Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients
Expert Advice for Newly Diagnosed Waldenström Macroglobulinemia (WM) Patients from Patient Empowerment Network on Vimeo.
What should you know if you or a loved one has been diagnosed with Waldenström macroglobulinemia (WM)? Dr. Shayna Sarosiek of the Dana-Farber Cancer Institute shares key advice.
Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.
See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit
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Transcript:
Katherine:
Dr. Sarosiek, welcome. Would you please introduce yourself?
Dr. Sarosiek:
Sure. My name is Shayna Sarosiek, and I’m a hematologist and oncologist. And I work at Dana-Farber Cancer Institute where I see patients in the Bing Center for Waldenstrom’s. And really just focus on Waldenstrom’s and other IgM-related disorders.
Katherine:
Great. Thank you for joining us today. What three key pieces of advice would you have for a patient who’s just been diagnosed with Waldenstrom’s?
Dr. Sarosiek:
So, certainly being diagnosed with Waldenstrom’s can be incredibly overwhelming. So, a couple of things I try to remind patients of is one, in general, Waldenstrom’s is a pretty slow-moving disorder. And so, there’s a lot of time in most cases for patients to really get additional information, seek second opinions, learn really about the treatment options and make a really well-informed decision. And even in the cases where the patient might need treatment more urgently. We have some things that can kind of temporize or stabilize patients while we have time to make those informed decisions.
So, one, I would say there’s always time to make a well-informed decision about the next steps. So, although it can be overwhelming, that’s important to keep in the back of their minds. And the other thing for patients I would say is just to remember this is a constantly evolving field. And a conversation you have with your physician today, six months from now or a year from now is going to be totally different as things improve, more treatments are available.
And that’s a really positive thing for patients to remember, is that things are honestly just really every day improving in the field. And the third thing I would say is that there are really incredible resources available for patients. Videos like this, educational material, patient support groups. And there are really just a lot of opportunities that patients should and could take advantage of in order to really improve their care, be educated, and really know what treatments are available to make the best decisions.
Why Patients Should Speak Up About WM Symptoms and Side Effects
Why Patients Should Speak Up About WM Symptoms and Side Effects from Patient Empowerment Network on Vimeo.
Is Waldenström macroglobulinemia (WM) causing fatigue? Dr. Jorge Castillo shares why WM patients should share any symptoms and side effects they experience with their healthcare team.
Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.
See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit
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Factors That Affect Waldenström Macroglobulinemia Treatment Decisions |
Transcript:
Katherine:
Fatigue seems to be very common among Waldenstrom’s patients. Here’s a question that we received before the program. Kasey asks, “Why do I feel so tired all the time? Is there anything that can be done about it?
Dr. Castillo:
That’s a great question, and as I said before and basically kind of summarizing what I put together, I mean, there are many patients why a symptom with Waldenstrom’s could be fatigued. One of them is they could be anemic. The other one, they could have some hyperviscosity symptoms causing some fatigue, maybe some inflammation in the body because of the Waldenstrom’s, but maybe there are other reasons why patients can be fatigued.
And if you go out there in the streets and you start asking people, “Are you tired?” 80 percent of Americans are going to be tired. I’m not trying to minimize the symptoms of the patients. What I’m trying to say is we need to be very careful at understanding what the relation of the fatigue is with the disease. We need to be convinced that there is a relation there.
If that happened in my clinic – for example, a patient comes to see me, and they are fatigued; their hemoglobin is 14, which is normal; their IgM is about 1,000, which is not supposed to cause hyperviscosity. So, I do not know really in that context if the Waldenstrom’s is driving the fatigue or not.
Katherine:
Or if it’s something else.
Dr. Castillo:
Exactly. So, we need to make sure that the patient doesn’t have any iron deficiency, that the patient doesn’t have any thyroid problems, that the testosterone problems are okay, that there’s no sleep disturbances, that there’s no depression. So, there’s so many different other things that we need to make sure are not there before we mount into that. Because if someone is fatigued with a hemoglobin of 8, which is very low, with my treatments, if I make that 8 14, I know the fatigue is going to get better. But if the patient is fatigued with a hemoglobin of 14, which I am not going to improve with my treatments, then how confident do I feel that I’m going to improve the patient’s quality of life with a potentially dangerous treatment?
So, we talked about already secondary leukemias, neuropathy, other problems that the patient can have with the treatments or because of the treatments.
So, we need to balance that out and understand that the potential benefit has to be higher than the potential risk, and that’s why the personalization comes into play. So, fatigue is a big issue, and we try to take a very systematic approach about that, you know, ruling out other conditions, making sure that we understand its relation with the disease before recommending treatment just for fatigue.
Katherine:
Yeah. This is one side effect that is so important for patients to share with their healthcare team, right?
Dr. Castillo:
Oh, absolutely.
Katherine:
So that their healthcare team can know how to treat them.
Dr. Castillo:
That’s right. And again, there are so many interventions that are not medications that could be done in these type of situations, right? Meditation, mindfulness. There are so many other approaches to try to help in these type of situations, changing a little bit sometimes the perspective, trying to be a little bit more on the positive thinking, right?
So, there are so many different ways outside of pharmacological approaches that we can use to try to improve our patients’ quality of life.
Katherine:
Yeah. Knowing that one has an incurable disease can be very stressful, right? Knowing that you have to live with this.
Dr. Castillo:
That’s absolutely correct, and again, what I’ve seen happening in some of my patients is every little thing that happens to them, they do not know if it’s because of the disease or not.
Katherine:
Oh, yeah.
Dr. Castillo:
“So, I have a twitch there. Oh, it’s due to Waldenstrom’s. Do I need to be treated because of that twitch?” And that, I understand it. Well, I try to understand it. I’m not in that same situation, so I cannot understand it completely. But I try to understand how if you don’t trust your body anymore, right? I mean, you have a disease, and you don’t trust your body anymore, then how you trust all these little symptoms here and there?
So, in my conversations with my patients, I discuss these things openly and that you’re going to have a lot of different symptoms here and there. Most of them probably are not going to be related to the disease, but if some of them are concerning enough to you in terms of your activities, in terms of eating, drinking, sleeping, social life, sexual life, you know, working life, then let me know, and then we will be happy to investigate those because anything can happen to anybody.
So, you can have other problems. Waldenstrom’s doesn’t protect you from anything, so, and it’s always important to discuss this with patients and pay attention to the patients, not dismiss their symptoms, think about them with them, talk about them with the patients to try to understand how these are affecting them.
What Is the Patient’s Role in WM Treatment Decisions?
What Is the Patient’s Role in WM Treatment Decisions? from Patient Empowerment Network on Vimeo.
Dr. Jorge Castillo discusses the patient’s role in their Waldenström macroglobulinemia (WM) treatment decisions and shares advice encouraging patients to be active participants in their care.
Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.
See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit
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Why Patients Should Speak Up About WM Symptoms and Side Effects |
Transcript:
Katherine:
What do you feel is the patient’s role in treatment decisions?
Dr. Castillo:
From my perspective, the patient’s role is very important. I need, as a physician, that the patient feels that it’s part of the team here. So, when patients come to see me, I strongly encourage patients to bring as many people as they want with them. If they want somebody on FaceTime at the same time, I’m happy with that too. And that helps because the amount of data that we provide, the amount of information that we provide, is a lot in terms of quantity. But sometimes, it’s not easy to understand when you just hear it one time, right?
So, having somebody taking notes, having somebody else taking notes, having somebody else listening, somebody else asking questions, and then somebody else explaining back to the patient – the patient is looking for the best for them, but if he’s also affected by the whole process. It would be naïve to feel – or to think – that somebody was told they have an incurable blood cancer, and they are completely paying attention to everything you’re saying, after you said something like that.
So, I think it’s important for patients to be there with family, friends, or whoever wants to be there to help out. I think that’s a really important aspect. Then, number two is you need to know about your own disease. And I am fortunate to work with a group of patients who are highly educated, to the point that they get to know more about their disease than their own doctor. And I think that’s key. I think that’s important. For me, that is not threatening or challenging. I think that is actually a good thing.
And that way, I can have a more direct conversation, meaningful, because I understand that the patient is understanding what I am saying, and we are trying to speak the same language, so I think that is key also. So, bottom line, I think education from the patient perspective, involvement of their care, I think that’s key so they can be their own best advocates.
There is going to be a lot of – since it’s a rare disease, there’s going to be a lot of backs and forths with different physicians. Some physicians are going to be more intensive and trying to treat when the patient doesn’t need to be treated. The opposite is also true in which a patient, they do need treatment, and the physicians are saying, “No, we can wait a little bit longer.” And again, that has nothing to do with the quality of the doctor. It’s just the fact that the disease is rare, and to keep up with it is very difficult. So, the patient being their best advocate is actually a very important role that they should have.
Katherine:
Knowledge is power.
Dr. Castillo:
That’s right.
Three Ways to Partner in Your Waldenström Macroglobulinemia Care
How can Waldenström macroglobulinemia (WM) patients become partners in their care? In the “Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You?” program, expert Dr. Jorge Castillo from Dana-Farber Cancer Institute shares three key ways that WM patients can take a more active role for optimal health outcomes.
1. Ask Your Doctor When the Appropriate Time to Treat Is
WM patients can often remain in the watch-and-wait phase of their disease for many years, but it’s important for the oncologist to monitor the patient during this time. Ask your doctor when the appropriate time to treat will be, make sure that your bloodwork is monitored on a regular basis, and report how you’re feeling and all of your symptoms.
