Myeloproliferative Neoplasms Archives

Myeloproliferative neoplasms (MPNs) are a closely related group of progressive blood cancers in which the bone marrow typically overproduces one of the mature blood elements. Other shared features include tendencies toward blood clotting/bleeding, organ enlargement, bone marrow scarring (fibrosis) and a possibility of transformation.

More resources for Myeloproliferative Neoplasms from Patient Empowerment Network.

Comprehensive Hematological Cancer Centers

How Can MPN Patients Amplify Their Voice?

How Can MPN Patients Amplify Their Voice? from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff Bushnell and Summer Golden, a husband and wife team, share how they cope with a diagnosis of myelofibrosis. Both highlight the importance of patients and care partners amplifying their voice as part of the coping process.

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”

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.

Resource: AA•MDS Find Your Specialist

AA•MDS has launched a map of specialists who are seeing new patients for treatment or consultation.

It’s important for patients to seek consultation with physicians who have experience working with bone marrow failure disease. They have developed an interactive map of physician specialists in bone marrow failure disease who have worked with them in a significant way as speakers, writers, editors, and/or advisors. This map will allow you to search for physicians in your area by location using the zoom-in feature, by zip code, or by disease area utilizing the dropdowns provided below.

Please note:

  • This list is not comprehensive and there may be specialists in your area who have not yet been included.
  • Physicians may move to another institution for various reasons and may no longer be at the location noted on this map.
  • The map will be updated as often as possible.

Understanding Patient-Centered Care via Alliance for Patient Access

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

An MPN Care Partner Shares Why He’s Optimistic About the Future

An MPN Care Partner Shares Why He’s Optimistic About the Future from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell, husband of myelofibrosis (MF) patient advocate Summer Golden, explains why he’s hopeful about their future together. Jeff shares key resources that have helped him stay educated and maintain optimism.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

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A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

Transcript:

Jeff:

It’s important to educate yourself because the more you know the less fear can overcome you. And this particular disease – the research is happening so fast, and things are changing. In my estimation, they’ll find – right now, the only cure is a stem cell transplant. It’s normally not done for older people. That in itself is innately risky. I’m convinced, probably within the next five to seven years, there will be a cure for this disease that’s not a stem cell transplant.

The research is moving that quickly on it. And if you don’t follow the disease and the people that are working on it, the specialists, you’re gonna have a much greater chance of feeling powerless and getting overwhelmed by it. As Summer believes, attitude can have a huge, huge impact on how the course of your disease runs. And a doctor would tell you the same thing.

For me, it started with Patient Power. Patientpower.info, I believe is, what it is. They have a whole section for myeloproliferative neoplasms and myelofibrosis, and they’re short videos. And you get a chance to listen to the best doctors that are the head people in this, Dr. Mesa, Dr. V [Verstovsek], and Dr. Jamieson – all the people that are really the movers and shakers. They speak. And you also get a chance to hear other patient’s stories and how they’re dealing with it. And that will give you a much better idea of what you’re facing. And you can really understand things from there. And you can get your knowledge.

Fear comes from lack of knowledge. In my job as a pilot, I flew for 50 years. I very, very rarely was afraid because my knowledge was so great and was reinforced every year by continual training that I felt prepared to handle anything that might come across to me. Knowledge is really important. It will allay your fears dramatically.

When I started online and heard about people that had been journeying with this for 10 or 15 years, initially, I had thought – well, this is a year or two, and it’ll be the end. And then I realized, plenty of people have lived with this for a long, long time. And they had a journey, and they’re doing it successfully. And that gave me confidence.

The more people you can talk to about it, the more you can put your journey in perspective. And it’s really hard to put in perspective for this particular disease because it affects everybody vastly differently. Some cancers – the progression is very, very linear. Everybody kind of goes through the same thing. This one – it depends on the mutations you have in your blood and all kinds of things like that, and some people get really bad symptoms quickly.

Others, they don’t. But the more you know about how those things affect you, the more you know and can understand about what to expect. And the more people you talk to who have it, you can find out about their journeys. It helps put yours in perspective.

I’m optimistic because I really keep up to date on what’s going on. And I see the doctors that are in the forefront of this and the research that they’re putting in and the care they have for working on this disease and the knowledge they have, and I just am quite optimistic. And as I say, I’m following the medical developments extremely closely.

I went to the ASH Conference last year. And I’ve gone to another conference that our doctor spoke at. And I’m just kinda blown away by – I’m fascinated by the science.

My advice would be find out as much as you can about it and support each other in a way that works in your own marriage.

