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June 2020 Notable News

It’s officially summer so grab a cup of coffee and soak up some vitamin D because this month we learn that both of those things can help prevent cancer. We also learn about the recall of a popular drug and the approval of some others. In addition, there’s a new blood test to diagnose liver cancer and some tips on how to recognize skin cancer. Finally, research shows that COVID-19 remains a very real threat, especially for cancer patients.

Vitamin D and Coffee Benefits

With so much going on, your vitamin D status may not be on your mind, but you might want to give it some thought, reports sciencedaily.com. It turns out that a good vitamin D status is good for cancer prevention and prognosis, especially for colon and blood cancers like leukemia and lymphoma. Conversely, a low vitamin D status often correlates with higher incidence of cancer and lower survival rates. You can learn more about vitamin D and cancer here.

While you’re out soaking up the vitamin D from the sun’s rays, you might want to bring your favorite cup of coffee because there’s evidence that coffee could reduce the risk of cancer, reports dailycoffeenews.com. The news comes from an update in the diet activity guidelines from the American Cancer Society. It’s not known how or why coffee seems to help prevent several types of cancers, but there’s been a decade of research that supports the claim. In addition to coffee, the American Cancer Society recommends following a healthy diet, limiting alcohol, staying active, and maintaining a healthy weight. Research shows that diet and exercise lifestyle choices are connected to 18 percent of all cancer cases in the United States. Learn more about coffee and cancer here.

Take a Look at Your Skin

All this talk about sun exposure makes it a good time to think about skin cancer. Especially since there’s room for improvement in skin cancer survival rates, says consumerreports.org. Getting to know your own skin could be the key to survival. A Consumer Reports survey found that only 52 percent of Americans have their skin regularly checked by a doctor. There’s debate about whether or not everyone should see a dermatologist every year, but early detection of skin cancer makes a big difference. When skin cancer is found early treatment is relatively non-invasive and early stage melanoma has a 98 percent survival rate. So, whether you see a doctor or not, you should perform monthly skin checks of your own. Get familiar with the moles and marks on your skin and look for any that don’t seem to fit in. If you find something that looks irregular, let your doctor know. Learn more and find examples of what skin cancer looks like here.

Metformin Hydrochloride Recall

While you’re checking your skin, you might also need to check your list of medications. A popular diabetes drug has been recalled due to cancer risk, reports webmd.com. All lots of metformin hydrochloride extended release 500 mg tablets were recalled due to the possibility that they contained high levels of N-Nitrosodimethylamine (NDMA) which is a chemical thought to cause cancer. A test by the United States Food and Drug Administration (FDA) found higher than allowed levels of NDMA in one lot of metformin. Get more information about the recall here.

FDA Expands Indication for Gardasil 9

The FDA has given accelerated approval for the use of a vaccine to prevent head and neck cancers, reports statnews.com. The human papilloma virus (HPV) vaccine, Gardasil 9, is recommended for both males and females ages 9 through 45 to prevent several cancers. However, the vaccine was not previously recommended as prevention for head and neck cancers even though they are commonly caused by HPV in the United States. The hope is that, by including head and neck cancers in the list of cancers the vaccine prevents, it will raise awareness for and help prevent the occurrence of these types of cancers. Find more about Gardasil here.

Good News for Thyroid and Non-Small Cell Lung Cancer

The FDA has also given accelerated approval for a drug to treat thyroid and lung cancer, says cancer.gov. The drug selpercatinib (Retevmo) will treat people with thyroid or non-small cell lung cancer with tumors that have a gene alteration called RET. The drug blocks the RET proteins and was shown to shrink tumors. Selpercatinib has fewer side effects than older RET blocking drugs. Accelerated approval means that, although the drug has not gone through all required levels of testing, it can be approved for use, but testing must continue while the product is on the market. The process is only used for drugs that treat serious or life-threatening diseases without better treatment options. Learn more about the accelerated approval of selpercatinib here.

Combatting Nausea

There’s another drug of note this month giving hope to advanced cancer patients who have nausea and vomiting, says cancer.gov. In a study conducted by the National Cancer Institute the drug olanzapine (Zyprexa) was found to reduce nausea and vomiting in advanced cancer patients. Olanzapine is an antipsychotic medication mainly used to treat bipolar disorder and schizophrenia and has also been used off-label to prevent nausea and vomiting in cancer patients. Learn more here.

Detecting Liver Cancer

The National Cancer Institute was also involved in a study where a blood test has been developed to determine which people are most likely to develop liver cancer, says cancer.gov. The simple blood test is used to check for exposure to certain viruses that lead to the development of hepatocellular carcinoma (HCC) which is the most common form of liver cancer. The test could help lead to early diagnosis and treatment. Most patients with HCC are diagnosed when the cancer is advanced and incurable, but when caught early the prognosis is much better. With HCC on the rise in the US, a test that could help with early detection is welcome news. Learn more about the testing here.

COVID-19 Update

The not-so-welcome news continues about the novel coronavirus. There are some new studies that emphasize the danger of the coronavirus for cancer patients, reports apnews.com. The studies showed that current and former cancer patients who developed COVID-19 were more likely to die within a month than people without cancer. One study showed that 13 percent of cancer patients with COVID-19 died. Another study found the death rate to be 28 percent. The studies are a reminder of how critical it is for cancer patients to do all they can to follow safety guidelines so they can avoid contracting the virus. Find out more here.

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals.  We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life from Patient Empowerment Network on Vimeo.

After Diana’s cancer diagnosis, she was told that she had only months to live. But, after meeting fellow head and neck cancer patient Sajjad Iqbal online, Diana’s path changed dramatically and she is now cancer-free. Hear their inspiring story about the power of connecting with other patients.


Transcript:

Sajjad:                        

My name is Sajjad Iqbal. I am a physician and also a cancer patient. I have the honor of serving on the board of Patient Empowerment Network.

Diana:                         

I’m Diana Craig from Auckland, New Zealand.

