Melanoma Archives

Skin cancer is the most common type of cancer and usually forms in skin that has been exposed to sunlight, but can occur anywhere on the body.

More resources for Melanoma from Patient Empowerment Network.

Cancer Survivors: Managing Emotions After Cancer Treatment

Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:

Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.

Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.

Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.

Social and Emotional Repercussions of Cancer

In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:

Fear of Recurrence

Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.

Pain

Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.

Depression

It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.

Body Image and Self-esteem

Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.

Spirituality

Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.

Survivor’s Fault

Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.

Relations

Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.

Social and Work Life

Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.

You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.


About the author: Diane H. Wong is copywriter at write essay for me service. Besides, she is a professional nutritionist. So she is going to start writing her own blog. It can help her share her knowledge with others.

10 Ways of Thriving After Cancer

First and foremost, “surviving” cancer is amazing. After all, cancer is one of the deadliest diseases in the world! So, if you are a survivor, you are indeed worthy of praise. 

There are many types of cancers out there. One thing that they all have in common is that they are a result of uncontrolled growth of abnormal cells anywhere in a body. Early detection of cancerous growth results in a good prognosis as there is nearly no definitive cure for any form of cancer at its late stages.

Again, whether yours was at its late-stage or not and you survived, you are a winner! At this point, you should hold no reserve about cancer resurfacing and instead THRIVE. 

Now that you have survived cancer, the next step is reintegration back into society and doing the best you can to thrive while doing so. 

1. Battle your fear & anxiety head-on 

Long after getting cleared of cancer, survivors have to fight an emotional battle of fear and anxiety. No matter what the medical reports say about their health status, there is the seemingly never-ending fear of the cancer returning. 

This emotional turmoil is insurmountable and almost never avoidable unless you normally just have a strong will. You must quench this fear so that you can thrive.  A chat with your doctor is vital. Disclose whatever concerns you have about your health. Your doctor may even schedule frequent testing and care plans to make you feel better. 

2. Be devoted to your physical therapy sessions 

Cancer is usually for the long term. So, when the health providers eventually manage to get rid of all the cancerous growths, you may be left with a physical limitation like immobility. Such a physical limitation may make life less enjoyable, thus your doctor’s statutory recommendation for physiotherapy.

 Be dedicated to treatment sessions and work closely with the physical therapist as well as your loved ones. Don’t be afraid to ask for continued support as you heal.

3. Try a new hobby 

Don’t rush to get back to your old self before cancer. Try to enjoy the process more by finding new sports or leisure activities that fill your time. 

So, instead of getting mopey and worrying over cancer resurfacing, try knitting for a change, go golfing, try swimming! There is nothing too small or too big to try, and the main goal is to get you taken by any activity other than sitting down and getting paranoid. 

4. Consider returning to work

A defining part of getting reintegrated back into society after cancer is a career. If you were working before cancer, going back to work can help redefine your life. 

If you weren’t, try finding a new skill or going job-seeking. This gives you a sense of normalcy, but even better, it occupies your time! Remember, one of the most important ways to thrive after a battle with cancer is to not dwell on the past and simply enjoy the moment. 

5. Find intimacy with your loved ones 

There is nothing better than speaking to people who genuinely love you. Such emotional talks are sure to renew your confidence and help you build strong emotional support. If you are dating or married, it’ll help a great deal to bear your thoughts before your partner. Keeping it all inside won’t help and may even make you distant from them. 

6. If possible, start exercising

Numerous benefits accompany exercise. These range between boosting your physical endurance to giving your mental health a much-needed boost. 

Aside from that, nothing beats that sense of accomplishment that comes with completing an exercise session every day. Before starting an exercise regime, tell your doctor; and you may have him refer you to a physical therapist with knowledge of care for cancer survivors like you. 

If you are strong enough to exercise independently, start small with home workouts and build your way up to going for a walk at the park and then the gym. 

7. Make A List of Your Fears

This is on emotional terrain. Write down your deepest fears about life after cancer or what you think may prevent you from enjoying this new phase. This may include fear of the cancer returning, fears about your health overall, concerns of satisfying your partner in bed like you once did, fears of losing your job or doing poorly at it, and many more others. 

