Administration preserves patient access to certain medications

On March 6, 2014 the Cancer Policy Institute at the Cancer Support Community (CSC) submitted a letter to the Centers for Medicare & Medicaid Services (CMS) raising concerns about how a proposed change in policy could hinder cancer patients’ access to certain types of medication.  In response to the concerns of CSC and many members of the patient advocacy community, on March 10, 2014, CMS announced that they have withdrawn their proposed changes.

Under current law, CMS identifies six categories of medications as “protected classes”.  Medicare beneficiaries who take medicine to treat their cancer, have medical conditions which require them to take anti-seizure medicine, are HIV-positive, need to take immunosuppressant drugs or have a mental health condition for which they are prescribed antidepressants or antipsychotics are all guaranteed coverage for any of these medicines.  CMS had proposed to remove protected class status for three of these classes of drugs – immunosuppressant drugs, antidepressants and antipsychotics.  CSC and other patient advocates wrote to CMS to share their concerns that if this policy was instituted, patients may experience increased burden, uncertainty and delays in treatment if they couldn’t easily access the drugs prescribed by their physician.

As a nonprofit organization that provides direct services, research and works to improve the quality of care patients with cancer receive, CSC focuses on the importance of treating both the mind and body in order to improve patient outcomes.  Up to half of all patients with cancer experience distress, approximately 15-25% experience depression and about 16% are prescribed an antidepressant.  Furthermore, data from CSC’s Research and Training Institute shows the leading cause of distress for those living with cancer is a disruption to a patient’s work or family life routine.  CSC was concerned that the proposed regulation could have interfered with patient access to certain kinds of medication and negatively impact people with cancer.

CSC thanks CMS for not changing its current policy and thereby preserving Medicare beneficiaries’ full access to these special categories of medicines—people with cancer and other complex medical conditions need seamless access to life-saving and life-stabilizing prescription drugs.  The full comment letter, in addition to other cancer coalition letters supported by CSC can be found by clicking here.

If you have questions or concerns regarding your own cancer journey, please call CSC’s Cancer Support Helpline at 1-888-793-9355. We are ready to answer your call and assist you with any cancer-related issues.

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Tips for long-distance caregivers

When someone you love is diagnosed with cancer, it’s normal to feel at a loss for how you should react and what you can do to help. But when someone you love has cancer, and you live far away from them, it can be even more overwhelming and confusing. The term “long-distance caregiver” is often used to describe anyone who provides some form physical, emotional, spiritual, financial or logistical support to a person with a serious illness, despite living at a distance from the person needing care.

Despite being a long-distance caregiver, you still play a vital role in providing comfort, hope and support. There are several things you can do from a distance to ensure that your loved one has the support they need throughout their cancer journey.

Evaluate the situation. Because you can’t always offer direct support, evaluate the situation to determine what you can actually do to help, whether it’s through phone calls, information gathering or assisting with long-term plans. You can adapt your actions as needs change.

Create an emergency contact list. Since you cannot physically be present to provide direct support, make sure that there is a list of people who can help your loved one when needed. Work with your loved one and local caregivers to create an up-to-date list of phone numbers and email addresses for doctors, pharmacists, case managers, employers, support groups, friends, neighbors and family members. This list will help you to take comfort in knowing your loved one is cared for even when you can’t be there and will help lighten the load for other caregivers.
Learn how to manage negative emotions. It’s common have feelings such as guilt, sadness or anger when there’s a difference between the care you would like to provide (like being able to be with your loved one during treatment and other important moments) and the real demands of your life, such as work or family commitments.  Some ways to avoid allowing these emotions to cloud your decisions include admitting your feelings, finding someone else who can help your loved one, planning a future to be with your loved one and taking time to care for yourself.
Provide special care when visiting. When you do get a chance to visit your loved one, it is helpful to be prepared. Sometimes the purpose of the visit could be to provide company and emotional support, while other times it may include taking part in important meetings or decisions.  Maintaining open and honest communication about when you can and cannot visit and what you can and cannot accomplish during visits can help you to have a smooth and enjoyable time with your loved one.
 Use your resources. There are many resources available to your loved one as someone living with a cancer diagnosis, and to you as a long-distance caregiver that can make your journey easier. Resources range from emotional support to educational support to financial support. Don’t hesitate to use any of these resources to help ease the burden on yourself and your loved one.

Acting as a long-distance caregiver can be a very complex and unique situation, but you’re not alone. If you or your loved one ever has questions or feels overwhelmed contact the Cancer Support Helpline Mon-Fri 9 a.m.-8p.m.  For more helpful tips check out Frankly Speaking About Cancer: Long Distance Caregiving

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10 actions you can take to improve your quality of life

There is no right or wrong way to deal with cancer, but there are actions you can take while dealing with cancer that can help you to feel in control during your cancer journey. Below is an excerpt from The Cancer Support Community’s newly updated and redesigned educational resource Frankly Speaking About Cancer: Treatments and Side Effects. This free booklet explores cancer treatment options, potential side effects associated with these treatments and tips to help manage side effects and communicate with your health care team. It also contains a planner to help you manage appointments, treatments, mediations, test results and side effects. Click here to order or download your copy today.

Pace Yourself. Try to take one moment at a time and solve on problem at a time. Allow your mind to focus on what you can control, rather than what you can’t control (such as the “unknowns”), or the cancer itself.

Ask for Support. Be open with your family and friends about how you feel and be honest about how they can support you. Offer specific examples, such as driving you to appointments, researching insurance questions, or just listening when you want to talk. Consider taking someone with you to medical appointments to take notes and help you remember instructions. 

Communicate with your health care team. Prepare your list of questions for each appointment and take the time you need to get answers. If you need more time with your doctor, ask. Longer appointments may be available. It is also helpful to get a second opinion so you can feel informed and confident in your medical team. Your health care team wants to hear from you. If you are struggling with side effects at home, it is encouraged to contact your health care team by phone.

Retain as much control of your life as is reasonable. Work with your medical team and loved ones to develop a plan that gives you as much control over your life as you desire and can comfortably handle during and after treatment.

Acknowledge and express your feelings. A cancer diagnosis typically triggers strong emotions, such as fear. Find constructive ways to express your feelings through writing, talking, physical activity or creative pursuits. Professional help is advised if depression or anxiety is affecting you. Do not be hesitant to express this to your team, so that you can obtain expert assistance. If you are unsure if you are suffering from depression or anxiety, talk to your doctor.

Seek support from others living with cancer. People gain comfort and strength when they talk to others coping with similar issues. Your doctor, nurse, or social worker can direct you to local support groups, or contact the Cancer Support Community.

Learn relaxation techniques. Relaxation” refers to a calm, controlled physical state. Relaxation is not always easy, and you might have to learn how. Consider things that make you feel relaxed: music, a good book, walking, yoga, meditation, or cooking. The goal is to feel peace and enjoy the moment.

Do what you enjoy. Try to find humor in the unexpected moments of each day. Consider activities that you can enjoy and can do comfortably.

Make healthy lifestyle choices.  It is never too late to make changes to enhance your well-being. Set realistic goals and build on them. Improve your diet, include exercises into your routine that feel good (your doctor can recommend safe exercises), rest and maintain intimacy- these are all ways to feel better both physically and emotionally.

Maintain a spirit of hope.  Hope is desirable and reasonable. Even if your cancer experience is complicated, you can set small goals and enjoy daily pleasures. You can redefine how you experience hope by focusing on the activities and connections that give you happiness. Hope is contagious. Surround yourself with people and things that bring this out.

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Cancer cannot take away our memories

Steve is a frequent guest blogger who shared his inspirational poem on the Cancer Support Community website. To share your own story and be featured in the CSC blog, click here

At first we think memories are born within our minds
But when those tears begin to run on down our face
We feel the tenderness within our hearts and recall another time
A time where innocence hugged the horizon always falling in place

Cancer cannot steal our memories
as each heartbeat remembers a moment filled with smiles
and where the simple things like visiting a friend gave us butterflies
We reminisce with fondness those that shared with us a part of their lives
and like a melody to our favorite song we hum each verse to sooth our worries

Cancer cannot steal our memories
No matter how many cracks our heart endures
the momentary pause in between each beat
takes a baby step as it calms our fears
and whispers to us that our past was once a future

Cancer cannot steal our memories
To all of you who know someone where cancer rudely stormed into their lives
You can make a difference to your fellow survivors by comforting them in their journey
Each time an encouraging word or an offering of compassion gently arrives
It creates one more memory with its own unique story that can held for an eternity

-Heartofsoul  Steve

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New CSC tools designed to help people with metastatic skin cancers

Whether it’s a quick beach getaway to escape the snow or an upcoming spring break, long gone are the days of basking in the sun without a care. As science and epidemiology have evolved, we are now all too aware of the sun’s harmful rays and the damage it can do, especially among people with light-colored skin. But the truth is that no one is truly immune. Skin cancer accounts for half of all cancers in the U.S. Although the vast majority are due to exposure to the sun or ultraviolet radiation (for example, tanning beds), there are other causes as well.

Most skin cancers are found early and can be cured. But skin cancer can spread to other organs or distant tissues. Once the cancer has spread or metastasized, it’s a different story.

Of all skin cancer, melanoma is the most likely to become metastatic and, until recently, the picture was fairly grim. But, with several recently approved drugs – the first new treatments in over a decade – it means some people with metastatic melanoma are living longer and better than ever.

“We are in a sense rewriting history and changing the way advanced melanoma is treated because of improved survival and outcomes in some patients on newer treatments,” says Dr. Tara Gangadhar, Abramson Cancer Center of the University of Pennsylvania.

Although new treatments are advancing quickly, nothing is a home run yet. Experts and advocates say it’s critical to find a doctor who specializes in a person’s specific skin cancer. Clinical trials, which test new treatments or a combination of treatments, may be an option for many people, especially those with metastatic disease, so it’s important to learn about all of the treatment options before deciding what the right path is for you. Some treatments can make someone ineligible to participate in a study.

Of course, each person living with Stage IV melanoma or other skin cancer has his/her own story, and may respond differently to various types of treatment. Still, people with metastatic disease often share similar concerns. For example, they typically:

  • Worry about how treatments will affect them, their families and their ability to fulfill their roles at home and work
  • Need greater emotional and spiritual support
  • Face hardships when it comes to paying for care or securing disability or life insurance
  • Are fearful about what the diagnosis means and if the recommended treatment will actually work

It’s easy to become overwhelmed. But there is help and support.

The Cancer Support Community is launching new resources to give patients and caregivers access to credible, evidence-based, medically reviewed information and resources about metastatic melanoma and advanced basal cell carcinoma – two very different skin cancers. Frankly Speaking About Cancer: Advanced Skin Cancers includes up-to-date online content, advice from others, fact sheets and resources. It reviews the latest treatment options, possible side effects, questions to ask your health team and things they need to know throughout your care, as well as steps you might consider to better cope with the disease. To order a free fact sheet about metastatic melanoma or advanced basal cell carcinoma, or to find out more, visit

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