Tag Archive for: cancer
Managing Body Image Concerns During and After Cancer Treatments
Experiencing changes to your body is typical for someone undergoing cancer treatment. Hair loss, surgery scars, weight loss or gain, struggles with movement and balance, sensitive skin, swelling, and changes in sexual drive are some of the most common changes people with cancer encounter in treatment.
We wish these bodily changes were simply a reminder of the strength and courage a person with cancer possesses as they undergo and complete treatment. But unfortunately, going through these changes can fuel body image issues.
Addressing any body image concerns you have is important because having confidence, high self-esteem, and a positive mindset are integral for getting through what is often a grueling treatment process.
The following tips will help you successfully manage your body image concerns and feel confident again as you navigate cancer treatments.
Feel Your Feelings
It’s difficult for many people to acknowledge their feelings and let them run their course, especially when they’re negative. But it’s essential to do so if you want to manage your body image concerns.
Ignoring how you feel and stuffing your emotions down only guarantees they’ll eventually come to the surface, most likely at a time you aren’t expecting them to. Instead, embrace what you’re feeling, whether it’s anger, confusion, or sadness.
When you’re aware of what you’re feeling and what triggers it, you can find more effective ways to cope. Also, when you ride an emotion out, you’ll see that each one does eventually pass. And you become stronger and more emotionally stable because of it.
Engage in Daily Self-Care
As mentioned above, you need a positive self-image to fuel self-worth and be as confident, healthy, and stress-free as possible. All of which help you better cope with what your body goes through during cancer treatments.
Another great way to gain this positive image of your body and self is to engage in daily self-care. Self-care requires you to learn about yourself and embrace your mind and body in every stage. You eventually learn to love yourself unconditionally and provide what you need to feel good about yourself and your life.
Daily self-care looks different for everyone. A patient undergoing cancer treatments will have to be creative in how they approach self-care. The bodily changes touched on above may limit what you can do physically. But don’t let that stop you.
Simple things like taking your medication every day, spending quality time with your family, writing in a journal, or getting the rest you need each night are forms of self-care. Create a routine that’s mindful of your limitations and represents who you are.
Eat Well and Exercise
Eating well and exercising can also be a part of your self-care routine. They can both be impactful in your quest to manage your body image concerns during and after cancer treatments.
Fueling your body with the right foods and prioritizing physical fitness each day can aid healthy insides. It also helps you get in good shape and create the physique that ignites your confidence and self-esteem.
A balanced diet of fruits, vegetables, proteins, dairy, and grains is ideal. However, you should always follow the diet plans your doctor develops. Be sure to also consult them about the exercises that are appropriate for you during and after your cancer treatments to be safe.
Start Going to Therapy
Sometimes, trying to navigate body image concerns and all that comes with treating cancer on your own isn’t effective. You may need to rely on the help of a professional to really dig into your body image issues, cancer’s role in how you’re feeling, and how to improve your situation.
You can expect the following in your first therapy session:
- Answering questions about yourself and what you’re currently going through.
- The therapist explaining what kind of therapy they do and how they think they can help.
- An opportunity to be open about what’s on your mind and follow-up questions from the therapist.
- A summary of the session and setting goals for future sessions.
Go into therapy with an open mind and a vision for what you want out of it to get the most out of your sessions.
Keep in mind that there are many different kinds of therapy, including cognitive behavioral therapy, yoga therapy, and dialectical behavioral therapy. You can also engage in individual or group therapy, with remote or in-person sessions available. So, tailoring your therapy process to your needs won’t be an issue.
Develop a Support System
As weird as this sounds, it’s a good thing that everyone doesn’t see you the way you see you. If you’re struggling with negative thoughts about your body and image, it’s nice to know that there are people around you who don’t see those negative things as you do.
Instead, they see your strength, beauty, courage, and joy, and remind you of it often. They lift you when you’re feeling down. They keep you focused on what you can control and are with you every step of your treatment process. That’s the power of a good support system.
Make sure you have the right people around you to help you keep your body image issues in check.
You have enough to worry about during and after cancer treatments. How you look shouldn’t be on this list. Because regardless of the changes your body is going through, you’re beautiful. Believe this wholeheartedly and show yourself immeasurable amounts of grace during this time.
Miles is an independent writer with a background in business and passion for tech, health, news, and simply helping people live happy and fulfilled lives. He has lived and traveled all over the United States and continues to expand his awareness and experiences. When he is not writing, he is most likely mountain biking or kicking back with a cup of tea.
Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients?
Dr. Idoroenyi Amanam: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.
How can myeloproliferative neoplasm (MPN) care providers empower their patients? Hematologist-oncologist Dr. Idoroenyi Amanam from City of Hope shares his perspective of his experience with a family member going through cancer. Dr. Amanam explains how that experience helped mold his approach to informing and empowering patients in their cancer journeys.
See More from Empowering Providers to Empower Patients (EPEP)
Related Resources:
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Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients |
Transcript:
Dr. Indoroenyi Amanam:
I know from personal experience, I’ve had a family member who had cancer and had to struggle with therapy and some of the complications associated with therapy. And I felt that her doctor was really good with giving a…giving us an understanding of what was up next for us, giving us an understanding of what the disease meant for her, and really just helped us wrap our heads around what was about to happen. And I think that’s tough when you get a diagnosis and things have to happen very fast. I think we…you’re diagnosed by possibly an ER doctor or a general practitioner. Then you’re sent as a referral to an oncologist who has 30 minutes to talk to you about your diagnosis and ready. Then they scheduled possibly for you to get a port and/or you have to get imaging, or you have to go and get another biopsy, or another procedure.
And a lot of the time that you’re spending at the hospital is really by going to these different appointments, but actually not really talking to anyone about what this really means. And so from my own personal experience of going through it with a family member, I think it’s really important to try to help patients understand what’s really going to happen, what this means for them long term, what the treatments…what the complications are associated with that.
And I know that most of our…most of my colleagues, they do that. And I know that we all want to ensure that our patients have great outcomes, but I do think that having that personal experience does give me some type of connection to patients in possibly in a different way. And so I just want to empower them with understanding that this is something that wasn’t expected. There are a lot of things that have to happen. Here’s what we need to do, and I’m there for you, and I’m there to support you in any way possible that I can to help you get through this.
June 2023 Digital Health Round Up
With the help of technology, this month cancer patients and scientists are making strides in the fight against cancer. A new artificial intelligence chatbot is available to ease cancer patient’s anxiety by answering questions 24 hours a day. Researchers have discovered that turning off a particular gene in T cells can fight cancer. Scientists have found that injecting particular bacteria directly into a cancerous tumor can fight cancer.