No matter how many they are, penning these fears down on paper can help you tackle them. After writing, you may even discover that some of these are so insignificant and shouldn’t be any trouble. Either way, you are tackling these problems head-on. 

8. Let go of the past 

This is an essential task if you want to thrive following a battle with cancer. Letting go of the past may be harder for people who have been fighting bouts of cancer over a significant number of years, but there is indeed nothing better than finding a new you. 

Cancer puts a dent in your mental health, so it may pose a challenge to let go of your history. If this is you, speaking to a counselor or even your doctor will be beneficial. 

9. Accept that there are going to be bad days 

It is a part of living to have good and bad days. As a cancer survivor, you can’t escape this, and you may even be more vulnerable, having battled one of the world’s deadliest diseases. As you strive to get back to normalcy, you have to realize that not every day will be good and that the process may be a lot harder than you expect. 

An optimistic attitude and never giving up are crucial to overcoming the dismay or depression that may set in when you’re not successful at something you try to do. You can also create a backup plan for such days e.g., take a walk with your partner, go to the cinema, etc. 

10. Share your experience with support groups 

There is nothing like working closely with people who have had similar experiences with you. Whether they are still battling cancer or not, speaking to others about your own experience surviving the disease will give them a ray of hope. It will equally do you a lot of good. 


Resource links: www.aicr.org, www.curetoday.com, www.inovanewsroom.org

PEN-Powered Activity Guide

Empowered! Podcast: Meet Andrea Conners

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.


How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer.  The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for.  You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb.   Breast cancer survivor, Nicole McClean[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease:  “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties.  Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc),  is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.”  Breast  surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.”  The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“  

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises,  “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.”  Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

Don’t ask her what she needs, just do something that she needs,”  recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help.  You may have to drop a high priority task but when the call for help comes. Go!” 

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again. 

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy.  Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense)  recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget. 

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbour who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD[2], author of Braving Chemo, writes:  “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things. 

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.”  Breast cancer blogger, Sheri[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources  and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer [5]  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.”  Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,”  she points out.  Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy.  but it’s an important balancing act as a good friend.  In Tips for Being A Great Cancer Friend, Steve Rubin,[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you.   Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment.  Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”  

At the same time, Terri Coutee advises gentle persistence:  “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,”  she says.  Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done.  In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. [7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”


[1] Nicole McClean. My Fabulous Boobies.

[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

[3] Life After Why

[4] Terri Coutee, DiepCJourney

[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

[6] Steve Rubin, The (Other) C Word

[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Notable News February 2020

February may be a short month, but there is no shortage of new and exciting cancer research and treatment news. Could cervical cancer be eliminated for good? Are prebiotics the key to stopping melanoma? Well, take a bite of asparagus and read on to find out.

Vegetables are always an option for healthy eating, but you might want to consider adding (or increasing) two, in particular, to your diet. Asparagus and onions are sources of a prebiotic, and scientists have found that prebiotics help the immune system fight cancer in mice, reports genengnews.com. When the prebiotics, mucin and inulin, were fed to mice, they not only boosted the immune system, but they slowed the growth of implanted melanoma tumors, and delayed drug resistance. A delay in colon cancer growth was also noted. Prebiotics are food for bacteria and they cause growth of the good gut microbial communities, changing their make up, and thus causing the anti-cancer effect. The researchers say the study highlights the importance of the gut microbiome in treating cancer. Mucin is a protein found in intestinal mucus, and inulin is a plant fiber found in asparagus and onions. Learn more here.

With some perseverance and dedication, the World Health Organization (WHO) and other professionals believe cervical cancer could indeed be eliminated by 2120 reports, medicalnewstoday.com. Elimination could occur even sooner in some areas of the world. There are two separate studies that indicate the possibility. One study finds that vaccinating girls against the human papillomavirus (HPV), especially in low and middle income countries, could lead to an 89.4 percent reduction in the cancer. HPV is the top risk factor for cervical cancer. The other study shows that screening is another way cervical cancer could be eliminated. Experts say that if women have cervical cancer screenings just twice in their lifetimes, that could reduce the occurrence by 96.7 percent. The findings of the two studies are being used to establish the WHO’s cervical cancer elimination strategy, which will be presented in Switzerland in May. You can find more information here.