2. Establish Your Treatment Goals and Plan
Depending on each Waldenström macroglobulinemia patient, treatment goals may vary depending on the patient age, overall health, lifestyle, and other factors. Work together with your healthcare team to determine your treatment goals and then learn about treatment options. Take action to both ask your WM provider about treatment options and ask about credible Waldenström macroglobulinemia online resources to do further research. And then discuss your treatment options with your WM provider to determine the best treatment for you.
3. Become a Proactive Patient
WM patients can take actions to further advocate for their best care. Educate yourself about your condition by reading credible online resources like International Waldenstrom’s Macroglobulinemia Foundation, Lymphoma Research Foundation, and The Leukemia & Lymphoma Society. Bring a friend or family member to your appointments with your Waldenström macroglobulinemia doctor to help take notes or to ask questions – and make sure to advocate for yourself if you feel ignored or unheard.
By taking a more active role in their care, Waldenström macroglobulinemia patients can help determine the best treatment plan for optimal health outcomes.
Waldenström Macroglobulinemia Treatment Decisions: What’s Right For You? Resource Guide
Waldenström Macroglobulinemia Patient First Office Visit Planner
Waldenström Macroglobulinemia Patient Follow-Up Visit Planner
Waldenström Macroglobulinemia Care Partner First Office Visit Planner
Waldenström Macroglobulinemia Care Partner Follow-Up Visit Planner
Medical Tests for Waldenström Macroglobulinemia
Editor’s Note: This guide was originally published by The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) here.
By Guy Sherwood, M.D., 2007. Revised by Linda Nelson and Sue Herms, 2016, 2020.
Medical_Tests_2021-English-Covers
Waldenström Macroglobulinemia Glossary and Abbreviations
Editor’s Note: This guide was originally published by The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) here.
Written & compiled by Guy Sherwood, M.D., Bret Blakeslee, Sue Herms, & Peter DeNardis, 2015. Revised Linda Nelson, Glenn Cantor, & Sue Herms, 2020.
WM_Glossary
Frequently Asked Questions About Waldenström Macroglobulinemia
Editor’s Note: This guide was originally published by The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) here.
By Peter DeNardis, Marcia Klepac, Elena Malunis, and Linda Nelson, 2017. Revised Linda Nelson, 2019.
Frequently_Asked_Questions_English_FINAL_COVERS-022021-1
What You Need to Know Before Choosing a Cancer Treatment
What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.
Haga clic aquí para ver en español
What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.
If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.
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TRANSCRIPT:
Dr. Jones:
Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer.
Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.
Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.
Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different. And, therefore, should be treated differently.
We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.
Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.
The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.
Louis:
Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.
Dr. Jones, Can you explain how targeted therapy is different than chemo?
Dr. Jones:
Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.
Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.
Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.
These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers. As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.
Louis:
Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.
When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions.
Dr. Jones:
And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have.
So how can you use this information to access personalized treatment?
First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.
Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.
Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.
And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.
Louis:
All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.
Dr. Jones:
Thanks for joining us today.
This program is supported by Blueprint Medicines, and through generous donations from people like you.
Communicating About Cancer: A Brief Guide to Telling People Who Care
Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).
Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:
Kids:
- It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
- According to the American Cancer Society, children need to know the basics, including:
- The name of the cancer
- The specific body part(s) of where it is
- How it’ll be treated
- How their own lives will be affected
- Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
- Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings
Family and friends:
- Select a group of people, including immediate family and close friends
- Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
- Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
- Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
- As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help
Work:
- Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
- However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
- Actual disability
- A perceived history of disability
- A misperception of current disability
- History of disability
- The ADA also:
- Protects eligible cancer survivors from discrimination in the workplace
- Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
- Ensure that employers must treat all employees equally
- The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
- However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
- The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
- However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds
- However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
Sources:
- https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer/dealing-with-diagnosis/how-to-tell-children.html
- https://www.cancerandcareers.org/en/at-work/legal-and-financial/cancer-and-the-ada-fmla
- https://www.nccn.org/patients/resources/life_with_cancer/talk_to_children.aspx#:~:text=Tell%20your%20children%20how%20much,when%20they%20normally%20see%20you.
- https://www.cancercare.org/publications/22-talking_to_children_when_a_loved_one_has_cancer
- https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/talk-to-children
- https://www.cancerandcareers.org/en/looking-for-work/job-search-disclosure/managing-disclosure-when-looking-for-a-job
- https://www.cancerandcareers.org/en/at-work/employers-managers
- https://www.cancerandcareers.org/en/at-work/coworkers
- https://www.cancerandcareers.org/en/looking-for-work/networking
- https://www.cancer.org/treatment/understanding-your-diagnosis/telling-others-about-your-cancer.html
- https://www.cancerhealth.com/article/tell-someone-cancer
- https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-someone-who-has-cancer
- https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-your-spouse-or-partner-about-cancer
- https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-teens-about-cancer
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