Sajjad:                        

I was diagnosed with a gland cancer, which is a salivary gland, on the left side of the face. The actual histology was a salivary duct carcinoma. It was diagnosed in February of 2002.

Diana:                         

In January of 2018. I was diagnosed with squamous cell carcinoma HPV 16 on my tonsil and soft palate.

Sajjad:                        

I do a lot of counseling for the cancer patients and mentoring and advocating and all that. And as a part of that, I have joined a head and neck cancer support group, which is based in New Zealand. It’s on Facebook. And there are some great people there who advise together cancer patients. Diana posted a cry for help back in May of this year, May of 2019, where she was just given the news that her cancer had recurred in her lungs and near her trachea. And her oncologist gave her a very grim prognosis and he thought that the medication had a very small chance of success.  

And he told Diana she had a few months to two years to live. Diana was devastated. She posted on that Facebook group, and I reached out to her to introduce myself, to tell her how I have managed my own cancer, and I told her that I could try to help her if she would be willing to share the information with me.

Diana:                         

Initially, I hadn’t heard of him before.

And I felt I needed to do some research, and I was told by everybody what a good guy he is, and to absolutely go down that road. So, I happily gave my information and certainly after the first conversation or interaction with him, I knew I was in good hands. Very much so. It was, to me, I used to call him my angel, my guardian angel, because I really felt safe and informed and encouraged. And his mantrais hope and determination and that is such a valid mantra when you go through cancer.

And it’s something that I said to myself oftentimes because it was so poignant, and it’s everything that you have to be and do to empower yourself and to be proactive, to find the best possible outcome for yourself.

Sajjad:                        

You know, as you know, I have written a book about my amazing cancer journey. The book is called Swimming Upstream. And a lot of other people have found it very inspirational. So, my story was not a whole lot different from Diana in this respect: that I was given a very grim prognosis back in 2002.

I was told that I had less than 30% chance of surviving for two years and I was also told that there was no five-year survivors with this cancer. And I made it my goal to beat the odds. And I used to say that in that case, I’ll be among the 30% and if no one has survived five years, well, I’ll be the first one. So, the hope and determination that Diana just mentioned, that’s my motto. Hope and determination. And I tried to instill that in Diana.

Diana: 

It certainly empowered me or put me in the right direction as to, I mean, I like to be moving, I like to be able to fight the fight if I know where to fight to. And also, know what questions to ask. I mean, when you’re in that situation, you are told how it is. And you don’t know what you don’t know. And unless you’ve been informed by somebody else or do the research yourself, and even then, that’s pretty dubious, because you stumble across information that you don’t want to know, and a lot of it’s scare tactics. But with his knowledge, with his background, with his first-hand experience of going through what we have gone through, gave me the confidence to do everything that he said.

Sajjad:                        

And I always recommend to my friends, other patients, that going to your oncologist about the cancer treatment is so much different than going to a doctor for your blood pressure or your bronchitis or so on.

This is an area where we need to be fully prepared. We need to go in and have a dialogue with our doctors who are treating our cancer and this is a matter of life and death. Literally, life and death. So, there is no room for just sitting there passively and just listening to everything and agreeing to everything. We must ask a lot of questions to our doctor. They should be, not only willing to answer our questions, but they should be welcoming our questions. So, if a doctor does not welcome your questions, does not give you plenty of time, does not explain everything that he or she wants to do, then that’s not the right doctor for you. And you’ve got to move on, and quickly.

Diana:                         

Where would I be without meeting Sajjad? I would have no hair at this point. I would be in the middle of chemo and probably K-truda. I don’t believe that I would have such a radical improvement so quickly. Because mine had gone after three infusions, which is nine weeks. So, I floundered the first time because I felt like I needed the help and I couldn’t get any. And the last time, I felt so much more in control, and anybody would think I’m a control freak. And let me tell you, I’m not. At all.

And also, being on my own, as well, I didn’t have a partner there to talk to. It was heaven-sent. And I said to him, “If I come out okay, I’m going to come and see you.” And here I am. Coming to see you. Because it meant so much to me. It really meant so much to me. It really did.

Sajjad:

Yes, it did.

The medical science is moving at an astonishing pace to find new medicine, new modalities, to treat cancer. We cannot be  – the patient must not get bogged down in the statistics of, oh you have this percent chance of survival, or this percent chance of death. Because those numbers don’t mean anything anymore. They’re old numbers. And to fight the cancer, we need our immune system to be involved in the fight.

If we get depressed, if we lose all the hope, the immune system shuts itself down, and that helps the cancer. So, number one thing is to always have hope. Always remain optimistic. And number two is determination. You determine that you are going to fight this and you are going to survive. And then, having those two tools at your disposal, become the empowered patient. Learn as much as you can about your cancer. Talk to other people, go to the support groups. And, again, let me plug Patient Empowerment Network. Go to our website, learn about the cancer. Then go to your doctor and question them and find out how you can improve your treatment. And that’s the way you fight cancer.

Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery

The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD). [1] The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.

Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients.[2] The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.

And what of those for whom treatment doesn’t end?  Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” [3]

Could You Have Cancer-Related PTSD?

The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts.  These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).

A number of risk factors may make you more vulnerable to PTSD.   Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors.  On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.

Signs and Symptoms of PTSD

Symptoms of PTSD can arise suddenly, gradually, or come and go over time.  Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.

There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.

  • Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
  • Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
  • Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).

8 Key Strategies and Tips for Recovery

 

1. Acknowledge and accept your feelings

Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember,  there is no right or wrong way to think, feel, or respond to cancer.  Be compassionate to yourself and patient with the pace of recovery.  Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.

2. Avoid obsessive thinking

While it’s  important not to ignore your feelings, obsessively dwelling on them will slow the healing process down.  One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.

3. Reduce your stress

Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.

4. Take regular exercise

Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals.  It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.

5. Eat a healthy diet

A healthy body increases your ability to cope with stress from a trauma.  Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.