Screenings for cervical cancer may save lives, but could other screenings end up doing more harm than good? Early detection could be leading to over diagnosis of cancers, reports sciencealert.com. Believe it or not, not all cancer cells pose a health threat. Sometimes people have abnormal cells in their bodies for their whole lives and those cells never cause a problem. So, detection and treatment of these cells can potentially do more harm than good if people are being unnecessarily exposed to cancer treatments that can be stressful to the body, say scientists in Australia who have studied the risks of over diagnosing cancer. The researchers determined that breast and prostate cancers are the most over diagnosed and found that both cancers saw a 50 percent increase in occurrence when early screening tools, such as mammograms, were introduced. In the UK research shows that for every woman whose life is saved from breast cancer screening, three women will be diagnosed unnecessarily. The challenge is in finding balance between diagnosing and over diagnosing. More details about what the Australian researchers discovered can be found here.

When cancer is diagnosed and needs to be treated, it’s important to have options. The United States Food and Drug Administration (FDA) approved a new treatment for high-risk nonmuscle invasive bladder cancer, reports urotoday.com. Approved in early January, pembrolizumab (known as Keytruda), gives the 80,000 bladder cancer patients diagnosed each year, another possible treatment option. In trials, researchers found that 40 percent of patients had a complete response to the medication. Learn more about Keytruda’s journey to approval by the FDA here.

Another possible option may be available to women who want to have children, but are infertile after cancer treatment, reports cbsnews.com. A technique called in vitro maturation (IVM) recently resulted in the birth of a baby to a 34-year-old cancer survivor. The technique is still considered experimental, but you can learn more about it here.

Knowing your options is what patient empowerment is all about. Keep reading the Patient Empowerment Network blog to stay informed, and you’ll find more Notable News right here next month. Until then, don’t forget to eat some asparagus!

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

“You don’t look like you have cancer.”

More than one patient undergoing immunotherapy to treat cancer has reported hearing statements like that. Immunotherapy is one of the recent advances in cancer treatment that belie the stereotypes about the effects of cancer treatment. 

The side effects of immunotherapy are different from those associated with chemotherapy and radiation. However, that does not mean immunotherapy does not have side effects. Patients and care partners need to be aware of these potential side effects and to be vigilant in addressing them with their oncologists because they can signal more serious complications if left untreated.

What is Immunotherapy?

Despite the increase of immunotherapy treatment options in recent years and considerble media attention paid to advancements in this field, there remains confusion about immunotherapy and its side effects. Many cancer patients are unaware of whether immunotherapy treatments are available for their specific diagnosis. Others don’t know that genetic profiling of their tumors is usually required to determine if immunotherapy is an option and not all treatment centers routinely conduct genetic profiles of tumors. A  survey by The Cancer Support Community found that the majority of patients who received immunotherapy knew little to nothing about it prior to treatment and were unfamiliar with what to expect.

Immunotherapy works by manipulating the patient’s immune system to attack cancer cells. It is perceived as gentler and more natural than chemotherapy and radiation, without the same destructive effect on the body’s healthy tissues.  This, combined with a lack of prior understanding of immunotherapy, can lead patients and care partners ill-prepared for possible side effects.

Furthermore, immunotherapy is a category of therapies, not a single type of treatment. There are a variety of immunotherapy drugs, most of which are administered via infusion.  Side effects will vary by drug, the cancer and its location, treatment dose, and the patient’s overall health.

The following are the most common types of immunotherapy.

  • Checkpoint inhibitors use drugs to block proteins in the patient’s immune system that would otherwise restrain the immune system, often referred to as taking the “brakes” off the immune system.
  • CAR-T therapy modifies the patient’s T-cells in a lab to enhance their ability to bind to cancer cells and attack and kill them.
  • Oncolytic virus therapy uses genetically modified viruses to kill cancer cells.
  • Another therapy uses cytokines (small proteins that carry messages between cells) to stimulate the immune cells to attack cancer.

Immunotherapy can be part of combination therapy. It might be combined with chemotherapy. It might be used to shrink a tumor that is then surgically removed.  Or multiple immunotherapy drugs might be used simultaneously.