Summer and I approach life a little bit differently. And yet, one of the reasons we do so well together is we kinda have both ends of the spectrum covered. And I sensed that when I met her 20 years ago. And we brought something to the table that each of us needed. And if you can find that in your relationship with your significant other that has the disease, what you can bring to it, what they can bring to it, you can be a tremendous support for each other.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell shares how he and his wife, patient advocate Summer Golden, have dealt with her myelofibrosis (MF) diagnosis. Jeff explains how online support and finding an MPN specialist were essential steps in helping them continue to live life to the fullest.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

 

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Transcript:

Jeff:

The worst part was initially. We didn’t get a myelofibrosis diagnosis.

It took about a month because in order to definitively diagnose it they have to take a bone marrow sample and send it to a pathologist and so on and so forth. So, all that time, I’m worrying about the possibilities. It could be leukemia or this, that, or the other thing. My way of handling and dealing with scariness – I’m a retired pilot – is to find out things, knowledge.

I spent a huge amount of time on the internet. The LLS Society has papers about it, and I read those.

And the more I got into it – once we found out it was myelofibrosis, I’ve read almost all of the papers that the doctors write for each other to find about this. That doesn’t interest Summer in the slightest. It interests me greatly. So, when we have an appointment with the doctor – when I’m talking to the doctor, it’s like two doctors talking to each other.

When Summer’s talking to her, they talk on a different plane. It’s much more about mental approach to things and that kind of thing.

And for me, when I think back to the beginning of when we had this and where we are now two years later, we’re living the life that we lived before she was diagnosed to be real honest with you.

We do everything that we did before she was diagnosed the same way we did it before, and it was a trip that probably everybody who gets diagnosed or deals with a person that has the disease takes. When it first happened, it hit us like bricks coming out of the sky hitting us on the face. Literally, when we first went to the hospital and she got the word that there was a problem – as I say, we lived in two separate houses – I literally was afraid to call her phone figuring she might be not there. I was that scared. And then, after we met our doctor, which was extremely fortuitous – when we went to the emergency room, the person that was there, she said these look like leukemia things.

So, she called the oncologist. The oncologist on call is our current doctor, Dr. Tiffany Tanaka, and she’s a specialist in this disease. It was like it was meant to be. And Dr. Tanaka asked the guy to do some other tests and then said, “Send her home, but tell her I need to see her this week.” So, we’re thinking all these horrible things. And its New Year’s weekend, so the clinic is closed for about five days, you know? We’re worrying and worrying and worrying.

We finally saw Dr. Tanaka, and it was like a breath of fresh air. This wonderful doctor has the ability to just communicate with the patients. I’m interested in the disease, so she communicated on my level. Summer is not interested in all the medical jargon, so she was able to explain to Summer what was going on and just very, very reassuring, very reassuring.

And then, I went and started getting information. That’s my way of coping with things. The first place I went was – I went to Patient Power and found a lot of information there.

And then I found the online myelofibrosis support group at Facebook. And that was very, very useful. When I started reading about the fact that some people had this for many, many years – then I said this is not – nothing’s gonna happen in the next year or two. We can go back to living. And once we learned more about it and spent more time with our doctor and Summer was able to live her life once she got taking the medicine – she takes Jakafi.

That controlled the basic symptoms, and we haven’t looked back. We just started living our life the way we had been living it before.

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs from Patient Empowerment Network on Vimeo.

Could laugher really be the best medicine? Patient advocate Summer Golden explains how she uses comedy to cope with her myelofibrosis (MF) diagnosis and shares her mission to inspire others.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

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Transcript:

Summer:

When I was initially diagnosed after some other false starts with an MPN, I was kind of shocked because I’ve never really been sick, and I don’t take medications, but I didn’t think about it – that sounds crazy; I can’t explain it. I just figured I’d be okay, and the main thing – I didn’t wanna give up this theater.

You know how when you’re my age, people talk about nothing but their illness sometimes? I just never been into that, so it wasn’t part of my personality.

I started doing comedy two years ago because a friend of mine was taking a comedy class, and I went to her showcase, and I thought, “I should try that, even though I’ll never be funny, I have no jokes, and I don’t know what I would say.” But, I went, and I did comedy in clubs for a while, and then I didn’t – I don’t really like drinking and dirty jokes, so I kind of got away from it off and on, and then, when I got into doing it about my myelofibrosis, then I saw a purpose in it, so I went back to it.

I was thinking about whether my life was gonna be changed, how this was gonna change me, so I emailed my comedy teacher in the middle of the night, and I said, “Do comedians ever talk about cancer, having it?” And, he said, “Only if they have it.” So, I emailed him back and I said, “I’m coming back to your class,” so I did. He assigned everyone to be in a showcase. I was gonna do mine about cancer. It was six weeks, so I had to find humor. I don’t know how I find it. I just kind of see things.

I was shocked because I thought people were gonna hate it, and I was gonna quit, and then I’d invited my doctor and two friends, so I thought I’d better not just not show up. But, people came up and said they were inspired. I was just amazed because I mainly –I don’t go out of my way to think of – I do think of things that are funny, but it’s just – it’s a real thing. I try to keep my comedy real.

It’s helped me by being in control. I don’t pay much attention to the symptoms because I’m kind of over them.

Just helped me feel like I’m doing what I can do, and so far, it seems to be working, as long as I get enough sleep.

How do I think comedy could help other people who have health problems? I can tell you one way I thought to help somebody. I wanna start a class for people, but so far, there hasn’t been a lot of interest, but I think I could really help people doing that because I know how to write comedy.

If they really wanna do that, they would be a type of person that has humor, and they could do it, but you’ve gotta realize sometimes, people get a lot out of being sick. There are a lot of rewards, and so, they might prefer to have those rewards. For my way of thinking, if they wanna do humor, it’ll make a big difference, and if somebody wants to do it, they could call me, and I’ll help them.

Could an MPN Clinical Trial Be Right for You?

Could an MPN Clinical Trial Be Right for You? from Patient Empowerment Network on Vimeo.

Is a clinical trial your best MPN treatment option? Dr. Ruben Mesa explains the clinical trial process and how patients may benefit from participating.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

There is much exciting research in myeloproliferative neoplasms. First, research trying to understand, why do people develop MPNs, and why do they progress. This is crucial research, and that this basic research to better understand the diseases will help us asses whether our treatments are having an impact slowing down the progression of the disease, and help us better design therapies that, hopefully, can cure these diseases.

Be reassured  that our goal as a scientific community is to cure the MPNs. Now, until we’re able to do that, we want to be able to best control them as best we can. So, the next level of research is really in new therapies; primarily drug-based therapies, but future therapies using the immune system; potentially using vaccine therapy to try to better control the disease to make the disease as neutral in your life as possible.

Our goal, short of curing the disease is to make the disease as invisible in your life as possible. Hopefully, minimal side effects, minimal symptoms, protected against risk of blood clots or bleeding, ideally, decreasing the risk of progression, and hopefully without any significant side effects from the medication your receiving.

So, that really is our goal.

 Clinical trials are a crucial way for us to improve the treatments that we have for any diseases. And in particular, in areas like myeloproliferative neoplasms where we have therapies, but we don’t have cures, clinical trials are crucial. Clinical trials are a structured way for you to be able to receive a new treatment. That treatment is closely monitored, and starts with a strong belief that that treatment is going to be beneficial for you.

Being on a clinical trial has many steps, but you are in the driver seat in each of them. So, you’re able to enroll in a study, and you’re able to decide at any point whether or not you’d like to continue on in that study. You are made clearly aware of what you’re receiving; what dose; what to expect at each and every step of that therapy.

It’s a treatment just like any other, but we use them because we are hoping that it will be better than the treatments that we have, and we do it on a clinical trial so that we can learn from that experience. If that drug is better, then we should probably expand its use and give it to other people, and have it be approved and used around the world. Or for whatever reason that therapy is not as helpful as we would like, then we learn from that, as well.

Why was it not helpful? Was it the wrong therapy? Was it targeting the wrong aspect of the disease? Were there side effects that made the therapy not beneficial? So, we learn a lot about it in either direction. Hopefully, individuals who participate in clinical trials will have a direct benefit themselves by being able to experience a new therapy that is, hopefully, better. But also, they do have the ability to help other patients now and in the future that will be facing the same disease they have.

How Does Genetic Testing Impact Your MPN Treatment Options?

How Does Genetic Testing Impact Your MPN Treatment Options? from Patient Empowerment Network on Vimeo.

How can genetic testing results impact your treatment and treatment response? Dr. Ruben Mesa provides an overview of common mutations associated with essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF) and how identification of these mutations are moving research forward.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

We are learning much more about the genetics of Myeloproliferative Neoplasm, as we truly are about the genetics of many diseases. First, when I speak of genetics, these are not the genes we think of of inherited genes that are passed from mother and father, to son or daughter. These are the genes in ourselves that potentially can change over the course of our lives, and those changes or mutations can be associated with diseases.

So, what we have learned is that the genetic changes that are associated with myeloproliferative neoplasms are important, both in terms of predicting how the diseases might behave, and also, potentially in terms of therapies. The genetic changes fall into two different groups.

There’s a first group of the most common mutations that we think are important in driving the disease. The most common is the mutation in a protein called JAK2. That’s a mutation in about half of the patients with ET, half with PV – or half with myelofibrosis, and the majority with polycythemia vera. There is mutations in calreticulin. That’s about in a third of patients with ET, and a third with MF. And then, there’s mutations in MPL, which are present in a handful of patients with ET and with MF.

But in addition to those three mutations that tend to be mutually exclusive; patients tend to only have one of those, and there’s a small group of patients that do not have any of those three. But there’s another group of mutations that we have learned about.

That we are able to obtain on panels of sometimes anywhere from 40 to 100 genes that may or may not be changed or mutated in diseases like MPNs and the implications of what those pattern of changes in those mutations have for those patients.