6. Get plenty of sleep

Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.

7. Pay attention to triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken memories and feelings. Plan ahead for those times.

8. Connect with others

Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey.  Look to cancer support groups in your area or search online for groups.   Talking to a psycho-oncologist or counsellor can also help.

When to Seek Help

It’s normal to feel anxious and unsettled after a traumatic event such as cancer.  A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening.  Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.

If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your  personal relationships, employment, or other important areas of daily life,  it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome.  Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment,[4] so it may be up to you to advocate for your own assessment.

Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.

You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.

Conclusion

A trauma like cancer shatters our sense of security,  making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control.  It can take time to get over the trauma and feel safe again.  But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.


[1] The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.

[2]  The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.

[3] No Half Measures. “The Violence of Cancer” https://nohalfmeasures.blog/2020/01/09/the-violence-of-cancer/

[4] Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.

Let’s Start Healthy Habits to Reduce Your Cancer Risk

Living a healthy lifestyle can be very helpful in reducing your risk of contracting various diseases, including heart diseases, osteoporosis, stroke, and diabetes.  You might not believe it, but just by eating healthy, exercising regularly, and incorporating healthy eating habits, you can reduce the risk of one of the most dreadful diseases, cancer.

Nowadays, cancer has become quite common. Studies have shown that our lifestyle choices play a vital role in reducing your risk for this dreadful disease. Here are some simple tips that can be very helpful in cancer risk reduction.

Cancer Risk Reduction:

1. Maintain a Healthy Weight

We all understand the importance of maintaining a healthy weight. Still, many of us fail to maintain our body weight. If you are overweight, the first and foremost thing that you need to do is avoid adding any more extra kilos. Once you start keeping a check on your weight, it would automatically help in improving your health. Once you achieve this goal, put some extra effort and try to reduce your weight by a few pounds.

Tips for weight loss:

  • Do regular exercise or indulge yourself in physical activity.
  • Focus more on eating fresh fruits and vegetables.
  • Avoid taking fried food, canned food, and sweetened aerated drinks

For faster results, you can even take phentermine. Phentermine is found to be very useful in weight loss when accompanied by regular physical activity and a healthy diet. The best part of this supplement is the availability of “online phentermine prescription

2. Don’t use tobacco

We all are well aware of the ill-effects of smoking. Smoking may result in various kinds of cancer like lung cancer, bladder cancer, cervix cancer, mouth cancer, pancreas cancer, larynx cancer, kidney, and bladder cancer. It’s not only active smokers that have higher chances of getting cancer. Passive smokers, too, have higher chances of getting cancer of lungs.

Hence, avoiding tobacco products or quitting smoking completely is very important if you want to reduce your risk of cancer. Quitting such addictions is not easy. But with determination, strong will power, and support of your family and loved ones, you will be able to quit it. If you want, you can seek help from professionals.

3. Protect yourself from the sun

We all know the importance of sunlight for sustaining life on earth. But, too much exposure to the sunlight may cause skin cancer. Tips to protect yourself from skin cancer caused due to sunlight:

Sun rays are strongest between morning 10 to evening 4. So avoid going out at this time of the day. Try to keep yourself in the shade when you are outside. Wearing hats, glares, and applying sunscreen lotion can be very helpful. Avoid using sun lamps and tanning beds.

4. Cancers that should be tested for regularly:

Going for regular check-ups is very important if you want to reduce your risk of cancer. Numerous tests help in detecting cancer at an early stage. Early the stage of detection higher is the chances of survival. In the case of breast and cervical cancer, women are recommended to go for cancer screening tests at an interval of six months. These simple screening could save thousands of women’s lives every year.

Cancers for which screening test should be taken frequently:

  1. Breast cancer
  2. Cervical cancer
  3. Lung cancer

5. Avoid alcohol and if you take it, take it in moderation

Drinking alcohol increases the chances of getting cancer. Taking a drink or two occasionally might not be that harmful, but people who drink regularly that too in quite large quantities should try to overcome this addiction. If you want to quit drinking, you can start by avoiding parties and gatherings which are centered around alcohol. Try taking non-alcoholic drinks at parties. If needed, consult a health-care professional. Avoiding alcohol would not only save your liver but would also reduce the chances of getting liver cancer.

6. Avoid risky behaviors

Another essential health tip that would help you in reducing your risk of cancer is to avoid getting indulge in dangerous habits.

Practice safe sex:

Sexually transmitted diseases are found to be a major cause for various types of cancer, including cancer of lung, anus, and liver. Always follow healthy sexual habits. Try to have a monogamous relationship. Whenever possible, talk to your kids about the importance of safe sex. If possible, get your kids vaccinated against HPV at the right age.

Avoid sharing needles:

Sharing needles is another reason for the transmission of HIV. Besides this, sharing needles with a person having Hepatitis C and Hepatitis B would result in the transfer of these diseases, which may further increase the chances of having liver cancer. If you are looking forward to getting rid of drug addiction, taking help from a professional could be very beneficial.

Cancer is a very dangerous disease. It not only affects the patient, but it hampers the life of the people surrounding who are connected with the patient. If, by following some healthy habits, we can reduce the risk of these diseases, believe me, it is worth every effort. Eat healthily and live a healthy lifestyle and reduce your risk of the health monster named Cancer from entering into your life.

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Cancer is a stealthy assailant. Symptoms can be nonexistent or masquerade as some other ailment. When a medical professional utters the “C” word, the shock can be intense.

“I had no idea,” said Lindsay Hutchings of the softball-sized tumor that had been growing in her chest behind her breastbone. “I just knew I didn’t feel right.”

Lindsay was 34 at the time of her diagnosis. A mother of two young children, she never suspected cancer when she started feeling unwell. It was October. Time for picking Halloween costumes and the season when colds spread like wildfire through schools.  A mom with young kids feeling fatigued and achy was nothing to be alarmed about.