What Are The Side Effects?

With immunotherapies, side effects typically occur when the immune system gets too revved up from the treatment. The most common side effects for immunotherapy treatments are fatigue, headache, and fever with flu-like symptoms. Some people also experience general inflammation often in the form of a rash. Many melanoma patients report blotchy skin discoloration, called vitiligo, during treatment. These milder side effects can usually be managed with over-the-counter remedies and adjustments to daily activities.

For checkpoint inhibitors, the fastest growing segment of immunotherapy treatments, mild side effects occur in 30% – 50% of patients. Serious side effects typically occur in less than 5% of patients. (See “Understanding Immunotherapy Side Effects” from the National Comprehensive Cancer Network and the American Society of Clinical Oncology.)

Less common side effects are blisters, joint pain, thyroid inflammation, and colitis (inflamed colon resulting in diarrhea with cramping). Some patients who receive CAR T-cell therapy develop a condition known as cytokine release syndrome, which causes fever, elevated heart rate, low blood pressure, and rash. 

In rare cases, immunotherapy has resulted in lung inflammation, hepatitis, inflammation of the pituitary, and detrimental effects on the nervous and endocrine systems. In most cases, the conditions clear up when treatment ends.  However, there have been outcomes in which immunotherapy caused diabetes or tuberculosis.

“Overall there are fewer side effects [with immunotherapy],” explained Dr. Justin Gainor, a lung and esophageal cancer specialist at Mass General during an Immunotherapy Patient Summit hosted by the Cancer Research Institute. “But the immune system can affect anything from the top of the head down to the toes. Any organ has the potential to be affected.”

As the application of immunotherapy has expanded, so has our understanding of the potential side effects. Like most medical treatments, how one person responds to immunotherapy can be different from another even when the cancer diagnosis and drug therapy are the same.

The essential thing patients and care partners need to know about side effects is they should always be reported to their oncologist or nurse oncologist.

Why Patients Should Talk to Their Provider About Immunotherapy Side Effects

Because immunotherapy has created newer therapy options, there isn’t the volume of experiences as with older treatments. The infinite number of variables that patients provide once a treatment moves beyond clinical trials and into the general patient population generate more diverse outcomes.  And, as most therapies are less than 10 years old, there hasn’t been an opportunity to study the long-term effect of these therapies. This is why oncologists advise patients and their caregivers to be extra vigilant in noting any changes experienced during and after treatment.

Many side effects are easy to treat but medical providers want patients to be forthcoming in discussing any and all side effects. This is in part to improve understanding of side effects, but also because a mild cough or a case of diarrhea might be harbingers of a more systemic issue that will grow worse if left untreated.

Patients should not be hesitant to discuss side effects because they fear they will be taken off immunotherapy.  Sometimes a pause in treatment might be necessary, but the earlier the oncologist is made aware of a side effect, the less likely that will be necessary.

In addition, patients undergoing immunotherapy should always take the name(s) of their immunotherapy drugs and the name of their oncologist when seeing medical professionals outside of their cancer treatment team. This is especially important when visiting the ER.  Because immunotherapy drugs are newer and highly targeted to certain cancers, many medical professionals remain unfamiliar with drug interactions and treating related side effects.

Immunotherapy On The Rise

Immunotherapy treatments have resulted in reports of remission in cases that would’ve been deemed hopeless just five or 10 years ago.  The Federal Drug Administration (FDA) has approved various immunotherapy treatments for melanoma, lung cancer, head and neck cancer, bladder cancer, cervical cancer, liver cancer, stomach cancer, lymphoma, breast cancer, and most recently bladder cancer.  (Here is a list of  immunotherapies by cancer type from the Cancer Research Institute.)

“It’s revolutionized how we treat our patients,” says Dr. Gainor of Mass General about immunotherapy’s impact on lung and esophageal cancer.

Advances in immunotherapy research and trials continue to generate optimism and excitement. A clinical study in Houston is looking at using immunotherapy to prevent a recurrence. Researchers in Britain recently announced a discovery that might lead to advances in immunotherapy treatments to a much broader array of cancers.