New AI ‘Cancer Chatbot’ Provides Patients and Families with 24/7 Support: ‘Empathetic Approach’
Cancer patients looking for quick answers or support between their appointments can now turn to “Dave”, an artificial intelligence chatbot trained to discuss all things related to oncology reports Fox News. The patient’s questions are mostly about potential treatments and the side effects that can be expected. The chatbot provides answers anytime, day or night, to reduce the patient’s anxiety. The AI is designed to respond with empathy and uses seven years of patient and doctor interactions. These interactions are drawn from a social and professional cancer app. To date, over 10,000 cancer patients have used this chatbot. The chatbot also informs patients of the latest technological advances. “Dave” can provide all kinds of information, however if more specific information is needed, patients are directed to call their doctor. Click here for more information.
Knocking Out Gene Triggers Powerful Anti-Cancer Response
Researchers at Baylor College of Medicine have made what they believe is a groundbreaking discovery in the field of cancer research. Their study, published in the Proceedings of the National Academy of Sciences, reveals the importance of a specific gene, SRC-3, in regulating the immune response against cancer reports Science Blog. With the help of gene editing technology, scientists eliminated the SRC-3 gene in T cells. Eliminating this gene caused a lifelong anti-cancer response in animal testing for breast and prostate cancer. Tumors were eliminated without the side effects typically caused by cancer treatments such as chemotherapy. Researchers are doing further testing to use for possible treatment of cancer in humans. In this study, they found that not only were the tumors gone after the injection of the altered T cells, but the tumors did not reoccur over time. Scientists are very hopeful that this research can be used to make better cancer treatments in the future. Click here for more information.
Intratumoral Bacteria as an Injectable Ant-Cancer Treatment
Scientists at the Japan Advanced Institute of Science and Technology in Ishikawa, Japan have developed an anti-cancer treatment that consists of bacteria that are naturally found inside some tumors reports Medgadget. With the help of technology, scientists can separate the bacteria and inject it into the tumor. The bacteria inside the tumor then causes an immune
response to destroy the tumor without any genetic engineering or advanced methods of drug delivery, making it less costly. This method causes less adverse side effects outside the area of the tumor, unlike other treatments. Tumors by nature, have a lower oxygen environment, which makes an ideal environment for bacteria to grow. These intratumoral bacteria get injected into the core of the tumor to cause an immune response. Mouse models using this method show promising results. Click here for more information.
Dana Kaiser is a professional writer and a strong patient advocate, learning from experience during her 22-year career as a nurse.
Empowering Patients: The Advantages of Remote Symptom Monitoring – Let’s AceCancer
As we continue to see advancements in telemedicine and virtual care, remote patient symptom monitoring is becoming increasingly crucial. It is important to highlight the significance of remote patient symptom monitoring and how it can benefit both you and your healthcare team.
Remote patient symptom monitoring involves using technology such as digital health apps to monitor your health status, symptoms, and medical history remotely. While it’s commonly used for patients with chronic conditions, it’s also been shown to be beneficial for cancer patients receiving active care.
Remote patient monitoring is important because it allows your medical team to detect and respond to changes in your health status in real-time, which can lead to early intervention and the prevention of complications. This can ultimately lead to improved health outcomes, reduce hospitalizations, lower healthcare costs, and improved quality of life.
In addition, remote patient monitoring allows you to be more involved in your own care and also enhances your knowledge to make informed decisions about your health. For example, Celeste Jones, a 68-year-old woman, was recently diagnosed with breast cancer. She just finished her first round of chemotherapy and is experiencing side effects such as nausea, fatigue, and difficulty sleeping. Her nurse navigator at her community oncology center recommended a digital health app to help her manage her symptoms. She now uses her app to track her symptoms each day. She can quickly record how she is feeling, capture the severity of her symptoms, and make brief notes about any triggers that may have caused her symptoms.
Lastly, remote patient monitoring can help you reduce your healthcare costs by preventing costly medical interventions and reducing hospitalizations and emergency room visits. Celeste can now manage her symptoms more effectively so that she doesn’t suffer in silence. She can also communicate with her medical team with better detail which can improve her overall quality of life. After using the app for more than 3 cycles of chemo she feels more empowered and in control of her cancer journey. By utilizing digital health apps, you can enhance communication with your healthcare team and take charge of your well-being. These apps facilitate interactive virtual communication between you and your care team, empowering you to improve your health outcomes.
At Acellus, we are thrilled to collaborate with the Patient Empowerment Network’s digital sherpa® program. Through this partnership, we can visit healthcare institutions and provide guided knowledge to older adults regarding the significance of acquiring basic internet, social media, and digital health skills. Acellus Health and Patient Empowerment Network are dedicated to empowering patients and emphasizing the power of knowledge.
In conclusion, remote patient symptom monitoring is absolutely essential in today’s healthcare environment. With technology continuing to advance, remote monitoring will become even more relevant in healthcare delivery, allowing your healthcare providers to provide you with high-quality care no matter where you are. So, don’t wait any longer—activate it today!
Ashley Respress RN, BSN is the Executive Director of Patient Engagement and Head of Health Equity at Acellus Health.
Co-Editors
How to Access Myeloma Financial Resources
How to Access Myeloma Financial Resources from Patient Empowerment Network on Vimeo.
If you need help paying for myeloma care, where do you start? Yu Mee Song, an oncology social worker, reviews several resources, including copay assistance programs and advocacy groups.
Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.
See More From Thrive CAR T-Cell Therapy
Related Resources:
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Transcript:
Katherine Banwell:
Yu Mee, many of the newer myeloma therapies can be quite costly. If a patient is seeking financial support, where would you suggest they start?
Yu Mee Song:
Many of the pharmaceutical companies provide financial assistance if you meet their eligibility criteria.
So, you can start there with – with the help of your oncology social worker. There are other great organizations that provide a significant copay assistance and also reimbursement with your insurance premiums and coinsurance. Some of the ones that we use often are, Leukemia & Lymphoma Society, HealthWell Foundation is another great organization, PAN F is another organization that provide copay assistance, and P-A-F Copay Relief Foundation.
Katherine Banwell:
Okay. And, uh – uh, you as a social worker would have that information for a patient to – to direct them in the – the right path.
Yu Mee Song:
Yes. Yeah. Because they would also need assistance from us and the physician, verifying certain – that they’re in treatment.
Katherine Banwell:
Right. Yeah. That makes sense.
The Value of Myeloma Support Groups and How to Join
The Value of Myeloma Support Groups and How to Join from Patient Empowerment Network on Vimeo.
How might joining a support group benefit you when coping with a myeloma diagnosis? Yu Mee Song, an oncology social worker, discusses the value in peer-to-peer connection and shares tips and resources for finding a support group.
Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.
See More From Thrive CAR T-Cell Therapy
Related Resources:
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Transcript:
Katherine Banwell:
Yu Mee, what is the value of myeloma support groups? And how would you encourage someone to join if they’re hesitant?