Lindsay went to a walk-in clinic. When she didn’t improve, she went to her primary care doctor. She was given antibiotics. She was tested for the flu and then mono. Allergies were blamed and antihistamines suggested. Every week she was back in either the walk-in clinic or her primary care doctor’s office.  Until one morning she woke up with a swollen neck and jaw.  She knew this was not just a stubborn cold. She knew it wasn’t allergies.

“This time I was diagnosed with a sinus infection and referred to an Ear, Nose & Throat (ENT) physician. It was frustrating because I knew it wasn’t a sinus infection. I just didn’t have any idea what it could be.”

By this point, Lindsay’s husband, Jake, was going to appointments with her in hopes he might think of some question or detail she had missed. The ENT doctor examined Lindsay and listened to the path that had brought her and her husband to see him. He scoped Lindsay’s sinuses and found nothing.

Then he ordered a CAT scan and posed the possibility that Lindsay’s symptoms might not be related to a virus, allergy, or superbug. It might be cancer.

She was told to expect to wait three weeks for the results of her CAT scan because of the Christmas and New Year’s holidays, but the ENT called her after a few days with the results.  He suspected lymphoma and referred her to an oncologist.

Lindsay started the New Year off by having two biopsies and a PET scan to confirm what the ENT had suspected.  Four months after she first began feeling off, Lindsay had an answer. It was Stage IIB Hodgkin Lymphoma.

About Hodgkin Lymphoma

Cancers that start in white blood cells—also called lymphocytes–are categorized as lymphomas. The two main types of lymphomas are Non-Hodgkin Lymphoma and Hodgkin Lymphoma. Hodgkin Lymphoma (HL) can start in any lymphoid tissue in the body, such as the spleen, bone marrow, thymus, adenoids or tonsils. However, it most often starts in lymph nodes in the upper part of the body. Lymph nodes are bean-sized collections of lymphocytes and other immune system cells and are located throughout the body.

The causes and triggers for HL are unknown. Children and adults can develop Hodgkin Lymphoma. The average age at the time of diagnosis is 39. Although there is a higher rate of lymphomas in people with immune disorders, there is usually no known risk factor or cause for people diagnosed with HL.

There are four subtypes of classic HL and a rarer form of HL called nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). Treatment for the disease varies depending on what type the patient has, what stage the disease is in (I, II, III, or IV), and whether certain other symptoms are present (called B symptoms).

Cancer’s Emotional Side Effects: Shock, Optimism & Guilt

From the first mention of lymphoma by the ENT physician Lindsay began researching the disease online. She went to her first post-diagnosis oncology appointment armed with questions. Her oncologist patiently answered her questions and laid out a treatment plan he felt confident was the right one. He explained the survival rates were high and the rates of recurrence of HL were low. He assured Lindsay and Jake her prognosis was good.

“I was in shock. I had no idea what I was doing but he was responsive and reassuring. I would call or email my oncologist between appointments with questions and he always responded. It really helped me be positive and more confident,” Lindsay explained.

She needed that positive confidence to help with the first challenge that followed on the heels or her diagnosis. She and Jake had to sit down with their daughters—who were just four and seven—to explain their mommy had cancer and what that meant for their family.

Lindsay’s mother had passed away from lung cancer just two years prior.  It was hard for seven-year-old Delaney to understand that this cancer was different from her grandmother’s.  She became anxious after the effects of treatment began taking their toll that Lindsay might die just as her grandmother had.

Her younger daughter had a hard time distinguishing the kind of sick her mommy was from the everyday illnesses she and her friends might have.

And of course, once treatment began, there was a lot Lindsay couldn’t do for her children anymore. Some days she couldn’t get out of bed. Often Lindsay was unable to take them to school or help with homework. She stopped volunteering at their schools. A low point for their family came early in Lindsey’s treatment when Delaney came home from school sick Lindsay had to avoid being near her. Meanwhile, her husband worked from home as much as he could or took time off to care for Lindsay and their daughters.

Lindsay admits, “I still feel guilt for the burden I put on my family.”

The Cancer Journey Continues

Lindsay’s cancer was treated with chemotherapy and radiation. There were side effects, of course:  exhaustion, chemobrain, nausea, constipation, blood clots.  She had to get daily shots of blood thinners in the doctor’s office, which brought other risks and complications. There were moments of panic when it seemed the tumor had stopped responding and additional biopsies followed.  But in the end, nearly a year after Lindsay first began experiencing symptoms, she was declared cancer-free.

There is a sense of victory from beating cancer. But like many other cancer survivors, Lindsay can’t say her cancer journey has truly concluded.

“At this point I am cancer-free, but I’m paranoid. It [the tumor] got so big without me knowing! I feel like some part of me will always worry.”

Ten to 30 percent of HL patients experience recurrence of the disease, with recurrence being lowest for those who are treated in the early stages of the disease. However, rates of developing a second cancer are higher for HL survivors than the general public regardless of whether the lymphoma returns.

Lindsay will have quarterly follow-up visits and two scans this year to screen for recurrence. As long as her results remain normal, she can scale back to annual screenings the following year. However, because she’s now at higher risks for other medical issues, she needs annual screenings by a cardiologist and pulmonologist. She will have annual mammograms now, instead of waiting until age 40 or 45. She has a roster of doctors at a time of life when many of her peers are in peak health.

The upside, Lindsay says, is that if any of her friends or family ever need a recommendation for a specialist in town, she has her list ready!

In addition to the health concerns she will carry, Lindsay also continues to deal with fatigue. Fortunately, while undergoing treatment Lindsay was able to connect with, Brittany, a two-time survivor of Hodgkin Lymphoma.  Brittany used to teach at Delaney’s school and when she heard about Lindsay’s diagnosis, she tracked down her phone number from a friend because she knew from experience how helpful it is to hear perspective and encouragement from someone who has been there before.