While there is excitement around the field of immunotherapy and it has resulted in unprecedented success in treating some previously hard-to-treat cancers, it remains an option for a minority of cancer diagnoses.  It works best on solid tumors with more mutations, often referred to as having a high-mutational load or microsatellite instability (MSI) high. And it is not universally successful for every patient.

With hundreds of clinical trials involving immunotherapy alone or in combination with other therapies, it is certain more treatment options are on the horizon. As more therapies are developed and more patients with a greater variety of conditions undergo immunotherapy, we will also increase our understanding of potential side effects.

Side effects should not dissuade patients and care partners from considering immunotherapy if it is available or from advocating for genetic tests to deteimine if it is an option. Many patients undergoing immunotherapy have previously undergone chemotherapy and report that the side effects are fewer and milder by comparison.  The important thing is that patients and their partners know what to expect and communicate with their treatment team.

If the next 10 years in immunotherapy research and development are anything link eth elast 10, we can expect more exciting advancements in the battle against cancer. For more perspective on what’s ahead for immunotherapy see the Cancer Research Institute’s article: Cancer Immunotherapy in 2020 and Beyond.

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Triage Cancer’s Quick Guide to Health Insurance: Employer-Sponsored & Individual Plans

2019-Health-Insurance-Employer-Individual-Plans-Quick-Guide-rev

Triage Cancer’s Quick Guide to Health Insurance: Medicare

2019-Health-Insurance-Medicare-Quick-Guide-Final

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing

Complete Guide To Mindfulness

Suja Johnkutty Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. betterrelaxation.com

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Young Woman’s Melanoma Sparks Advocacy

This podcast was originally published by I had Cancer on July 16, 2019, here.

Jessica Rogowicz got her first melanoma diagnosis three days before her 25th birthday and another at age 29. Jessica, now 36, talks about her treatment and how she started a foundation for melanoma research and awareness. The I Had Cancer podcast provides personal and truthful conversations with cancer survivors along their journeys. Each episode will feature a different person with their unique perspective on their own fight against cancer. They are sharing their stories to help others who might be facing similar challenges and to say they went from “I Have Cancer” to “I Had Cancer.” If you would like to be a guest on a future I Had Cancer Podcast, send an email to IHadCancer@highmarkhealth.org with your name and phone number. The views and opinions expressed in this program are those of the participants and do not reflect the views or opinions of AHN, its subsidiaries or affiliates. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition.

Melanoma – Online Resources

This resource was originally published by Melanoma International here.

Online Resources

Search by type of resource

Caregiver ResourcesClinical TrialsPrescription Drug AssistanceSupportHospiceHotlines and ForumsInsurance/Financial AssistanceLodgingLymphedemaOther Types of MelanomaPain ManagementRadiationSuggested ReadingSurvivorshipTransportation


Caregiver Resources

Caregiver Action Network

1130 Connecticut Ave, NW
Suite 300
Washington, DC 20036

Phone: (202) 454-3970
www.caregiveraction.org

Caregiver Action Network works to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Family Caregiver Alliance

785 Market Street
Suite 750
San Francisco, CA 94103

(415) 434-3388
(800) 445-8106
www.caregiver.org

FCA seeks to improve the quality of life for caregivers through education, services, research, and advocacy. FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues, and provides assistance in the development of public and private programs for caregivers.

The Caregiver Relief Fund

900 South Wabash Avenue
Suite 603
Chicago, IL 60605

https://caregiverrelieffund.wordpress.com/

A social venture committed to caring for caregivers. Provides resources, assistance and a voice to over 50 million Americans who are currently caregivers to the chronically ill, aged and disabled.

4th Angel

9500 Euclid Avenue R36
Cleveland, OH 44195

(866) 520-3197
www.4thangel.org

The 4th Angel Program is part of the Scott Hamilton CARES Initiative. This is a free, national service which provides a one-to-one supportive relationship (phone or email based) to cancer patients and their caregivers. The program has over 400 patient and caregiver mentors who are at least 6 months post treatment, and continues to train more mentors.

Caregivers4Cancer

P.O.Box 153448
Irving, Texas 75015

(800) 787-2840
(972) 513-0668
Caregivers4cancer.com

Organization strives to educate and assure caregivers and oncology teams there are ways to ease the journey’s relentless demands. Goal is to help caregivers emerge on the other end with less stress, more energy and a feeling of accomplishment that they did all they could for their loved ones.