Yu Mee Song:
So, it’s – it’s – it’s not for everyone. And you may need to try more than one support group to find the one that’s a good fit for you. But it does provide a sense of belonging and the decreased feeling of isolation, like you’re going through this alone, to be in a group with others who – who kind of – who get you. And I’ve had a lot of people say, you know, it’s really , really hard to talk about this – what I’m going through – with my friends or family they just don’t get it. And it’s so good to see – and we facilitate some groups here for newcomers to join. And as soon as they, you know, speak about something and the whole group chimes in and, yes, we know what you’re going through and give their – share their story and their experience. And it’s so inspiring and encouraging for them.
Katherine Banwell:
Yeah. It’s incredibly valuable.
Yu Mee Song:
They share all sorts of tips on things like side effects and – or how to – how to talk to your doctor about something if you’re uncomfortable bringing it up or, um, even asking for help about, um, you know, for counseling or more emotional support that you may be embarrassed to ask about.
Katherine Banwell:
How would a newly diagnosed myeloma patient find out about something like a peer-group session or peer support?
Yu Mee Song:
There may be some local. But now there are many national organizations that you can tap into. I would start, again, like, ask – speaking with your oncology social worker. But I would start with some of the national organizations like Multiple Myeloma Research Foundation, International Myeloma Foundation, The Leukemia & Lymphoma Society, platforms like this the Patient Empowerment Network, or HealthTree.
So, if you start with any of the big myeloma organizations, they can help guide you. There are patient navigators that can kind of guide to your – provide guidance to what you’re looking for, whether it’s peer-to-peer support, support group, or other resources.
Advice for Myeloma Patients Undergoing CAR T-Cell Therapy
Advice for Myeloma Patients Undergoing CAR T-Cell Therapy from Patient Empowerment Network on Vimeo.
How can patients undergoing CAR T-cell therapy be prepared? Yu Mee Song, an oncology social worker, shares three key pieces of advice for patients and care partners getting ready for CAR T-cell therapy.
Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.
See More From Thrive CAR T-Cell Therapy
Related Resources:
Considering CAR T-Cell Therapy For Myeloma? Key Questions to Ask Your Doctor. |
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Transcript:
Katherine Banwell:
For patients who are considering CAR T-cell therapy, what three key pieces of advice would you have for them?
Yu Mee Song:
I think it’s really important to have someone accompany you to maybe the initial consultation.
Or if they can’t physically be with you to have them available by phone or to listen in on a conference call because there’s so much information that’s provided. It’s – it’s a multi-step, complicated process, so it’s good to have a – another set of ears helping you to stay organized, take notes maybe, keep a calendar.
Another thing is to plan ahead. Plan for time away from work. You may need to apply for FMLA. If you are a caregiver of young children or older parents, make arrangements for that. Especially if you live a distance from the treatment center, you may need to stay close to the hospital for a couple of weeks after your discharge for your CAR T-cell infusion.
Katherine Banwell:
Yeah.
Yu Mee Song:
And then I would say another tip is to stay connected to home, so there are many online forums that you can use to – for – for your friends and family to provide support in that way and for you to share information. And maybe bring pictures or something cozy from home to remind you of home because you will be – be away for some time.
360 Myeloma Care | How Can a Social Worker Help?
360 Myeloma Care | How Can a Social Worker Help? from Patient Empowerment Network on Vimeo.
When coping with a myeloma diagnosis, how can a social worker support you in your care? Yu Mee Song provides an overview of the role of a social worker in myeloma care and discusses the importance of speaking up about emotional issues and beyond.
Yu Mee Song, LCSW, OSW-C is a Social Work Program Coordinator at the Center of Excellence for Multiple Myeloma Program at Mount Sinai Hospital. Learn more about Yu Mee Song.
See More From Thrive CAR T-Cell Therapy
Related Resources:
How Can A Social Worker Help CAR T-Cell Therapy Care Partners? |
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Transcript:
Yu Mee Song:
My name is Yu Mee Song. I am, a social work program coordinator in the Multiple Myeloma Program at Mount Sinai Hospital.
Katherine Banwell:
Excellent.
Yu Mee Song:
Thank you for having me.
Katherine Banwell:
Thank you for joining us. Can you tell us more about the role of a social worker as it relates to myeloma care?
Yu Mee Song:
First of all, I feel very, very fortunate to be working in the myeloma program amongst world-renowned myeloma specialists with a team of nurse practitioners, nurses, transplant and CAR T coordinators, patient navigators.
And our social work team is a team of five. And we can receive referrals from any of these team members at any point in a patient’s journey, from the moment of diagnosis throughout their treatment trajectory in both the inpatient and the outpatient settings for emotional needs and support to practical needs.
Katherine Banwell:
Yu Mee, when a myeloma patient comes to see you for the first time, what are some common concerns they might be having?
Yu Mee Song:
That really depends on the – on the patient and – and where they are in their life situation when they’re diagnosed. You know, if they’re working, they may have considerations about reducing work or not working or not being able to. A lot of practical concerns, maybe the first issue that they have to deal with such as transportation and getting to and from the cancer center now three times a week, or navigating the healthcare system for the first time in their life, and insurance or just coping with the fact that you’re now dealing with the diagnosis of myeloma and what does that mean and how are you adjusting to this? So, it really varies.
Katherine Banwell:
If patients are facing emotional issues, why is important for them to speak about it? And – and what support is available for them?
Yu Mee Song:
That’s – that’s a great question that I always like to stress the importance of to the patients and also the caregivers because they’re usually the ones that first notice any changes, maybe in their mood or the emotional state.
If you’re holding things in, you’re, you know, feeling like you’re alone in this fight or your fears of what might happen, that can increase your anxiety, it might lead to depression.
So, it’s really important to speak about it, ask your care team about it. It may be as simple as, you know, that’s a side effect of a medication that you’re on, and maybe we can reduce the dose or maybe we can tell you to take it at a different time of day.
And that’s so helpful to know that.
There may be help for you. You may be referred to a mental health professional, support groups, and would also improve your – your relationships within your family because obviously your emotional state it’s – it, you know, myeloma is just not impacting you but all of the loved – people around you.
Katherine Banwell:
That leads us into the next question. Some patients don’t have a partner to help them go through this – this journey with their myeloma. So, do you have any suggestions for how myeloma patients can find support and where?
Yu Mee Song:
I would say, first start with asking your care team or ask – speaking with an oncology social worker. Support doesn’t necessarily mean your – your partner. It can be in the form of support groups that are either in-person, there are many groups online.
It could be a peer – one-on-one peer support. Someone who’s gone through what you’ve gone through.
CAR T-Cell Therapy Care Partners | What Do You Need to Know About the Process?
CAR T-Cell Therapy Care Partners | What Do You Need to Know About the Process? from Patient Empowerment Network on Vimeo.