“When I went to my appointments, I was usually the youngest person in the office by decades,” Lindsay explained. Talking to someone closer to her own age has helped.

In addition to finding a connection with a fellow survivor, Lindsay is also grateful for the support she and her family received from friends and family in their community. During her treatment, Jake and Lindsay’s family helped as they could.  But there was also an outpouring of support from friends and acquaintances who helped with meals, gift cards, and donating to a GoFundMe account for the family.

“If I could give one piece of advice,” Lindsay says, “it would be to build your community. If we didn’t have friends and family to help get us through, I don’t know what we would’ve done. You can’t be involved in your community or volunteer or even go to church when you are sick. But I am so grateful that we were involved and active before the diagnosis.”

At a time when she saw few people and did very little outside of her home, she felt buoyed by the care and concern of from relationships she’d established before her illness. So, along with the guilt and worry she may carry forward from her cancer journey, she will also carry an abiding appreciation for the value of a supportive community.

Life for the Hutchings family is gradually settling back into normalcy, with family vacations and school schedules supplanting doctors’ appointments and treatments. Lindsay can begin to enjoy her new mantle of ‘cancer survivor’ with increasing confidence. But rather than consign the experience to something that “happened” to her, she is sharing what’s she learned from the experience. She would not claim to be an expert in cancer and its treatment options. But she does advocate for the power of building relationships and positive thinking. These are lessons that can help others whether they are confronting cancer or any other life-altering ordeal.

Three Night Time Activities To Help Cancer Patients Fall Asleep Quickly

Battling cancer is, undoubtedly, tough. On any given day, you might find yourself feeling so sick that you can’t even get out of bed. Being relegated to bed and struggling to even fall asleep can feel utterly disheartening. Adopting some healthy habits in your sleep routine can help to ease your body and mind into sleep more quickly and easily, letting you get some much needed rest and recharge.

Why Does Cancer Alter Your Sleep?

There are a lot of side-effects that you might experience as a result of your cancer treatment. Though one of the most common side-effects is fatigue, many patients also find that they have difficulty sleeping, which only exacerbates their feeling of  fatigue and sleep-deprivation. These sleeping problems can be the result of many factors such as newly developed sleep disorders, physical triggers, and psychological triggers.

Sleep Disorders

It is incredibly common for cancer patients to experience insomnia, which refers to any number of factors that make it difficult for someone to fall asleep and/or stay asleep. People with a serious illness are at an increased risk for insomnia. In fact, while about 20% to 30% of the healthy population suffers insomnia, over half of all cancer patients have reported facing periods of insomnia.

To be clear, insomnia is not caused by cancer, but it is a precipitating issue that results from the physical and emotional stress that often accompanies a cancer diagnosis.

Other sleep disorders may also manifest, such as sleep apnea, hypersomnia, circadian rhythm disorders, parasomnia, and restless leg syndrome. All of these make it difficult for sufferers to fall asleep and sleep soundly through the night, therefore deteriorating sleep quality and causing daytime fatigue and exhaustion.

Physical Triggers

Cancer can cause a great deal of pain and discomfort, which makes it understandably difficult to fall asleep as well. Tumors and treatments alike may result in troublesome pressure in isolated spots on the body or all throughout, as well as gastrointestinal issues, breathing problems, fevers and itching, to name just a few physical symptoms. When your body is uncomfortable, it is incredibly difficult to relax and lull yourself into restful sleep.

Psychological Triggers

Additionally, cancer comes with its fair share of life changes and psychological stressors. Fear and anxiety related to your diagnosis and prognosis alone can be enough to keep you up at night.

Following your diagnosis, you might also experience career, relationship, and body image changes which cause additional stress. We understand that cancer can be a distressing experience, and many patients are at an increased risk for anxiety and depression.

If you are experiencing any troublesome side-effects, whether they are related to your sleep pattern, your physical well-being, or your mental health, it is important to consult your oncologist and other medical professionals for their advice and assistance in easing your symptoms.

How Having A Routine Makes It Easier To Fall Asleep And Sleep Well

For the sake of your health and quality of life, sleep is perhaps the most important thing you can do for yourself. A good night’s sleep can increase productivity, improve mood, and expedite the body’s natural healing processes. This is a vital part of everyone’s life, not just those who are battling illness—still, up to half of all Americans report not getting enough high-quality sleep each night.

If you are kept up by physical pain or emotional stress, implementing a bedtime routine that works to calm your mind and body in preparation for sleep might be the change that you need. Your routine does not have to be overly complicated, especially if you don’t have a whole lot of time or energy in the evening, but a few moments of intentionality before bed can work wonders for your sleep quality and relieve daytime fatigue and sleepiness.

1) Take A Bath

We all like to be warm and cozy in bed at night (hello, fuzzy blankets!) but it is actually really important for your core body temperature to be fairly cool in order to induce sleep effectively. Our bodies follow circadian rhythms which dictate when to sleep and when to wake up. At night, your body naturally cools down and begins to release melatonin and other sleep hormones. Taking a bath or warm shower before bed can have several positive benefits to your sleep, not the least of which being a reduction in your core body temperature.

It may seem counterintuitive that soaking in hot water helps to cool you down, but when you get out of the tub the water begins to evaporate from your skin, cooling your core and cuing your circadian rhythm to do its thing. Baths also improve circulation, ease aches and pains, and help you relax and disconnect before bed.

If you decide to implement a bath or shower into your bedtime routine, go ahead and make it a real treat for yourself. Even just fifteen minutes of uninterrupted relaxation time can have major benefits. Light a calming candle or turn on soothing music, allow yourself to let go of any stressful thoughts or to dos and just breathe. We recommend bathing about one to two hours before bed so that your body has enough time to fully cool down and reap all the cleansing rewards of your pre-slumber soak.

2) Stretch

Practicing some simple yoga stretches before bed can also help sooth your mind and body before bed. In fact, exercising regularly has been seen to have major benefits on sleep quality. Even if you are someone who abhors spending time in the gym or for whom running is a form of torture, you can get in touch with your body and improve your sleep with just a few gentle stretches or a basic yoga practice before bed.