Caregiver.com

3350 Griffin Road
Fort Lauderdale, FL 33312

954-893-0550
1-800-829-2734
www.caregiver.com

A leading provider of information, support and guidance for family and professional caregivers. Founded in 1995as a producer of Today’s Caregiver magazine, the first national magazine dedicated to caregivers. Caregiver Media Group and all of its products are developed for caregivers, about caregivers and by caregivers.


Clinical Trials

ClinicalTrials.Gov

The National Cancer Institute at the National institute of Health
Bethesda, Maryland

1-800-4-Cancer
www.clinicaltrials.gov

A registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details.

Oncolink

The Perelman Center for Advanced Medicine
3400 Civic Center Blvd
Suite 2338
Philadelphia, PA 19104

215-349-8895
www.oncolink.org

Comprehensive information about specific types of cancer, updates on cancer treatments and news about research advances. Information is updated every day and provided at various levels, from introductory to in-depth.

Dermatology & Early Detection

Center for Disease Control (CDC) Centers for Disease Control and Prevention
4770 Buford Hwy NE
MS K-64
Atlanta, GA 30341

800-232-4636
cdcinfo@cdc.gov
www.cdc.gov

Federal agency that provides information on cancer prevention and control.

American Academy of Dermatology

930 E. Woodfield Road
Schaumburg, IL 60173

1445 New York Avenue, NW, Suite 800
Washington, DC 20005

(866) 503-SKIN (7546)
International: (847) 240-1280
www.aad.org

Founded in 1938. With a membership of more than 17,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists. Find free screening locations as well as information on research, diagnosis and treatment.

DermWeb

The Department of Dermatology and Skin Science
University of British Columbia
835 West 10th Avenue
Vancouver, B.C.
Canada V5Z 4E8

604-875-4747
www.DermWeb.com

DermWeb is a premier destination for dermatology links and resources on the Web. There are several areas of interest for practicing dermatologists, for dermatology students, and for the general public.

The Skin Cancer Foundation

149 Madison Av.
Suite 901
New York, NY 10016

212-725-5176
1-800-754-6490 (1-800-SKIN-490)
www.skincancer.org

Educates about skin cancer and its prevention by means of sun protection; as well as the need for early detection, and prompt, effective treatment. It is the only international organization devoted solely to combating the world’s most common cancer, now occurring at epidemic levels.

National Cancer Institute

6116 Executive Boulevard, Suite 300
Bethesda, MD 20892

1-800-422-6237 (1-800-4-CANCER)
TYY: 1-800-332-8615
www.cancer.gov

The NCI coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.


Prescription Drug Assistance

Needy Meds, Inc.

P.O. Box 219
Gloucester, MA 01931

(800) 503-6897
www.needymeds.org

This service provides information on drugs and offers applications (if available) for financial assistance, coupons for drugs, discount drug cards, free/low cost clinics and government program information.

Together Rx Access Card

One Outlet Lane
Bald Eagle Court
Lock HavenPA 17745

(800) 444-4106
http://www.togetherrxacces.com

Free prescription savings program for qualified enrollees, which provides savings on more than 300 FDA-approved prescription drugs.

Partnership for Prescription Assistance

1-888-4PPA-NOW (1-888-477-2669)
www.pparx.org

This program helps uninsured and financially struggling patients get access to nearly 500 healthcare and prescription assistance programs that offer medicines for free or nearly free.

National Conference of State Legislatures

State Pharmaceutical Assistance Programs
http://www.ncsl.org

More than 30 states have programs that will give discounts on prescription drugs, often for free. Visit web site to learn more about the various programs state legislatures have developed.

RxAssist

111 Brewster Street
Pawtucket, RI 02860

401-729-3284
www.rxassist.org

Patient assistance programs run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles.

RxHope

P.O. Box 42886
Cincinnati, OH 45242

1-877-267-0517
www.RxHope.com

Advocate in making the patient assistance program journey easier and faster by supplying vital information and help.


