Tag Archive for: treatment plan

Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Myelofibrosis expert Dr. Naveen Pemmaraju advises on how patients and healthcare teams can partner together by communicating care goals and exploring treatment options.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program and Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju.

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Transcript:

Katherine Banwell:

When it comes to choosing therapy, Dr. Pemmaraju, it’s important to work with your healthcare team to identify what is going to work best for you. So, as a clinician, how do you define shared decision-making?  

Dr. Naveen Pemmaraju:

Very important. So, shared decision-making to me means a partnership. It means a journey that the patient and the providing team are about to embark on. It’s a very different approach than a one-way, I tell you, you do this. Instead, I see it as a bi-directional exchange of ideas.  

Each visit, each EPIC in-basket or EMR communication, each touch with the healthcare system, the pharmacist, the PA, nurse, whoever is dealing with the patient, I think that’s the key.  

So, a bi-directional exchange of ideas, what’s important to you as the patient? What’s important to the caregiver? What are the worries? What are the barriers? Designing a treatment system around that, a treatment paradigm and approach. Discussing risks, benefits, side effects, toxicities, alternatives, and then a constant dynamic reevaluation throughout. That’s what I pictured. It has to be a journey and a partnership.  

Katherine Banwell:

Well, part of making care decisions is setting goals, and I think you’ve just alluded to that. What are treatment goals for myelofibrosis, and how are they determined?  

Dr. Naveen Pemmaraju:

That’s a great question. Myelofibrosis treatment goals are changing in real-time. I would say as of this recording, 2024, the main three things that I want patients to think about and the caregivers.  

Number one is a stem-cell transplant eligible or not? It used to be based on age and comorbidities, but there are other factors. So, are we going to stem cell transplants or not? That determines a lot of the journey. Two is a clinical trial or not. So, are we doing the standard of care therapy, often one pill at a time, or clinical trial, either an IV drug, a pill, or combinations? Then three is that dynamic assessment that we talked about, which is what are the goals of care? Often our patients with myelofibrosis have decreased quality of life, enlarged organs, fatigue, cachexia, and malnutrition.  

These are the central components. A lot of times they’re due to the myelofibrosis itself. So, the treatments may improve that. A lot of times it’s the other comorbidities, other health issues. So, working with the PCP, the primary care provider, and the local team. In my case, many of my patients are referrals, as you know, the local MD team. I think these are the three components, transplant eligibility or not, clinical trial versus standard of care. 

Then once we’ve made a treatment decision, minding toxicities and quality of life.  

What Is Whole Person Care Exactly?

Whole person care is a key part of cancer treatment, but what does it mean exactly? Experts Dr. Amy Comander from Massachusetts General Hospital and Nicole Normandin Rueda, LMSW from PEN discuss the meaning, aspects, and benefits of whole person care for cancer patients.

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Why Is It Important to Address Whole Person Care?

Transcript:

Lisa Hatfield:

We hear about the importance of wellness during and after cancer treatment. Some refer to it as whole person care or lifestyle medicine, but what is it really? I’m getting to the bottom of it in this Patient Empowerment Network RESTORE Program. 

Dr. Comander, can you explain the concept of whole person care in the context of cancer treatment, and why are these concepts or strategies important for patients and care partners to understand?

Dr. Amy Comander:

Thank you for that excellent question. As an oncologist, I really focus on providing care for the whole patient or really taking what we also refer to as a patient-centered approach, certainly taking into account my patient’s diagnosis, the stage of the cancer, and the appropriate treatments, but also how can I best address all the other needs my patient is facing, whether that’s transportation to appointments, her goals when it comes to her treatment plan, her neighborhood she lives in and how easy it is for her to get to appointments and get outside to get exercise, and really thinking about all of these needs and integrating them as I formulate a treatment plan and also bringing in other members of our team to address the needs that my patient may face so we can really take care of the whole patient. So I’m so glad that you asked about that.

Lisa Hatfield:

Thank you. Nicole, can you share what the meaning of a whole person care is for you as a social worker? As you interact with patients, how do you explain it to them?

Nicole Normandin Rueda:

Sure. So whole person care means you’re addressing not just the physical aspects of cancer, but also the emotional, social, psychological, and spiritual dimensions of the patient’s experience. 

The approach recognizes that cancer affects every aspect of a patient’s life and that effective care must go beyond just the traditional medical treatments. It also includes everything from nutrition, physical activity, counseling. It’s very personalized to the patient, meaning we take the time to get to know the patient, figure out how we can help tailor the interventions that we’re going to suggest to their specific needs, including everything that we need to consider, such as their personal, cultural, or social context. And finally, it’s holistic. So we’re addressing emotional, psychological, social challenges that may arise.

In addition to just being diagnosed with cancer, everything else that’s compounded whenever that happens to somebody, we want to make sure that we are addressing as much of that as possible. So whenever I’m interacting with patients, I’m the social worker that comes in and really just gets to explain all of this from A to Z, that we are, as a team, we’re going to take a comprehensive approach that treats them as individuals, rather as just focusing on treating the disease.

I emphasize that we’re looking at their overall well-being, helping them manage their day-to-day life, as well as everything else that comes with a cancer diagnosis, their side effects, the emotional stress, the financial issues that may come about, the change in roles, the cultural things that may come up. All of these things will be addressed in some way or another, depending on what the needs of the patient are.

Lisa Hatfield:

You heard it here directly from the experts. Thanks for joining this RESTORE Program. I’m your host, Lisa Hatfield.

Questions to Ask About Your Advanced Non-Melanoma Skin Cancer Treatment Plan

Questions to Ask About Your Advanced Non-Melanoma Skin Cancer Treatment Plan from Patient Empowerment Network on Vimeo.

Are there key questions that advanced non-melanoma skin cancer patients should ask about their treatment plan? Dr. Anna Pavlick provides expert advice, emphasizing the importance of discussing treatment milestones and exploring alternative options if needed.

Dr. Anna Pavlick is a medical oncologist and the founding Director of the Cutaneous Oncology Program at Weill Cornell Medicine and NewYork-Presbyterian. Learn more about Dr. Pavlick.

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Transcript:

Katherine:

What questions should patients be asking about their proposed treatment plan? 

Dr. Pavlick:

I think it’s important to obviously know everything that you can about the medicine that you’re going to be given. What are the side effects? How does it work? Is it pills? Is it IV? Are you injecting something into me? In addition to that, I think patients also need to ask, “Well, how are you going to know that it’s working? When do we do scans? When do I get reevaluated?” Because again, not everybody is going to respond to every therapy. If we did, listen, I would retire and open up a dog reserve. But what is the milestone? 

How many cycles or how long before we determine this is working or this isn’t working? And many times, because patients have visible lesions on their skin, it’s not really hard to know whether something is working or not because you’re going to watch it get better or you’re going to see it get worse.

And many times, when patients ask me that, my answer is we have to see as we go along. But if we see it getting better, we keep going until it’s gone or it just stops shrinking. And then we talk about maybe removing it. On the contrary, if we give patients medicine and after let’s say two treatments, this spot on their skin has increased in size and looks like it’s growing, well, maybe we want to stop and reconsider what we’re doing and change to something different.  

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan from Patient Empowerment Network on Vimeo.

How can you engage in your prostate cancer care? In this animated video, you will learn about factors that may impact a prostate cancer care plan and tools for partnering with your healthcare team on treatment decisions.

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Transcript: 

Niki: 

Hi, thanks for joining us! I’m Niki, and I’m a prostate cancer nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer.   

Anthony: 

Throughout this video, Niki and I are going to discuss factors that may impact a patient’s prostate cancer care plan.  

And as we’ve mentioned in previous videos, it’s important to set goals with your team and understand all of your options before deciding on an approach.  

Niki: 

Right, Anthony. So, what could impact a treatment plan decision? Factors may include: 

  • Your age and overall health, including any existing conditions that you may have.
  • Disease-related symptoms may also affect your options.
  • The stage and grade of your prostate cancer and whether you need to be treated right away.
  • Test results, including genomic testing, which identifies the presence of genetic mutations in the cancer and may inform how your cancer will behave. 
  • Possible side effects, both short term and long term, may also affect your choices. 

Anthony: 

And, of course, your personal preference should guide the decision as well as how the option may impact your lifestyle. Be open with your care team about what’s important to you and be clear with your goals, including life plans and personal commitments.   

Here are some tips to take a more proactive role in your care: 

  • Talk with close family members and friends about your options. 
  • Consider a second opinion to help confirm your approach. 
  • Talk to your healthcare team about your condition and care options. And ask them for resources available to you, including financial help and emotional support, when making decisions.​ 
  • You can also visit advocacy group websites that have information about prostate cancer, treatment options, and support groups, to help you understand what’s available.​ 

Niki: 

Those are great tips! It’s also a good idea to ask your doctor what they feel is the best approach for you and why. Remember, there is no one-size-fits all approach, and what works for one person may not work for you. 

Anthony: 

Thanks for joining us! Be sure to download the guide that accompanies this video to help you review what you learned.  

And visit powerfulpatients.org/pc to access more videos with Niki and me.