Getting your body moving releases endorphins and enhances mental clarity. If you plan on participating in a workout where you break a bit more of a sweat, we recommend scheduling that earlier in the day so your body isn’t too warm or wired before bed. Stretching and breathing exercises, however, have the same positive benefits and can be done right before bed as they help to relax your mind and body.

Not only does yoga loosen up your muscles and help to relieve pain, it also encourages mindfulness and developing a trust in one’s own body. After a cancer diagnosis, it can be difficult to have faith in your body’s ability to keep you healthy. When you practice yoga, however, the process allows you to see your strength and flexibility improve over time. You will be amazed by what your body is able to do!

Getting in touch with your mind and body through a yoga practice or stretching routine has also been seen to have positive spiritual benefits for practitioners. No matter what your spiritual discipline is, taking time out of your day to clear your mind and ground your body can be enlightening and spiritually encouraging. Use the time that you are stretching to engage in prayer, meditation, or simply focus on controlling your breathing.

3) Keep A Journal 

Do you find that as soon as your head hits your pillow it begins swirling with all of your unfinished tasks and worries? You are not alone! Writing in a journal each night before bed can help to ease your mind and stave off stress and anxiety that commonly keeps you up at night.

What you decide to write is up to you. You can jot down a recount of what you did throughout the day, or make a plan for what you intend on doing the following day. Perhaps you have a mantra of aspiration phrase that encourages you? Try writing this down each night or compose a list of things that you are grateful for or proud of from each day. If you are struggling with day time fatigue, using your journal as a place to record your daily fatigue level (on a scale of 1-10) and the activities that you participated in throughout the day can be useful for figuring out your fatigue triggers and working to manage your energy efficiently.

Ultimately, having a place to clear your head and process your thoughts is a great addition to any bedtime routine. It does not have to take a whole lot of time, nor does it have to follow any sort of structure. This journal should be for you and you alone, so don’t overthink it, just get to jotting (and then get to snoozing!)

Wrapping Up 

Ultimately, changing your routine can create a sense of regularity and control, helping to ease your mind and body into sleep. Routine changes, however, are no substitute for medical care and a strong support system. So, if you are having trouble sleeping, do not hesitate to mention it to your doctor as this might be a symptom of a larger problem.

Notable News: December 2019

While 2019 is nearing its end, there are all kinds of new beginnings in cancer research. Scientists are finding new and exciting discoveries that could lead to fine-tuned cancer treatments specific to each person, each type of cancer, and each response the body has to treatment. Using tropical flowers, mitochondria, and an off switch for cells, researchers keep finding new paths to treatment for even the most difficult and deadly cancers. Of course, that doesn’t mean we need to forget about prevention; there continues to be new information about how our lifestyles could affect our cancer risk, right down to our hair color.

A trip to the hair salon might mean an increased cancer risk, reports ecowatch.com. A study by the National Institutes of Health shows that permanent hair dyes and chemical hair straighteners might put women at an increased risk for cancer. The study found that women who used permanent hair color were nine percent more likely to get breast cancer. Black women, though less likely to use hair dye, had the most notable risk. They showed a 45 percent higher risk of developing breast cancer. Women who used hair straighteners had an 18 percent higher risk of breast cancer. Frequency of use posed a problem, too. Hair products can contain more than 5,000 chemicals, including formaldehyde, which is a known carcinogen. This study’s findings aren’t enough to draw a definitive link between the hair products and breast cancer, and no warnings have been issued about using hair products, but the findings do indicate that more research needs to be done to determine whether or not there is a connection. Read more about this study here.

Wouldn’t it be great if you could just switch off a cell to prevent tumors from growing and spreading? It might be possible, reports medicalxpress.com. Researchers have discovered what could be a new cancer immunotherapy treatment for patients who haven’t responded to other types of immunotherapy. The study, done on mice, shows that many tumors display the molecule MR1, which keeps the body from fighting the cancer cells. Researchers found that when they gave the mice an antibody that blocked the MR1 cell, cancer fighting cells could come in to slow cancer growth and prevent it from spreading. With this new information, doctors would be able to screen patients to see if they have the MR1 cell, and determine if they would respond to the potential new immunotherapy. Researchers now want to apply what they’ve learned to human tumors. You can learn more about the findings here.

Another treatment-related discovery is that there might be an alarm at the molecular level that serves as an alert when cancers have become resistant to treatment, reports sciencedaily.com. Mitochondria, which are present in most cells, can sense DNA stress which can indicate when cancer cells have developed resistance to chemotherapy, researchers found. The findings could lead to new cancer treatments that would prevent chemotherapy resistance, making it more effective. See the details about this discovery here.

Also from sciencedaily.com, we’ve learned that a tropical flower might hold the answer to treating pancreatic cancer. The plant, Uvaria Grandiflora, grows in Malaysia, Indonesia, Thailand, and the Philippines, and its flower contains a chemical that researchers have used as a model to create three new molecules which they hope could treat pancreatic cancer. All three of the molecules have shown that they kill pancreatic cancer cells in a Petri dish, and while the potential drug trials are more than five years away, these molecules could become new drugs for treating pancreatic cancer that would be more effective and less toxic than current treatments. You can find more information here.

As you say goodbye to 2019, we hope you will continue to say hello to Patient Empowerment Network. We will continue to provide you the latest in cancer research news as we continue in our mission to empower patients, family members, and caregivers in innovative ways. We’re particularly proud of our digital sherpa™ program, which you can learn more about at voice.ons.org. Learn how the sherpas are used to enhance the experience of patients and nurses as told by Regina White, RN, MS, OCN at Moffitt Cancer Center in Tampa, Florida. Check it out here.

Happy, Healthy, New Year to all!

Can Diet and Exercise Reduce MPN Symptoms?

Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo

What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

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Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Ryan:

So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.

And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.

So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.

We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.

Dr. Huberty:

So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.

It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.

Dr. Huberty:                

So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.

So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.

Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.

Expert Tips for Managing MPN-Related Anxiety

Expert Tips for Managing MPN-Related Anxiety from Patient Empowerment Network on Vimeo

Health-related anxiety and worry can be overwhelming. Dr. Jennifer Huberty provides advice for using complementary approaches to cope with the emotional impact of a chronic cancer, like myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Improving Life with MPNs: The Latest Research and How to Get Involved


Transcript:

Dr. Jennifer Huberty: 

With anxiety and worry – it’s like we get in this state of mind that we can’t seem to get out of, and then, thoughts just keep piling in and piling in and adding to more anxiousness and more anxiousness, and so, the key is quieting the mind, and the best way to do that is to focus on your breath, and again, just coming back to the moment, coming back to the moment. You can do body scans where you’re just thinking about where your body is in space, going from the tips of your toes all the way to the top of your head.

I recommend guided meditation for MPN patients, especially because it is difficult. The anxiety and worry is real. The fears are real. This is a – it’s a traumatic event to be diagnosed with any cancer, and the brain is a powerful thing in terms of getting in our way of healing and feeling better, and so, knowing that it’s powerful, we can quiet our mind so that our body can learn to let go. And, I will say that spending that time doing that with the anxiety and worry, there will be physiological symptoms that change – so, heart rate goes down, blood pressure goes down, sweaty palms decrease, stomachaches – those kinds of things will tend to go away as anxiety and worry goes down.

And, the other important thing I would say is a tip for managing is to be self-compassionate. So, that’s a big part of meditation and yoga philosophy, is self-compassion. And so….being okay with being anxious and being okay with being worried, and there’s nothing wrong with that, and it’s completely normal.

And so, learning to be compassionate in ways that you would be compassionate to a sibling, or a parent, or a best friend – use those same compassionate thoughts and feelings toward yourself.

Improving Life with MPNs: The Latest Research and How to Get Involved

Improving Life with MPNs: The Latest Research and How to Get Involved from Patient Empowerment Network on Vimeo

Can yoga and meditation help improve life with an MPN? Researchers Dr. Jennifer Huberty and Ryan Eckert share what they’ve learned in their research in complementary medicine and how you can get involved.

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms?

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN-Related Anxiety


Transcript:

Dr. Huberty:

My name is Jennifer Huberty. I’m an associate professor at Arizona State University in the college of health solutions, and I’m preliminarily a researcher.

I do teach a course a year, but I do research, mostly using complementary approaches delivered digitally, and I focus on cancer patients and also middle-aged pregnancy age lifespan, if you will, of women. So, women’s health and cancer.

Ryan:

My name is Ryan Eckert, and I’m a research coordinator with the Mays Cancer Center, which is at University of Texas Health in San Antonio.

So, in regards to what I’m excited about with the research that we have ongoing, I’m excited about the potential to help improve MPNs’ just quality of life and their well-being in general.

It’s a pretty under-studied area, especially as it relates to MPNs specifically, so there’s been a lot of work over the past couple decades as it relates to pharmacologic and more medicine-derived approaches with MPN patients, and we’re just now kind of realizing that there’s a little bit of a gap in some of the research that we’ve been doing, and there’s some unmet symptom burden needs and quality of life needs among MPN patients, and me, my background is more so in exercise science, and so, I’m all about the complementary approaches and the physical activity-based approaches.

And so, it’s pretty exciting for me to see the field of just cancer research in general, but also the research as it relates to MPN, start to evolve more towards the complementary and alternative approach route as it relates to mindfulness, meditation, yoga, and other physical activity interventions.

Dr. Huberty:

In relation to what I’m excited about with MPN research, I could say ditto to exactly what Ryan just said because he said it very well, and I feel strongly the same, and my background is in exercise physiology, and I’ve been working – helping women and cancer patients adopt physical activity behaviors. But, yoga is a physical activity behavior, but it has this really cool mindfulness component.

And, meditation has this mindfulness component where it’s exciting to see that we can be educating and providing MPN patients with a way to manage their symptoms themselves and rely a little bit less on their physicians in terms of “I’m feeling really anxious. What can I do?” If you’re feeling anxious, we’re giving them the tools that they can use to work on the anxiety themselves.

So, quieting their mind, allowing them to understand that it’s okay to feel anxious, and there’s nothing wrong with them, and if they’re having fears, that that’s normal, and that inviting those feelings and emotions in and just quieting their minds through yoga or meditation is so powerful. And so, I’m really excited about the fact that we’re giving them a tool that’s not just “Here’s a pamphlet, here’s what you should do,” we’re actually providing them an opportunity to practice it, to do it safely in their homes, and we’re also giving them a resource that’s consumer-based.

So, all of our interventions – the yoga and the meditation that we’ve been working on – have been with partners. So, our yoga partner is Udaya.com then, Calm.com, which is the meditation app. And so, these are things that we might provide for patients for free during the study, but when the eight-week or 12-week study is over, typically, any patient, any participant wouldn’t have access to the intervention anymore, but here we are with a consumer-based product that’s available to them.

So, we’ve taught them how to use it, we’ve made them comfortable, we’ve helped them to see that they can see improvements in the way that they feel, and then they have the ability to continue to use this as needed. Symptoms are gonna change over time – less anxious, more anxious, less fatigue, more fatigue, those kinds of things – and this helps them with the ups and downs of symptoms. So, I’m super excited about offering something to the patients that can be a lifelong friend, if you will.

Ryan:

So the MPN quality of life study group is a little bit of an acronym for the myeloproliferative neoplasm quality of life study group, and so, Dr. Mesa has obviously been working in this field of MPN research for decades now, and he had what he used to call the MPN quality of life international study group, and that was basically just a variety of different researchers from the U.S., and also abroad internationally.