What is the role of the care partner when a loved one is undergoing CAR T-cell therapy? Registered nurse and transplant coordinator Sarah Meissner is joined by Adrienne, a care partner, as they discuss the importance of care partners in the CAR T-cell therapy process. They review key questions to ask the healthcare team, explain patient side effects to monitor for, and share resources that can help support care partners throughout their loved one’s recovery period.
Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.
See More from The Care Partner Toolkit: CAR T-Cell Therapy
Related Resources:
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What Resources Are Available for CAR T-Cell Therapy Care Partners? |
Are You A CAR T-Cell Therapy Care Partner? Why You Should Ask for Help. |
Transcript:
Katherine Banwell:
Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss the role that care partners play in supporting their loved ones who are going through CAR T-cell therapy. Before we meet our guest, let’s review a few important details. The reminder email you received about this webinar contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the program. At the end of this webinar, you will receive a link to a program survey. This will allow you to provide feedback about your experience today and it will help us plan future webinars.
Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.
Well, let’s meet our guest today. Joining me is Sarah Meissner. Sarah, welcome. Would you please introduce yourself?
Sarah Meissner:
Hi. My name is Sarah Meissner. I am a transplant and CAR T coordinator at the Colorado Blood Cancer Institute in Denver. And I have been working with blood cancer patients for 13 years and in my current role for 8.
Katherine:
Excellent. Thank you so much for being with us today. And here to share the care partner perspective is Adrienne. Adrienne, welcome to the program.
Adrienne:
Thank you for having me.
Katherine:
So, let’s begin by learning more about Sarah’s role. Sarah, can you explain what you do as a transplant coordinator at CBCI?
Sarah Meissner:
Of course. So, I like to say that as a coordinator, I am kind of the travel agent of the CAR T process. So, I meet with the patients when they are determined to be a candidate for CAR T-cell therapy.
And I act as kind of the intermediary between the patient and the care team. I help them get set up for all of their appointments as well as provide education for what’s going to be occurring.
Katherine:
Okay. So, when someone is undergoing CAR T-cell therapy, who are the essential members on their healthcare team besides you?
Sarah Meissner:
We have a pretty big care team. So, of course, we have the physician who is kind of at the helm for determining the care plan. We also have financial coordinators, social workers, dieticians, as well as the nursing team who will be providing the care to the patient.
Katherine:
So, how many people could be on a team?
Sarah Meissner:
It could be as many as 10. It just depends on the individual patient’s needs and how different people can help.
Katherine:
How do you, specifically, work with CAR T-cell patients and care partners?
Sarah Meissner:
So, I am their main contact during the process. So, any questions that come up that I can help with, I’m there via phone, email, in person meetings. I also am big in education. So, sitting with the patient when they’re in clinic and helping them understand what this treatment is, why we’re doing it, what they can expect and just helping them through the process.
Katherine:
Great. Adrienne, I’d like to turn to now to you and find out more about your experience. How did all of this begin for you and your husband?
Adrienne:
This all began with my husband and I, we both are very active, and we work out a lot. And he had some pain in his lower back and his groin area.
And we started going to physical therapy and a chiropractor. And the chiropractor was doing besides just chiropractic, he also did physical therapy stuff, too. His pain wasn’t getting any better. And after a few months, he called to get an MRI and that’s when they found his myeloma was in the MRI. Because of his age, he was diagnosed in 2018 at I’m trying to think how old he was. He was around 37. So, it was a very early diagnosis maybe but he definitely was on the young side of having this kind of cancer. So, that’s how we found out.
And then after that, it was just kind of a whirlwind on how we would care for him and what we needed to do to get him better.
Katherine:
Yeah. It must have been hard.
Adrienne:
Yeah. It was hard.
Katherine:
What was the process like for you as his main care partner?
Adrienne:
My role once he was diagnosed was just to do everything I could to find out. We didn’t really know about the disease before. So, to find out what the best care for him was. We did a lot of research. We ended up going to several doctors before deciding what treatment plan we were going to go with.
And then, he had some ups and downs, some failed treatments. And that’s where we went into CAR T, because we had so many failed treatments before.
Katherine:
Did you feel like you were doing a lot of research? Were you doing a lot of homework Googling stuff?
Adrienne:
Well, kind of trying to but we were also told not to do that too much, because it’s always the worst-case scenario online. But we did that somewhat and we got as much information from each institute we went to. And we went to, like I said, we went through three, and then we ended up at CBCI at the end where we are now.
So, we started to discover that the first few lines of treatment were pretty standard. When you’re put into a situation where you find out your spouse has cancer, all you want to do is you want to find the magic miracle that’s going to cure them. And we did have to just go through the steps of standard care first. And we’re hoping that this CAR T-cell works. It’s working really well right now.
Katherine:
I was just going to ask you, how are you and your husband doing now?
Adrienne:
We’re doing pretty good. He’s still very tired. He’s, actually, taking a nap right now. And he has ups and downs. He definitely feels a lot better overall. He is getting back to normal life. But there are times where he just doesn’t feel quite right and has some physical pain and some cognitive issues.
And we don’t really know if that’s from CAR T alone or if it’s also just from the last five years of having chemo and bone marrow transplant and all of the care before the CAR T-cell.
Katherine:
Sarah, can you answer that question about cognitive difficulties that Adrienne’s husband is having?
Sarah Meissner:
Yeah. So, it is pretty common to have what we call chemo brain after any treatment really. And in the case of Adrienne’s husband, he’s had several rounds of chemotherapy going into the CAR T treatment. So, it can be kind of an accumulative effect of all of that. And it is something that people struggle with post-treatment.
It’s kind of a brain fog, not remembering things. So, working with the team and neurologists can be helpful in some cases. So, that is something that we see.
Katherine:
Well, let’s shift the conversation a bit to learn more about how the CAR T-cell therapy process works. Sarah, would you walk us through the typical path?
Sarah Meissner:
Of course. So, it is a pretty protracted treatment. It starts off when the patient is determined to be a CAR T-cell candidate.
At that point, we are looking at getting testing to confirm that eligibility so based off of disease process as well as performance status and organ function. So, there are a series of tests that are done, and then those are sent to the insurance company in order to obtain authorization for treatment. After we have received the authorization, then the patient consents for treatment with their physician where we review the plan of care, side effects, risks, benefits, all of that. And then the T-cell collection takes place. So, this is a one day, outpatient procedure. We put a temporary catheter into the patient that goes into their neck and we use this to collect the T cells.
So, the patient gets hooked up to an apheresis machine, which kind of looks like a dialysis machine. And it filters the patient’s blood.
It takes blood out of the patient’s body, goes into the machine into a giant centrifuge where the blood is separated into different densities. And then, the T-cells are extracted from the density of the blood where it is and then, taken out and collected in a bag. This is a three- to four-hour process usually and then, when we are finished, we are left with a bag of T cells. Those T cells are then shipped off to a manufacturing site for the specific pharmaceutical company that is going to be manufacturing the patient’s T-cells. And that can take anywhere from three to eight weeks depending on the product.
During this time period, most patients have an active blood cancer that is going to need some treatment while we’re waiting for those cells. So, it is something we call bridging therapy. They may or may not receive that depending on what’s going on in their case.
After the T cells are manufactured, they get shipped back to our center as a frozen block. And we have the patient come back in. They get a few days of chemotherapy. We call this lymphodepleting chemotherapy. So, this isn’t chemo that’s meant to treat the patient’s disease but to suppress their immune system so that when we put these CAR T cells back into their body, the patient’s immune system doesn’t fight them off before they can do their job. So, that’s typically two or three days depending on which products the patient is getting and which disease is being treated.
Then, they get a few days off and then, that frozen block of cells is brought out of the freezer, brought to the patient, thawed in a water bath that looks kind of like a hot dog cooker.
Katherine:
That’s an odd image.
Sarah Meissner:
There is water in there that’s heated to body temperature and the frozen block of cells is thawed.
And then, those cells are infused into the patient’s body and go to work to fight the patient’s cancer.
Katherine:
What is the care partner’s role in helping the patient through this process? And why are care partners so critical for a patient’s recovery?
Sarah Meissner:
So, the care partner is a huge part of this process. After the cells are infused, there is a 30-day close monitoring period. And it’s a requirement for our center that the patient have a 24/7 caregiver during that time. There are a lot of side effects that can happen, and the patient is not going to be able to drive for two months.
So, they need somebody with them at all times to be monitoring for these symptoms as well as bringing them to their appointments, helping them with their medications, day-to-day stuff at home as well.
Katherine:
Adrienne, if you don’t mind, what sort of side effects did your husband have?
Adrienne:
He had from the immunosuppressing chemotherapy, he had really low numbers for a while and that just made him feel pretty bad. And he didn’t have any really bad side effects where we had to go to the hospital. Well, I guess we did a few times. He had just a little bit of fever, which you have to report and make sure that it’s okay.
So, we did have to go twice. But it really didn’t end up being anything too bad. He did have a fall down the stairs at our house. So, if we did it different, I think because we had to be there every day for two weeks and the monitoring, I think that we would probably have rented a hotel that didn’t have these stairs just because he’s used to going up and down the stairs, but I don’t know if he just lost his footing. But it was extremely scary with everything else that he was going through. And that might have been part of the cognitive thing. I feel like most of his side effects, actually, started hitting months after the cognitive things.
But the stress was more on just caring for him and making sure that he was okay and just being ready just in case something happened.
Katherine:
Yeah. It’s like being on high alert 24/7.
Adrienne:
Correct.
Katherine:
Sarah, could you describe some of the common side effects?
Sarah Meissner:
Yeah. So, there are two main sets of side effects that we’re looking for with CAR T therapy. The first is something called cytokine release syndrome. So, this happens when the CAR T cells latch onto those cancer cells and kill them and stuff gets put out into the patient’s blood stream. That can cause what’s called a cytokine response. And it’s, basically, proteins that cause inflammation. So, common side effects that we see with that are fever, low blood pressure, high heart rate.
Some people need some oxygen. It looks very similar to what we would see in sepsis or a severe infection. The good news about that is there is a medication that’s very effective in treating cytokine release syndrome. And so, that’s why it’s important for the caregiver to notice these things and bring them into the hospital so they can get that treatment right away. The other set of side effects is something called neurotoxicity. So, if you think of the brain as a group of wires that is sending signals throughout the body, with neurotoxicity, those wires can kind of get jumbled. They’re not necessarily cut. This isn’t an irreversible thing.
They get jumbled and can kind of mix up those signals. So, we can see patients that are confused. Patients can have seizures. We start everybody on anti-seizure medication as a prevention method. They can get a tremor and we can see changes in their handwriting.
So, we assess for this twice a day during those first 14 days by asking them a simple set of five questions. To name certain objects, to count back from 100 by 10, ask them what day it is, that kind of stuff and then, to write out a sentence. And we can see subtle changes in that functioning in the handwriting. So, this like the cytokine release syndrome, if we start to see it, there are medications that we can use to treat it. We usually put people in the hospital for a little closer monitoring. But these are things that the caregiver usually will catch onto before the care team because they know them best.
And they can catch onto those subtle changes maybe in their personality or little confusion or stuff like that.
Katherine:
Well, that leads me to the next question, which is what sorts of questions should care partners be asking their team?
Sarah Meissner:
Yeah, definitely.
So, they should be asking what they should be looking for, what side effects would constitute something that they need to report. They should be asking, “Who are we reporting to, what phone number or who are we reporting these things to?” Those are the main things to be looking for. We use a home monitoring system at our center. So, maybe some specific questions about monitoring dependent on your center and how they’re having the caregiver look for these side effects.
Katherine:
Adrienne, based on your experience, are there any questions that you would recommend care partners ask their healthcare team?
Adrienne:
I think that it’s kind of one of those things where you have to experience it. I feel like I did have all of my questions answered.
But at the same time, you don’t really know what you’re getting into until it’s actually happening.
Katherine:
Right.
Adrienne: But back to the cytokine syndrome, my husband did have this effect where he had the high fever, and that’s why we went in. And we did get the Toci dose [tocilizumab], which is a special medicine that kind of calms the inflammation down. So, I think that some of the questions that I would have pretty much are what to expect but I was given that. And I think maybe it would be good to meet other people that had gone through this before you’re actually going through it.
I didn’t have that luxury, because my husband was only the second person in our hospital to do it. But to know what’s going on from another caregiver’s perspective would be nice.
Katherine:
Yeah. We’re going to talk about resources in a moment. But, Sarah, I wanted to ask you, “What are some of the common issues that care partners face?”
Sarah Meissner:
I think this is a very stressful time here. Your loved one is not feeling well, and there are these potential side effects. And so, that can cause a lot of stress on caregivers that they’re kind of the one in charge. They’re looking for these things. Of course, they want the best for their loved one. So, it can be a very stressful time.
Frequent appointments. Here in Denver, we have terrible traffic. So, if people live far away from the center, it’s fighting rush hour every morning to get here. That can add a lot of stress as well as if you have other things going on at home, too, other family members who need you, it’s a lot to take on.
Katherine:
Adrienne, what experiences or issues did you have in taking care of your husband?
Adrienne:
Well, we do have a child. She was 2 at the time. So, I did have to plan childcare pretty much every day for two weeks, which I am fortunate to have lots of friends and family here in Denver, so I was able to get that covered.
Katherine:
It’s a lot of responsibility for you.
It’s a higher level of responsibility, I guess, right, because you’re taking care of your child and now, your husband is very sick. And you want to make sure that everyone’s needs are being met.
Adrienne:
Right. And driving, like Sarah had said, the driving was an issue, because it was so far for us. There are potholes and with the little bit of change in mood and not feeling well, it was hard for him to be in the car so long and not getting to drive himself. So, I think that was not the best experience. I think if we did it next time, we would try and just be closer to the hospital.
And for me to take care of everybody else, I did make sure that I would try and work out and not being able to leave the house with him. So I work out in the living room just to get some of my own stress out, or I would have somebody come and watch him if I really wanted to go to a class to work out. And like I said before, we were very lucky to have his parents that live in town and then my mother and my sister. So, that’s something that is important to have a network of people to help you because I don’t know, depending on what you have on your plate. I think it would be almost impossible to do it all by yourself, especially if you have to work or you have children to take care of.
So, that’s some advice or what I’ve learned from this experience.
Katherine:
Yeah. Was it hard for you to take time for yourself? Did you feel guilty? I know a lot of people think “Oh, I need to focus all of my attention on my child or my sick spouse.” It can be difficult to say to yourself, “I really need to take half an hour or an hour,” and then, find somebody to help you out with the caregiving.
Adrienne:
Yes. I did find it difficult. And you just know that there is going to be an end in sight. You think,”If I can just last through the month so I did sacrifice.” But at the same time, my main concern was that my husband would get through this. So, I did feel a little guilty. And I would get a little bit of time.
But me, personally, I just wanted to push through that month and especially that first two weeks. And then, I knew that I would be back to doing the things I love.
Katherine:
Yes. Rather than looking too far forward, I guess it’s trying to get through every day each day. Yeah. I’m going to switch back to ask Sarah a question. Sarah, why is it so important that care partners communicate any issues with their healthcare team?
Sarah Meissner:
So, those side effects that we talked about, there are drugs that we can use to treat them, but they work best when we can get those drugs in as soon as possible. So, if we’re starting to see signs of cytokine release syndrome, we want to get that tocilizumab (Actemra) infused in the patient within two hours.
So, it’s really important that we know that these side effects are popping up so that we can treat it appropriately.
Katherine:
All right. We spoke about support a few moments ago. Sarah, this is, obviously, a very taxing experience for everyone, the patient and care partner. Where can care partners find support during this time looking outside family members and relatives nearby? What other resources are available?
Sarah Meissner:
Absolutely. I would encourage people to work with their local psychosocial team first. There may be support groups within the program that they’re receiving treatment at that could be helpful or, like Adrienne talked about, other patients or caregivers who have gone through this that they can be connected with.
There is also some great support resources through The Leukemia & Lymphoma Society. They do have caregiver support. They have patient support, connections with patients, and that kind of stuff. So, that is another good place to look as well as the different manufacturing groups that make these CAR T cells do have patient support groups as well. So, maybe some more information, maybe some caregiver resources. They’re all a little bit different but that would be another good place to look.
Katherine:
Adrienne, did you find any resources that you would recommend?
Adrienne:
Well, I used, and not on particularly CAR T cell but I do have one in there, but Facebook does have closed groups that you can join.
I did this for his bone marrow transplant. And I do get a lot of support on that particular one. It’s for spouses and caregivers in particular. So, look for that and there is one on CAR T cell but for multiple myeloma. But at the time, it was very new so there wasn’t a lot of back and forth on there. But you can really connect with people, and, of course, it’s not a substitute for any kind of medical advice. But it is nice to talk to people that are going through the same thing, especially with his bone marrow transplant. There were other caregivers that were, actually, doing it at the same time. So, that was kind of like a reassuring thing to have this little group of people that we knew were all doing it at the same time.
Katherine:
Yeah. That’s great support. Sarah, how can care partners make sure they’re taking care of themselves? What can they be doing?
Sarah Meissner:
I think it’s hard going through this process. The focus is so much on the patient and what they’re going through. And caregivers often forget that they have needs, too. So, taking the time to look within and recognize when you’re feeling stressed and maybe you need some support. Reaching out to friends and family is a great thing if you have that option. If you have the option to have somebody come in and hang out with the patient for a period of time, so you can go to a work out class or you can just go grab some groceries or go do something for yourself and have a few minutes that you’re not having to worry about watching the patient can be really a great thing for people.
Sometimes, if patients don’t have other support, caregivers will take the time that the patient is in clinic and being watched by the care team to maybe go run a quick errand or do something. And that’s definitely an option as well.
Katherine:
Adrienne, we talked about this, but do you have any advice for care partners as they begin the process?
Adrienne:
Yes. I would just say that it’s only temporary and that the first two weeks is really intense, but it definitely gets better. And just to keep your eyes peeled on all of those little things that might not be right, because it’s really important to get them back into clinic if they need it and to take a little time for yourself.
Katherine:
Yeah. Well, before we end the program, I’d like to get final thoughts from both of you. What message do you want to leave care partners with? Adrienne, let’s start with you. You may have already answered this question just a moment ago.
Adrienne:
The message that I think that we would like to give, my husband, too, is that this is a lot of work, but he has had a very successful remission. And it’s very promising, and we’re excited to have a long future with this. It’s much better than having chemo every week.
And it’s improved his quality of life. So, I think that as a caregiver, it’s a lot of work, but it’s definitely worth the work, because the end result, hopefully, will be life-changing.
Katherine:
Yeah. Sarah, do you have anything to add? What information would you like to leave care partners with?
Sarah Meissner:
Yeah. The care partners are such a crucial part of this process. Without them, we can’t provide this treatment. So, it’s a very important role, and we are very thankful that you are willing to do this for your loved one so that we can give them this treatment and, hopefully, get them into remission and have great results from that. So, make sure that you take the time that you need to be able to be there for your loved one and, again, just thank you for being willing to do this.
Katherine:
Well, Sarah and Adrienne, thank you so much for joining us today. This has been really great to talk to you both.
Sarah Meissner:
Thank you.
Adrienne:
Thank you.
Katherine:
And thank you to all of our partners. If you’d like to watch this webinar again, there will be replay available soon. You’ll receive an email when it’s ready. Also, don’t forget to take the survey immediately following this webinar. It will help us as we plan programs in the future. To access tools to help you become a proactive patient, visit Powerfulpatients.org. I’m Katherine Banwell.
Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter
Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter from Patient Empowerment Network on Vimeo.
Lisa, Thomas, Donna and Diana all share what keeps them laughing. From TED Talks to TikTok videos—Thomas shares it’s always best to start your day with something positive.
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Transcript:
Lisa Hatfield:
I wrote down two sources of laughter right now, and just so people are watching this, something that they can look up, or a positivity or something that there’s just like having a low day go onto this activity guide or watch this thing, two sources of positivity or laughter or humor from any one of you want to start with, Diana?
Diana:
Number one would be my book, no I’m kidding. You know what I have found? Every morning I have since retired. And every morning since I’ve retired, I get on Facebook and TikTok and I look at Penny the talking cat. I love Penny the talking cat videos, it’s just stupid, stupid humor. I also adopted a new kitten and he brings me joy, such joy on the silly stuff that he does, so I think whatever you can find that brings you humor, do it every day. And start your day with it.
Lisa Hatfield:
That’s a good tip. Start your day with it. Yeah, getting off on the right foot. Donna, how about you?
Donna:
Well, I mentioned it a little bit earlier, one of the comedians that I really love, because he always talks about family issues, Italian Jewish issues all the time, back and forth, back and forth. That’s Sebastian Maniscalo.
He is so funny, and I watched those videos either on Facebook on TikTok, on YouTube, whatever, and he relates to everything that you could think of, whether it’s growing up in situations that are awkward, whether it’s awkwardness at holidays, whether it’s the awkwardness to going out with his children or his wife or whatever, so it’s all family-related. And it just makes me laugh. It puts me in a different place and I laugh and I find it very relaxing, and I just say, wow, I can relate to that or whatever. But he makes me laugh all the time cause it’s his voice that says mannerism, and the subject matter is always great, and it’s never raunchy actually. Never.
Lisa Hatfield:
That’s nice. Yeah.
Diana:
This January, I broke my foot. I had a stress factor, my foot, so I had to sit on the couch for six weeks, I couldn’t go to the gym, I couldn’t walk 12000 steps a day, which is what I typically do. I watched all 178 episodes of Seinfeld over those six weeks and it’s what kept me going.
Lisa Hatfield:
Awesome. So, Thomas, what are two sources or Donna were you done? Thomas, a couple of sources of inspiration or humor for you?
Thomas:
We all have this in common is we all go to TikTok in the morning and just look at something to get our day going. So that’s one of the things that I do. And then the other thing is, I give calls, sometimes I call them or via text to some… My guys that I ride my bike with, one of the guys are so animated with every story that he tells, he makes you laugh even when you don’t even want to laugh because of how he animates the story. So, between him and what I see on TikTok and social media, that really brightens my day up in the morning before I start it. And it has to be something positive, anything negative, I try to scroll past that even so fast that it doesn’t even get into my brain.
Lisa Hatfield:
That’s awesome. Yeah, avoid the negative. I like to look up every once in a while, when I’m feeling just… I need a good laugh. I look up YouTube videos of babies laughing, for some reason, you see it, there was a video with Dad Laughing, the baby with her sneezing and the baby would have this huge belly laugh that just got me laughing pretty good, and I also like… There’s a podcast just for positivity that I have listened to, the guy’s name is Shawn. I think it’s pronounced Achor, it’s like anchor without the n, but he talked about… He studied happiness, I think he taught at Harvard for a little while, and he does these experiments and I think would be really funny to watch, but when he goes in and talks to groups he tells everybody to pair up two different… Everybody’s in a pair, and then he’s okay, somebody’s number one, and the pair, somebody’s number two, it doesn’t matter who’s which number right now, and then he proceeds to tell people for the next seven seconds, I want you to control your behavior, so I’m going to tell you to do something for seven seconds, you can’t partner with somebody you’re married, you can’t be paired up with somebody that you know really well, so what he does is he says okay, all the number ones…
I want you to go neutral, go blank. No emotion, nothing. Number two, for seven seconds, I want you to stare deeply and warmly into the eyes of number one, now mind you, these might be complete strangers and both of them are supposed to not… They’re supposed to totally control their behavior, so for seven seconds they do that to stop, and then he reverses it, so number two is now number one, and vice versa is supposed to show no emotion and not smile, not laugh, and he said, Success is by controlling your behavior failure is you did something, usually laughing or smiling when somebody’s gazing deeply in your eyes and you’re supposed to be totally neutral. He does these experiments… He said 85% to 90% of people fail because they cannot control their emotions, they can’t help, but they’ll laugh or they’ll giggle or whatever, and he said it’s universal. It really predicts nothing, but it’s universal, it happens every time, but he talks a lot about the mirror neurons that we have, you know, if somebody’s yawning, we feel like we have to, Jon, but smiling and laughter is sort of contagious because of these mirror neurons.
So, if one person starts laughing at the partner, the other one does too, and it’s just kind of one of his funny experiments, so that would be… I guess my take away is this podcast by… Or a couple of podcasts by Sean Achor. They’re funny to listen to. He describes him, he’s just super funny to hear talking anyway, he had some TED talks out there. So those are my two go-tos.
How Have You Maintained Positivity in Uncomfortable Situations?
How Have You Maintained Positivity in Uncomfortable Situations? from Patient Empowerment Network on Vimeo.
Despite feeling down or just not feeling well there are time when you have to show up for others whether it be family or friends. Lisa and Thomas, living with Myeloma along with Donna and Diana living with NHL share times when they’ve had to show up for others even when not feeling like their best selves.
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Transcript:
Lisa Hatfield:
Have any of you ever felt the need to be positive even when you might feel like crap, just so others don’t feel awkward, just so other people don’t feel uncomfortable? So, we’ll go around we’ll start from… I’ll start from my left, Donna, Diana and then Thomas if you have any of those… Those instances, what do you do about that, Donna?
Donna:
My situation was, I literally felt like crap, I was sleeping 10, 14 hours a day. My kids came home for Thanksgiving and I’m like, let’s just order from Whole Foods or from Jewel, we’ll get the complete meal, and they were like, No Mom, I really want to cook Thanksgiving will help you, we’ll do everything, and you can just supervise and… So, our meal was set up, we sat down at the table, my children made the stuffing… My son made the mashed potatoes and the stuffing, and my daughter made the gravy, we cooked the turkey, everything was cold… I mean literally cold, but we all sat there with a few friends, and I just wanted to just go in the bedroom and go to sleep. But I put up a good front. I was so happy we did it, they were so proud of themselves to make the meal for me that it brings tears to my eyes now, because they just wanted to have something normal, and for me, it was very difficult, but it was wonderful just to sit there and I kept putting my hand behind my back or maybe sit up straight because I was slumping and I was ready to fall asleep, but I’m telling you that situation for me, I still remember, and we talk about it every Thanksgiving, about what a wonderful meal it was even though it was the coldest Turkey and the coldest mashed potatoes I ever ate. The gravy was already curdling because it was so cold. It was just unbelievable.
So, it’s a great experience. And it meant a lot to all of us really.
Lisa Hatfield:
Well, now, it kind of did turn into a positive because you can talk about it with a smile and kind of laugh about it. Yeah. Sometimes we forge ahead. It turns into that sometimes it doesn’t, but thankfully, the cold mashed potatoes turned into a positive or something to laugh about later. Exactly. Yeah. Diana, do you have any thoughts on that?
Diana:
Honestly, I don’t… I had the opposite situation that Donna did. I felt so bad leading up to my diagnosis, not knowing what was wrong with me, that once I started my treatment, I felt better on chemo. Who does that? I don’t know, but… So, when I took advantage of short-term disability, my immune system was compromised. This was well before covid, so I was in a great place once covid came because I knew exactly what to do and I had enough sanitizer to get through it, but going through treatment, I would always just put on my positive attitude before I left the house, and it just stayed with me and I surrounded myself with positive people, including the people who are treating me.