Support

The Cancer Support Community

1050 17th Street, NW
Suite 500
Washington DC 20036

202-659-9709
cancersupportcommunity.org
help@cancersupportcommunity.org

An international non-profit dedicated to providing support to people affected by cancer. Services are available through a network of professionally led community-based centers, hospitals, community oncology practices and other non-profits, as well as online.

CanCare

Fighting Cancer with Hope
9575 Katy Freeway, Suite 428
Houston, Texas 77024

713-461-0028
1-888-461-0028
www.cancare.org

Cancer survivors of more than 50 different types of cancer volunteer for CanCare to provide emotional support to those currently facing a battle with cancer. Family members of survivors provide emotional support to family members of cancer patients.

Caring Bridge

1715 Yankee Doodle Road
Suite 301
Eagan, MN 55121

651-452-7940
651-681-7115
www.caringbridge.org

Free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.

MyLifeLine.org Cancer Foundation

55 Madison St., Ste. 750
Denver, CO 80206

303-549-0405
www.mylifeline.org
support@mylifeline.org

A 501(c)(3) nonprofit organization that encourages cancer patients and caregivers to create free, customized websites. Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.

CancerCare

275 Seventh Ave. Floor 22
New York, NY 10001

1-800-813-HOPE (4673)
info@cancercare.org
www.Cancercare.org

National Office serves people with cancer and their loved ones throughout the entire 50 states, Puerto Rico, and the U.S. Virgin Islands.

US Dept of Health & Human Services

P.O. Box 1133
Washington, DC 20013-1133

healthfinder.gov
healthfinder@nhic.org

Write to healthfinder.gov at Health and Human Services Department for easy entry point to trustworthy health information.

National Cancer Institute (NCI)

1-800-4-cancer
www.cancer.gov

Very comprehensive information from the US Government agency wing of the National Institute of Health (NIH).

Web MD

A medical education site from a company that helps both consumers and healthcare providers navigate the healthcare community.


Hospice

HFA Hospice Foundation of America

1710 Rhode Island Ave, NW
Suite 400
Washington, DC 20036

National Hospice Foundation

1731 King Street, Suite 200
Alexandria, Virginia 22314

Caring Connections

800-658-8898
Multilingual Line: 877-658-8896


Hotlines and Forums

Melanoma International Foundation

Toll free Patient and Family Helpline: 1-866-463-6663
Forum: Melanoma Forum

Dana Farber Cancer Institute

Family Studies Cancer Risk Line
Voice: 1-800-828-6622
www.dana-farber.org

Information regarding familial cancers

Patient Advocate Foundation

1-800-532-5274 (Mon.-Thurs., 8am-8pm; Fri., 8:30am-7pm EST)
www.patientadvocate.org

Provides education and legal counseling to cancer patients (relative to a diagnosis) concerning managed care, discrimination, insurance and financial issues.

Hereditary Cancer Center

Creighton University School of Medicine
2500 California Plaza
Omaha, NE 68178

1-800-648-8133 (Mon.-Fri., 8am-5pm CST)
http://medschool.creighton.edu/centers/hcc/

Studies family-linked cancer. Counseling, information on clinical trials, cancer and hereditary factors.

Cancer Information Service

Sponsored by National Cancer Institute.
1-800-422-6237
www.cancer.gov

Provides information about cancer and cancer-related resources to patients, the public and health professionals. Offers one-on-one smoking cessation counseling and literature. Free publications.

Skin Cancer Foundation

1-800-754-6490 (Mon.-Fri., 9am-5pm EST)
www.skincancer.org

Provides educational materials and information on skin cancer and treatment.

Cancer Research Institute

1-800-992-2623 (Mon.-Fri., 9am-5pm EST)
www.cancerresearch.org

Provides general cancer resource information. Supports leading-edge research aimed at developing immunologic methods of preventing, treating and curing cancer.

Cancer Information and Counseling Line

1-800-525-3777
(Mon.-Fri., 8:30am-5pm MST)

Provides current medical information and counseling for cancer issues.

Cancer Hope Network

1-877-467-3638 (Mon.-Fri., 9am-5:30pm EST)
www.cancerhopenetwork.org

One-on-one support offered to cancer patients and their families undergoing cancer treatment from trained volunteers who have survived cancer themselves.