Based in the U.S., we have a range of different physicians and researchers across four or five different institutions, and we all tend to focus on very similar research involving MPNs or other blood-related cancers. And so, the MPN quality of life study group is essentially just a collection of those – I think it’s somewhere between 10 and 12 different physicians and researchers that do similar research.

So, in order for patients to find out more about the MPN quality of life study group, they can – so, we do have a website that we just created a little less than a year ago, and it’s just www.mpnqol.com, and if they go there, we just have some information related to what our mission as a group is. We also have a tab on that website that explains all the different researchers and positions that make up the group.

So, if you were interested in, say, a particular researcher or physician, there’s links in there to go to their professional websites, and then, there’s also links within the tab of that website that covers some of the ongoing studies that we have. So, patients can go there, click on that link, and fill out an eligibility survey for a study that they might be interested in, and then, the project coordinator or research assistant will be in touch with them related to their eligibility

Cancer Awareness Calendar 2020

January

Cervical Cancer Awareness Month

Blood Donor Month


February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2020)

National Donor Day (February 14, 2020)

Rare Disease Day (February 29, 2020)


March

Colorectal Cancer Awareness Month

International Women’s Day (March 8, 2020)

Triple-Negative Breast Cancer Day (March 3, 2020)

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Anal Cancer Awareness Day (March 21, 2020)


April

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

National Oral, Head, and Neck Cancer Awareness Week

Testicular Cancer Awareness Month

World Health Day (April 7, 2020)


May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Melanoma Monday (May 4, 2020)

Women’s Check-up Day (May 11, 2020)

Women’s Health Week (May 10−16, 2020)

Skin Cancer Detection and Prevention Month


June

Cancer Survivors Month

Cancer Survivors Day (June 7, 2020)

Men’s Health Week (June 10−16, 2020)


July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month


 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2020)


September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

MPN Awareness Day (September 10, 2020)

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

Take a Loved One to the Doctor Day (September 15, 2020)

Thyroid Cancer Awareness Month


October

Breast Cancer Awareness Month

National Mammography Day (October 16, 2020)

Liver Cancer Awareness Month


November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Neuroendocrine Tumor (NET) Awareness Day (November 10, 2020)

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month


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Finding Support in Unlikely Places

This blog was originally published by Cancer Today by Patricia Anne Ward here.

WHEN I WAS DIAGNOSED ​with stage IC ovarian cancer in February 2018, my life came to a screeching halt. It was the first life-threatening health issue I’d ever faced in my 70 years of life. Despite my fear and anxiety, I knew I didn’t want my cancer or treatment to define me as a person. Honoring that wish turned out to be much easier in theory than in practice, as even a well-intentioned question like “How are you?” served as a reminder of my circumstances.

There were also some insensitive remarks that cut far deeper. One person told me, for example, that God never gives us too much to handle. Another described how cancer was a blessing reserved only for the strong—if this is true, I’d much rather be weak. Someone else suggested my cancer was a result of some transgression to God and that I should make amends.

Despite being surprised by these comments, I understood. People say a lot of things when they are faced with the uncomfortable concept of mortality. And my cancer was a tangible reminder of what we all know and ignore: Each of us has a finite amount of time.

It was shortly after I started losing my hair, a side effect of chemotherapy, that I began noticing others were uncomfortable around me. Some family and friends even avoided making eye contact when talking to me. Others used text messaging to avoid uneasy verbal conversations. With no one in my immediate circle undergoing cancer treatment, I felt alone.

That’s when I started discovering support in the most unlikely places. In the pickle and condiment aisle at the grocery store, a woman turned to look at me, a wide smile across her face. Not too long before our meeting, that woman wore a cap just like mine. She shared that she was two years out of treatment and her scans were still “clean.” We spoke for a bit, tearing up. I held hands with this kind stranger for a few moments. We hugged, wished each other well and went our separate ways.

At a clothing store, another woman stopped me after spotting that cap, which gave my cancer away. Apologizing first for interrupting, she then told a familiar tale of symptoms, diagnosis, surgery, treatment and the worst part: waiting. Still, she was approaching the five-year mark since her diagnosis with no evidence of disease. Speaking from a place of vulnerability but also strength, she described how her cancer had helped her to become more compassionate, a virtue that she would surely lean on, since her husband had been newly diagnosed with cancer. As we said goodbye, I promised her I would stay positive and upbeat—and strangely I wasn’t lying.

All through my treatment, chance encounters with people who knew what I was experiencing came to me just when I needed them. I saw these people as angels, and still do. They came with no judgement or preaching. There was no awkward response or agenda. Our connections were palpable.

There were other signs: I found feathers everywhere, next to my car in a parking lot, the floor in the garage or at the park. One simply blew in on a breeze and landed right at my feet. And each time I made a discovery of these gifts from nature, a sense of warmth and protection would envelope me. I have always believed in angels; I found it encouraging to think that they believed in me too.

For now, my treatments are over. My hair and eyebrows are growing back. My recovery continues. There will be more doctor appointments, more exams, and more wondering about and praying for a future with no more cancer. I’ve changed too. I am smarter, kinder and less quick to judge. When I am out of the house, I scan my surroundings for people like me—signs of treatment, signs of fear—to offer an encouraging word. I don’t know what the future holds, but I can’t help but believe that I am going to be OK. 

Patricia Anne Ward of Gaylord, Michigan, is a retired human resources administrator and supervisor who has been married to her husband, Richard, for 30 years. She is the former president of a local animal welfare group, Friends for Life of Otsego County. Her proudest title is survivor.​

Anxiety Management for Patients and Caregivers

This podcast was originally published by The Cancer Cast with Weill Cornell here.

 

Kelly Trevino, Ph.D., Clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital – Speaker Bio
  • Why anxiety management is so important for all those affected by cancer, plus actionable coping strategies.

    Guest: Kelly Trevino, Ph.D., a clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

    Host: John Leonard, M.D., world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital