What Healthcare Trends Are Observed in MPNs?

What Healthcare Trends Are Observed in MPNs? from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share trends they’ve observed since Summer’s initial diagnosis of myelofibrosis a few years ago. They share recent studies they’ve viewed and are following. Jeff gives a charge to viewers to be your own empowered patient and keep up with research when you can. “Be your own advocate.”

Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

Patient and Care Partner Address the Mental Aspects of an MPN

How Can Care Partners Combat Burnout


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

And I’m Summer.

Jeff:

And we’re your Network Managers (Editor’s Note: Now referred to as Empowerment Leads) for Myeloproliferative Neoplasms for the Patient Empowerment Network. And, we’re here today to talk to you about healthcare trends in MPN medicine, basically.

Summer:

I was diagnosed with myelofibrosis over three years ago. And at the time, they could only offer me one medication, Jakafi (ruxolitinib), which for me work but doesn’t work for everybody. So, I’ve had good luck with it and I haven’t really had any other symptoms.

Jeff:

But this is an exciting time in the MPN medicine because since that time, there have been two more medications released to control myelofibrosis. One called fedratinib. And just last month, pacritinib was released and approved by the FDA. So now there are three medications that can be used to treat the symptoms of myelofibrosis.

There are currently no medications that can cure a person of myelofibrosis. The only cure, currently, is a stem-cell transplant. But some exciting developments are happening that may even be able to cure it.

I just read an article that some scientists have found that the medication used in breast care – breast cancer treatment causes remission in bone marrow fibrosis in mice. So they’re working along the way to see if that will be effective in humans, eventually. And that might be, potentially, a cure for myelofibrosis. Those are exciting trends in the MPN research and medicine world.

Summer has other information that’s useful though.

Summer:

Yeah, that’s really exciting about the new medication. I was looking up what the Mayo Clinical has to say and being happy and having a good attitude really enhances the immune system. There is a chemical that you get that comes from being happy that really, really keeps the disease from being more serious.

So anyway, that’s what I believe in because I’m an actor and so I don’t get into the medical thing, but I know Jeff is brilliant for it. So, that’s exciting all along having a good attitude and the new developments in medication.

Jeff:

So, keep those in mind, consult with your healthcare provider, and you need to be your own empowered patient and keep up with the research by yourself. It’s all available online, no problems at all, just Google it and you’ll be able to keep up yourself. You have to be your own advocate.

Until next time, I’m Jeff.

Summer:

I’m Summer and, wait a minute, this is our little baby, Zelda.

Five Tips to Participate in MPN Care and Treatment Decisions

How can myeloprolferative neoplasm (MPN) patients become more active in their care? In the “How Should You Participate in MPN Care and Treatment Decisions?” program, expert Dr. Abdulraheem Yacoub of the University of Kansas Cancer Center shares five key tips MPN patients can take for a more active role for optimal health outcomes.

1. Become a Patient Self-Advocate

It’s vital to have the ability to advocate on your own behalf no matter your age at diagnosis. And some MPN patients will be diagnosed at a relatively young age and will have different MPN care providers over the course of their disease. These patients need to get accustomed with the idea of care approaches changing over time.

2. Get Involved and Build Your Village

Being involved in your well-being as a patient is of utmost importance, and thinking about your support network is recommended as one of your early steps as a patient. Think about who among your friends, family, co-workers, and spiritual community might be able to help support you – and ask your MPN care provider about support resources if you need some additional help.

3. Bring a Friend or Loved One to Appointments

It’s important to have someone else at your appointments with you to help understand the information you receive and to also take notes and to ask questions if it’s helpful for you. Having a second set of ears is especially important with your early visits about treatment options, and the use of telemedicine makes it easier for loved ones to help support your appointments.

4. Get a Second Opinion

Second opinions are no longer the taboo that they were once perceived as. Listen to medical facts given to you from your MPN specialist and from your primary treating physician. And if you want a second opinion from another MPN specialist, this practice is easier to carry out now through telemedicine.

5. Seek Out Credible Resources and Research News

Keep yourself informed about the latest MPN research and treatment news by visiting credible online resources. In addition to PEN, check The Leukemia & Lymphoma Society (LLS) and MPN Research Foundation. The annual meetings of expert conferences like the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) bring research updates for MPN online resources to cover.

By taking a more active role in their care, MPN patients can help determine the best care and treatment plan for optimal health outcomes.

MPN Patient Profile: Robyn Rourick Part 2

Read the first part of Robyn’s MPN journey here…

Picking up after 26 years of watchful monitoring of her myeloproliferative neoplasm (MPN), scientist Robyn Rourick was then referred for an allogeneic stem cell transplant by her MPN specialist, Dr. Gotlib. The transplant team started working through the matching process for a bone marrow transplant donor, which often begins with close biological relatives. Although Robyn’s only sibling wasn’t a transplant match, a person considered a near perfect transplant match for Robyn was found.

At that point in her journey, the possibility of entering a Phase II clinical trial called ORCA-1 was presented by Robyn’s transplant doctor. She discovered that the ORCA-1 treatment had the potential to completely eliminate graft-versus-host disease (GVHD). The clinical trial made sense to her. In Robyn’s trained scientific mind, she agreed that the trial was founded on sound scientific rationale with the potential for clear benefit and signed up for it. She researched other things like whether the transplant team could look at biomarkers to guard against graft-versus-host disease, but she decided to take the clinical trial path as her best option.

As for her feelings about the stem cell transplant, Robyn felt there was likely going to be a positive outcome for her due to the ORCA-1 clinical trial. Her knowledge about the trial really brought her a lot of comfort and put her at ease for the time she’d be around her family post-transplant. Robyn was lucky because her doctor was actually the primary investigator on the study. When he presented the transplant study as an option, that’s when she started to do more searching to find what patient advocacy groups were out there.

Looking back on her MPN journey, Robyn wishes that physicians would provide their patients with more patient advocacy resources, such as those available through organizations like Patient Empowerment Network (PEN). She feels fortunate that she discovered PEN through another patient advocacy website, and she firmly believes in PEN’s mission of empowering patients to gain knowledge to advocate on their own behalf. “I had the realization that in the clinical trial I was in, I was only the sixth patient, and the technology was stellar in terms of what we’re trying to do in terms of cell therapy. I just felt like patients need to know about the treatment advancements, and PEN is an excellent resource for learning about treatment and support options that I wanted to share my knowledge and patient experience with.” 

Robyn was fortunate to have a team of physicians in whose knowledge and treatment recommendations she could trust. She’s  tremendously grateful, because she knows it’s not always the case, and so offers this advice for others, “Make sure that you’re comfortable with your physicians. And if not, then move on. Don’t be afraid to reach out and to make other connections to other doctors, even across the globe. You shouldn’t hesitate to request a conference call with another provider to see if they’re aligned with your diagnosis and your watchful waiting or treatment recommendations. Patients must have the utmost confidence going through their cancer journey.”

As for the scientists who handled her sample in the ORCA-1 trial, Robyn was able to meet the scientists and saw the analytical data of her sample. She was highly impressed with the protocols that they used with the samples. Robyn was just the sixth myelofibrosis patient to join the trial. To have spent her life working on medicines for patients and then to be on the receiving end of this cutting-edge treatment for transplants made her feel very privileged. 

In her life post-transplant, Robyn has continued periodic blood work for routine monitoring and has been doing well. Two years following her transplant, Robyn’s myelofibrosis is in remission, and she has no evidence of fibrosis in her bone marrow. Her test numbers have been progressing nicely, and she hasn’t needed any additional treatment since undergoing the transplant. “I don’t have a single regret. I haven’t had a pimple, an itch, a scratch, absolutely nothing. My life has resumed exactly how it was before the transplant.”

In reflecting on her patient experience, Robyn offers this additional advice to other cancer patients, “Take a deep breath and give it some time to play out. The moment that I heard the word cancer and the risks with rapid progression, I had myself dead and buried. In my mind, what I needed to plan for was death. Prepare my family. Get everything in order. And to me, that was going to be the ultimate outcome. But then as things unfolded, I had conversations, did a little bit of research, and found out I did have some options. Things weren’t so negative in terms of progression and mortality. Don’t jump to the most negative outcome possible.”

MPN Patient Profile: Robyn Rourick Part 1

Though Robyn Rourick is a scientist by training and works for a biotechnology company, she took a mind-body approach to her myeloproliferative neoplasm (MPN) journey. The time that passed between Robyn’s initial MPN diagnosis and when she finally needed treatment was incredibly – and nearly shockingly – long. She was diagnosed with essential thrombocythemia (ET) 26 years after elevated platelets were shown on a routine blood test. After she saw a hematologist, they performed a bone marrow biopsy and concluded she didn’t have myelofibrosis and received the ET diagnosis. Robyn recalls of the time of her diagnosis, “I didn’t know about myeloproliferative disorders. Not many people did at the time. Nobody mentioned that I could potentially have an MPN.” 

Robyn’s blood levels were monitored over the years, and her platelets started to decrease. Though she didn’t realize at the time, her platelets were decreasing because her bone marrow was becoming more fibrotic. She was also tested for the early gene mutations (JAK2) that were discovered as more MPN research occurred but tested negative . She later switched to another hematologist who was very tuned into the gene connections. He looked at Robyn’s medical data comprehensively and was extremely attentive to any minor changes. As her blastocytes began shifting, he urged her to go see MPN specialist Dr. Gotlib. Dr. Gotlib did further analyses and classified her as having myelofibrosis, noting that when she was diagnosed with ET that her original healthcare team also couldn’t have  ruled out pre-fibrotic myelofibrosis at that time. Fortunately, Dr. Gotlib stated if he had diagnosed her with her original blood test 26 years prior, he would have recommended to simply watch and wait while monitoring Robyn’s blood levels on a regular basis. 

Although Robyn felt healthy and had no symptoms besides an enlarged spleen, as Dr. Gotlib dug deeper into her genetic profile, he found a unique mutation that suggested she was at risk for an escalation into acute myeloid leukemia mutation. He recommended Robyn for an immediate allogeneic stem cell transplant for her MPN treatment.    

Robyn then learned that graft-versus-host disease (GVHD) was a major concern for the transplant process, which can be debilitating. So she began to seek patient advocacy resources to inform her MPN journey. “I felt desperate and wanted to meet people who had myelofibrosis who successfully came through transplant. I didn’t want to just talk to a transplant person with a different disease.” Robyn went through some patient connection programs – including Be the Match, Caring Connections Program, and Patient Power – and was able to meet a few people and became quite close with one patient. 

She learned that even though transplant will cure your disease, doctors don’t always elaborate with patients on the potential for a compromised lifestyle due to  graft-versus-host disease. Sometimes patients will come through transplant in worse condition than before the treatment. Robyn had major fears about going through transplant and being able to work and do her extracurricular activities post-transplant. “I felt like I was going to be a letdown for my family and colleagues and didn’t tell my work until I was preparing to go out on leave, which in retrospect was silly.” After telling her manager, Robyn was given complete support, and realized she could have avoided carrying so much anxiety.

“For me, self-education and advocacy are important to enable yourself to have conversations about what’s possible in terms of your treatment. You don’t have to develop an in-depth understanding, but enough to have the ability to be conversational. If you’re proposed a certain pathway, it’s good to know enough to ask why. And if you’ve done some research on your own, then you can ask why not an alternate treatment approach. I think it’s really important to have some knowledge, because it builds your confidence to be able to move forward with what’s being proposed.” 

“Give it time, allow yourself to digest the information, have conversations about it, and develop your own understanding. At first, I was very closed about my diagnosis. I told my immediate family, and I told one very close friend who had gone through autologous transplant. The more that I began to talk about it and the more that I included people in the story, the easier my journey became.” Robyn also saw a cancer therapist who made some really good points to her. “She told me that ‘we’re all going to die of something, but most of us don’t know what that really looks like.’” In Robyn’s case, she had the opportunity to learn more about her disease, guide it, and direct her journey. And that opened up a whole new perspective.

The cancer therapist walked Robyn through some exercises: “What is it you’re afraid of? What do you have control over? Allowing yourself to gain control over some things will build your confidence that you can do this.” Robyn also encourages other patients to engage their network of friends and family and realize that it’s okay to depend on people. It’s not your fault that you have this diagnosis. Getting over the apprehension of telling people about your diagnosis and embracing help from others are key pieces of advice.

Robyn views patient empowerment as essential to the patient journey. She discovered Patient Empowerment Network (PEN) through another patient advocacy website and felt it brought her MPN patient experience full circle in terms of learning what’s available. “As I’m learning more about PEN, I’m just dazzled by the different forums they have to enable knowledge transfer, support systems, and advocacy.” 

Read the second part of Robyn’s MPN journey here…

COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?

COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know? from Patient Empowerment Network on Vimeo.

 Should myelofibrosis patients get the COVID-19 vaccine? Dr. Joseph Scandura discusses the risks and benefits of vaccination.

Dr. Joseph Scandura is Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura, here.

Related Programs

What Are the Considerations When Choosing Myelofibrosis Therapy?

Expert Perspective: Promising Myelofibrosis Treatment Research

What’s YOUR Role in Making Myelofibrosis Treatment Decisions?


Transcript

Katherine Banwell:

Is the COVID-19 vaccine safe for patients with myelofibrosis, and how does the vaccine affect treatment? 

Dr. Scandura:

So, I will flip that question around a little bit. I live in New York City.  

If I cross the street, the decision to cross the street is potentially a life-or-death decision. And whatever minor decision you’re making, there are always risks and there are always potential benefits. So, I might get home, I might get run over by a cab. And so, I try to mitigate those risks as I can by crossing in certain streets, looking both ways. So, when we talk about vaccine, we also have to talk about the other part of it. What is the risk of not being vaccinated? And so, we know COVID-19 is a severe illness in a subset of patients, we know that if you take all people, about 1 percent of people die from COVID. 

 If we take all people from the vaccine who have been vaccinated, the number of serious side effects is very, very, very, very small, so, like .000, you know, something percent. 

So, very low. It doesn’t mean it’s zero, but it’s very, very low. So, just looking at those numbers, I say for virtually everybody, the risk/benefit is in favor of vaccination. In patients with myelofibrosis, we’ve had the opportunity collectively across the world to gather experience and look at patients with myeloproliferative neoplasms and how they responded to COVID when they were infected with COVID. And worldwide, the toxicity of COVID in patients seems to be quite high. And so, patients with myelofibrosis may be at higher risk from COVID. 

I can’t say that they absolutely are because this is imperfect data, but that’s the experience that has been published so far.  

We really don’t know anything about the experience of patients to the vaccine. Actually, at my center, we have a myeloproliferative diseases center, and we are trying to collect that information because patients often ask, and I don’t have any results from that. But I think that, all told, there is no reason to expect higher symptoms in patients with myelofibrosis from vaccination. And what we do know is that the risk of not being vaccinated is probably higher than the risk of being vaccinated.   

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. She is also a professional nutritionist and plans to start her own blog to 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

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.

See More From the The Path to MPN Empowerment

Related Programs:

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

Newly Diagnosed with an MPN? Start Here.

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.

 

See More From the The Path to MPN Empowerment

Related Programs:

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

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN Related Anxiety

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.

Fertility Preservation in People with Cancer

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

Living with a Myeloproliferative Neoplasm

This video was originally published by Cancer Support Community on May 26, 2015, here.

 

After Cancer, Ambushed By Depression

At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?

Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”

Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.

What Causes Depression?

Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness.  However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.

In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.

Incidence of Depression in Cancer Survivors

Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life   event like cancer have an increased risk of depression that can persist for many years.  While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.

The Challenge of Identifying Depression in Cancer Patients

Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients.  This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.

Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.

Are You At Risk of Depression?

Depression can occur through a combination of factors, with some of us being more prone to depression than others.  Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.

Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.

Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.

Try answering the following two questions.

Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?

If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.

Depression Checklist*

(Tick each of the symptoms that apply to you)

  • Trouble sleeping with early waking, sleeping too much, or not being able to sleep
  • On-going sad or “empty” mood for most of the day
  • Finding it hard to concentrate or make decisions
  • Feeling restless and agitated, irritable or impatient
  • Extreme tiredness and lethargy
  • Feeling emotionally empty or numb
  • Not eating properly; losing or putting on weight
  • Loss of interest or pleasure in almost all activities most of the time
  • Crying a lot
  • Losing interest in your sex life
  • Preoccupied with negative thoughts
  • Distancing yourself from others
  • Feeling pessimistic about the future
  • Anger, irritability, and impatience

Add up the number of ticks for your total score: _______

What does your score mean?

  • 4 or less: You are unlikely to be experiencing a depressive illness
  • 5 or more: It is likely that you may be experiencing a depressive illness.

NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.

Depression – The Way Forward

It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.

The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there.  Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression.  There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.

The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.

A Note on Helping a Loved One with Depression

Perhaps you are reading this because you’re concerned about a loved one who might have depression.   You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.

The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.


*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.

Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier

Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.

Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural

The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.

In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.

Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home

Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.

Don’t Forget Their Mental Health

Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.

For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”