BLOCH Cancer Hotline

1-800-433-0464

Networks persons with cancer and home volunteers with same type of cancer. Free books about cancer.


Insurance/Financial Assistance

Good Days

6900 N Dallas Pkwy,
Suite 200
Plano, TX 75024

(877) 968-7233
(972) 608-7141
http://www.mygooddays.org/

Good Days exists to improve the health and quality of life of patients battling chronic disease, cancer or other life-altering conditions who cannot afford the medications they so desperately need.

HealthWell Foundation

P.O. Box 4133
Gaithersburg, MD 20878

800-675-8416
www.healthwellfoundation.org

The HealthWell Foundation® provides full or partial financial assistance to eligible individuals who cannot afford their insurance co-payments, premiums, deductibles for certain treatments, and other out-of-pocket health care expenses.

Medicare & Medicaid

7500 Security Blvd
Baltimore, MD 21244-1850

800-318-2596
www.healthcare.gov/medicaid-chip/

800-MEDICARE
www.medicare.gov

Medicare is a federal system of health insurance for people over 65 years of age, and Medicaid assists low-income individuals and certain younger people with disabilities.

National Patient Advocate Foundation (NPAF)

725 15th St, NW, 10th Floor
Washington, DC 20005

202-347-8009
www.npaf.org

NPAF provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.


Lodging

Joe’s House

505 E 79th Street
New York, NY 10075

877-563-7468
www.joeshouse.org

Joe’s House website lists thousands of places to stay across the country near hospitals and treatments centers that offer a discount for traveling patients and their loved ones.

Healthcare Hospitality Network, Inc.

P.O. Box 1439
Gresham, OR 97030

(800) 542-9730
http://www.hhnetwork.org/

The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities. The mission of HHN is to support homes that help and heal to be more effective in their service to patients and families.

Hope Lodge –American Cancer Society

(800) 227-2345
WEBSITE

Hope Lodge offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Currently, there are 31 Hope Lodge locations throughout the United States. Accommodations and eligibility requirements may vary by location.


Lymphedema

National Lymphedema Network

116 New Montgomery Street, Suite 235
San Francisco, CA 94105

1-800-541-3259
415-908-3681
www.lymphnet.org

A non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema.


Other Types of Melanoma

Mucosal Melanoma

Oral Cancer Foundation
3419 Via Lido #205
Newport Beach, CA 92663

949-723-4400
www.oralcancerfoundation.org

The Oral Cancer Foundation is a non-profit 501 (c) (3) public service charity that provides information, patient support, sponsorship of research and advocacy related to this disease. At the forefront of our agenda is to promote solid awareness in the minds of the American public about the need to undergo an annual oral cancer screening and an outreach to the dental community to provide this service as a matter of routine practice.

Ocular Melanoma Foundation

P.O. Box 29261
Richmond, VA 23242-0261

www.ocularmelanoma.org

OMF aspires to be the top destination for up-to-date OM-related educational information, a meeting place, and advocacy resource. For doctors and researchers, OMF strives to be the connective tissue, facilitating interdisciplinary cancer research.


Pain Management

American Academy of Pain Management

The largest pain management organization in the nation and the only one that embraces an integrative model of care, which is patient-centered, focuses on the “whole” person, is informed by evidence, and brings together, all appropriate therapeutic approaches to reduce pain and achieve optimal health and healing. The Academy offers continuing education, publications, and advocacy.

American Chronic Pain Association

PO Box 850
Rocklin, CA 95677

1-800-533-3231
https://theacpa.org

Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and health care professionals. The information and tools on our site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.


Radiation

RT Answers

American Society of Radiation Oncology
8280 Willow Oaks Corporate Drive, Suite 500
Fairfax, VA

703-502-1550 or 1-800-962-7876
www.rtanswers.org

Web site explains to patients, their families and the public how doctors called radiation oncologists use radiation therapy to treat cancer safely and effectively.

Radiation Therapy Fact Sheet

National Cancer Institute
www.cancer.gov

A fact sheet that defines the different types of radiation therapy and discusses scientific advances that improve the effectiveness of this treatment.