Another method for controlling lymphedema is a gentle, specialized massage technique, Manual Lymph Drainage (MLD), also known as complex decongestive physiotherapy. It is performed by some trained physical therapists and massage therapists to remove swelling from the arm. This method stimulates the skin and underlying lymphatic vessels by a special technique that is different from traditional massage therapy. Traditional massage may increase, rather than decrease, swelling because it is so vigorous. MLD therapists are trained to delicately move their hands over the surface of the skin slowly in circular or pumping motions to move fluid toward the shoulder. These sessions last approximately an hour. At the conclusion of the massage, the arm is wrapped in a special bandage to prevent re-accumulation of fluid in the arm. Instructions are given on how to massage the arm with the bandage in place. This method of massage and bandaging is performed several times a week for several weeks or until swelling has been reduced to a manageable level. Patients and family members are often instructed in the massage and bandaging techniques so that treatment may be continued at home.

When seeking treatment for lymphedema, always ask if the therapist is trained in or has certification in manual lymph drainage for breast cancer. If your physician does not have a recommended therapist, you can find a list of specialists at the National Lymphedema Network.

Compression Pumps
Compression pumps for lymphedema are available to remove accumulated fluid. However, they should only be used under recommendation from your physician and that a trained professional monitor your progress. Overuse or too much pressure may increase swelling.

Diuretics for Lymphedema
Many women ask about medications to remove accumulated fluid. Medications called diuretics that remove excess water from your entire body are not generally recommended for treating lymphedema. Swelling is caused by leakage of protein from the vessels in the arm. Diuretics cannot remove the protein that has seeped out into the arm. They may remove some of the water temporarily, but once you stop taking the diuretics, swelling returns because the excess protein in the arm pulls the fluid back.

Question Six: I am almost two years out from my original diagnosis, about a year out from active treatment and have been on Tamoxifen since July 2008. Despite sleeping 12 to 14 hours a day, eating balanced meals and exercising almost daily, I still struggle with extreme fatigue. My doctors say that going off Tamoxifen is not an option. Is there anything else I can do?

My heart goes out to you and the frustration you must be feeling at dealing with constant fatigue. You may find some comfort in knowing that many patients struggle with a lack of energy after treatments—you are not alone. EduCare conducted national focus groups in 11 centers and surveyed breast cancer patients after chemotherapy regarding quality of life issues. The issue of fatigue was addressed with the following results: 40% of patients struggled with chronic fatigue six months after completion of their chemotherapy and 22% still struggled a year after completion. These women expressed the fact that they had been told that their fatigue would end when treatment ended and were surprised that it was still a problem. For some women, fatigue becomes a chronic problem and apparently you are in this group.

One of the first things I recommend for patients to do is go see a physician who will give you a good physical that includes a thyroid evaluation. Some women become hypothyroid after treatment which causes symptoms of excessive fatigue. The next evaluation would be for depression. Often patients will not recognize that they are depressed. Chronic, clinical depression causes fatigue to increase. Medications for depression are often very effective if someone has validated symptoms of depression along with their fatigue. The same medications used in treating depression are also helpful in relieving hot flashes and night sweats which interrupt sleep and increase fatigue the next day. If you have not had a recent evaluation for these, see your doctor.

It sounds as if you have tried exercise. However, I will offer some guidelines for diet and balancing exercise with rest, in case there is something that you can adjust in your routine. [Editor's note: Read Ms. Kneece's complete answer–including the guidelines for diet and exercise– here.]

Question Five: My doctor is recommending treatment with Adriamycin, but I have read that there can be side effects that could damage my heart. As a young woman, I am concerned about how this could affect me in the future. Can you offer any insight?

Adriamycin has been used by oncologists for years to treat cancer. It is because of this long history of observing side effects that the drug has a lifetime limit to reduce any potential damage to the heart muscle. You can receive only up to a certain amount of adriamycin during your lifetime, called a "lifetime maximum dose." Your physician is well aware of the safe levels recommended by experts.

Before giving the drug, your physician will monitor your heart function and health history to be assured that you are a good candidate for the drug. The drug dose may be lower if you have a history of heart disease or risk factors such as radiation to the chest, advancing age and previous use of other heart-toxic drugs. Your doctor will monitor your heart closely during your treatment.

Adriamycin has been a powerful weapon against breast cancer, especially in younger women. Speak to your physicians about your concerns and specific questions about how they will evaluate your heart functions and monitor you during treatment.

Question Four: I'm undergoing chemo right now and not really experiencing any side effects. Is my treatment working?

This is wonderful. No one can accurately predict who will experience [side effects] and what type of side effects will occur. This varies because people are all so different. With the same drugs and dosage, some women will have side effects like severe nausea while others do not. Physicians don't determine if the treatment is working because of the presence or absence of side effect. Treatment can work in the absence of side effects. Consider yourself blessed.

Question Three: Do you have any suggestions for managing hot flashes?

Hot flashes are sensations of increased body temperature. A hot flash usually begins in one region of the body and spreads quickly. A sudden wave of warmth in the face, neck and chest occurs and usually lasts between a minute and several minutes. Researchers attribute hot flashes to irregular expansion and contraction of the small blood vessels of the skin, which produce perspiration and blushing. Hot flashes are usually caused by a lack of estrogen. The sensation from a hot flash is unexpected and can be very bothersome. Most women, however, notice that their hot flashes tend to occur during certain times of the day. Most chemotherapy drugs, including anti-hormonal drugs such as Tamoxifen, cause hot flashes.

The best management technique is to control body temperature and the immediate environment. Hot flashes can also be associated with nausea, dizziness, headache, irregular heartbeat pattern and sweating. Hot flashes are not a disease, even though they may feel that way.

Suggestions for coping with hot flashes:

• Notice a time or pattern for your hot flashes. Expecting them can give you some sense of control.
• Dress in light, layered clothing so that outer garments can be removed during a hot flash. Avoid turtleneck sweaters. Wear slip-on shoes that can be quickly removed so you can place your feet on the cold floor.
• Avoid hot environments, if possible.
• Drink cold liquids; avoid hot drinks. When a hot flash starts, try drinking cold water to reduce the sensation and keep yourself hydrated.
• Sleep in a cool room. Use cotton sheets and bed coverings that can be quickly removed. Select cotton pajamas or nightgowns.
• Turn on an electric fan.
• Avoid highly seasoned foods, alcohol and drinks with large amounts of caffeine (coffee, tea, soft drinks).
• Avoid stressful situations that can stimulate you emotionally.
• Avoid activities that can increase body temperature such as hot baths, saunas and sunbathing.
• Learn mental visualization techniques that can reduce the intensity of the sensation.

Medications
If your hot flashes are interfering with your quality of life and are not managed with the above suggestions, talk to your doctor. Several of the selective serotonin reuptake inhibitors (SSRIs) medications have proven effective in reducing hot flashes. If you are taking Tamoxifen, the SSRIs citalopram (Celexa), escitalopram (Lexapro) and fluvoxamine (Luvox) are recommended in recent studies because they do not to interfere with Tamoxifen's effectiveness.

Question Two: My chemotherapy is making me extremely nauseous. Do you have any helpful tips?

During chemotherapy some women experience only nausea, while others have nausea and vomiting. The following tips may be helpful.

Nausea tips:

• If you have not received a prescription for nausea medication, call your doctor. If you have been taking a prescription medication and it is not working, call your doctor for another type. People respond differently to medication and often have to try several before they find the medication that relieves their nausea. I may also take a combination of medications. Be persistent in trying to find the right medication.
• If nausea is persistent throughout the day, take the medication on a regular schedule rather than when you feel nauseated (prn).
• If nausea is a problem when you attempt to eat, take your nausea medication 30 – 60 minutes before smelling food or trying to eat.
• Studies now show that ginger (fresh ginger or capsules, not flavoring) can decrease nausea when taken 30 minutes before a meal. This does not require a prescription and is well tolerated by most women. It does not cause side effects such as drowsiness like many prescription medications. Benadryl (antihistamine) is another over-the-counter medication that helps nausea but can cause some drowsiness.
• Cold food is better tolerated because it has fewer aromas. Ask your family to allow your meal to reach room temperature to reduce odors before bringing it to you. Try eating chicken or turkey cold instead of hot.
• Avoid foods high in fat; they may cause nausea to increase. Bland white foods such as Cream of Wheat, mashed potatoes, rice and cottage cheese have been found to be more easily tolerated.
• Keep a small amount of food in your stomach between meals such as salty crackers, bread with a small amount of peanut butter or bananas. Some nausea is increased because of higher levels of acidity in the stomach and food serves as a buffer to reduce it.

Vomiting tips:

Question One: I have metastatic breast cancer and have been on Zometa for a few years. I have heard about other women experiencing problems with their jaw bone. Should I be concerned about this?

Zometa has been known to cause some people to have bone loss in the jaw, called osteonecrosis of the jaw. Symptoms of osteonecrosis may include jaw pain. Other symptoms that may also occur are swelling of the soft tissues in the area, numbness, loose teeth, gum infection or slow healing after injury or surgery involving the gums. The risk of these symptoms occurring after taking Zometa increases if you have previously been treated with chemotherapy or steroids.

Jaw pain while taking zometa should be reported to an oncologist or physician for an evaluation. Only after a physician thoroughly evaluates the area and the degree of the pain can he/she determine if this is a worrisome side effect that needs additional attention. Call your physician and report your jaw pain. Physicians need and depend on open communication from patients about side effects experienced to know if a medication requires additional evaluation to monitor its effectiveness.