Lisa Hatfield:
Yeah, good to hear that. Thomas, you ever feel like I have to put on a happy face even when you don’t feel like it?
Thomas:
I do… As I mentioned earlier, maybe off-camera, we are always being watched and being a pillar in the community. I know that when I go to the clinic or when I go out in public, I’ll run into somebody that has seen me on an interview or know I have myeloma or maybe a patient that’s going through the exact same thing, and some of those days I am at my worst, I feel bad, but they will never know because they will always see the same happy go lucky Thomas that they see on video in the clinic or on the posts that I post on my social media. Always smiling. So, it’s something that I deal with all the time, but what I do is I do have an outlet. I have you guys… Because I always feel that I can talk to somebody that has been through some of the same things I’ve been through, they get an understanding of what I’m dealing with, instead of getting the generic… I understand answer. It’s something that happens more than a lot of people like to talk about, but it happens all the time.
Lisa Hatfield:
Would you say sometimes you do go out into the community; I just have to ask… And this is kind of personal. Do you feel like that’s sort of a burden to put on a happy face, or do you just immediately go to your outlet of connecting with others and working out to let it not feel like a burden?
Thomas:
I won’t look at it as a burden because I know that it’s inspiration to them. You know as long as I can inspire somebody else that’s dealing with their disease, or not even a disease, I hear it all the time, I’m in the gym, and people that’s not even diagnosed with cancer or any other disease, they look at me and say, Man, I know what you’ve been through, and I see you in here smiling and laughing and talking and working out, and I’m complaining that I had to get up and come in the gym this morning. So now that I’m in the gym and I see your exercising, you’ve really changed my day, but unbeknownst them that I’m on dexamethasone, I’m wide open… I have scar tissue from some of the areas, scar tissue pain from some of the areas I’ve had radiation. But no one will ever know that.
Has Toxic Positivity Played a Role in Your Cancer Journey?
Has Toxic Positivity Played a Role in Your Cancer Journey? from Patient Empowerment Network on Vimeo.
Toxic positivity is a buzzword that has been thrown around lately. Lisa, Thomas, Donna and Diana all share their thoughts on toxic positivity and how it plays a role in their lives now.
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Transcript:
Lisa Hatfield:
So, talking about being positive and optimistic, and I don’t know if any of you heard of the phrase, it’s kind of a trendy buzzword or buzz phrase, toxic positivity, and I’ve only heard it once, and somebody had mentioned to me that I was too Pollyanna-ish with my diagnosis, and I think we’ve all mentioned it, it’s not… We can be positive, but it doesn’t mean we don’t have days that are a little bit darker or a little… We feel a little more down… It’s just that we tend to focus more on the positives when they’re there… Which they’re there a lot of the time, I mean, post there a lot of time. So, I actually had to look this up because I didn’t know the best definition of toxic positivity, and then I had… I brought up here, I want your thoughts on this. So this is from Psychology Today, I’m not sure if that’s a legitimate source, but they describe or Psychology Today explains toxic positivity as the act of avoiding, suppressing or rejecting negative emotions or experiences, this may take the form of denying your own emotions or someone else, denying your emotions insisting on positive thinking instead, so people say things, Well, look on the bright side, you get a lot of casseroles when you have cancer, which is true, and that’s great, but sometimes you’re not in the mood to hear that.
Toxic positivity. What are your thoughts on that? To me, it almost sounds like maybe the positivity isn’t what’s toxic, it’s just people are in denial or avoidance of a situation, which is… I think I’m not a professional, but it seems pretty natural, especially when you’re first diagnosed, have you ever experienced toxic positivity or thought about it, or know anything about it, heard about it? Diana?
Diana:
I mean like you, I had to look it up. When it was brought to my attention. And like you, I tend to take the positive route because that’s what’s best for me, but it’s okay not to be okay also, and I do acknowledge that in my book, there are some serious excerpts and there’s some serious quotes in the book, but I just… I think each person is different, and I appreciate it when people relate it to me in a positive manner, you know, I knew they were lying when they said, you look great bald, you have a great head. I’m like I really don’t, I really don’t but I still wonder to this day, I watch football and I’m looking at these guys with this long hair underneath their helmet, I’m like, why, if you’re a man, I would shave my head every day. But I’m totally going off subject here, but I just think it’s each individual person and how you respond to being positive, I think positivity begets positivity, you know humor begets humor. And kindness begets kindness. So, I don’t know, I’m a positive person.
Lisa Hatfield:
And we know that about you. Yeah, that’s awesome. And I think we feed off of that too, I know when we were all together in our meetings working on projects your positivity, cracking jokes and Thomas making us laugh for a variety of reasons every 10 minutes, it helped all of us feel better. I wasn’t in the best place when I arrived on that trip, having just gotten my bone marrow biopsy results, but when you were around people that feel good and act that way… You can’t help but feel like, Oh, this is awesome, this is great. It just changes your perspective and outlook. Donna, I think you were going to say something a minute ago. Do you remember? I thought you raised your hand.
Donna:
I was going to say something. I think for me, because I tend to be a pretty serious person, but I do like humor. After being diagnosed and several other family situations that were happening simultaneously, I had to think positive and I couldn’t be around anybody that wasn’t positive. I felt like anybody that was not positive or trying to be light on the subject was just too overwhelming for me. And I think the outcome from this, like I explained to you guys for a while ago, that I used to be an A plus plus person, just completely like your typical A plus plus person. And it’s changed me. And now when I speak to people or I speak to groups, whatever, and even in my own life, positivity, really a positive outlook really helps, and I think that’s one of the things that we should all stress, if any of us speak to any cancer survivors or anybody going through it is you have to find a place where you can just kind of think about something positive because you never know, and there’s always hope, and there’s great treatments out there, so if it’s all possible, think positive, that’s really how I feel.
And it taught me a great lesson to be honest with you.
Lisa Hatfield:
Great comments. Yeah.
Thomas:
Yeah, being the most tenured on the panel, I’ve had numerous… I’ve had three stem cell transplants, I’ve also relapsed numerous times afterwards, and toxic positivity is something that again, acceptance is a reason that I could answer, or I can speak on how I relate toxic positivity to myself. Some of the phrases that I use are, it’s just another test to add to my testimony, that’s the positive part about it, that I have a testimony and that I’ve relapsed, but this test is something that’s going to… I need this test to get back to add to my testimony to get to where I need to be right now.
So that’s what I took away from the toxic positivity aspect of the conversation, and then as I was speaking to one of my friends yesterday, he enlightened me in conversation, we’re talking, and then he gave a toxic positivity speech, unbeknownst that I was already talking about. I was thinking about some things that he said that his father-in-law passed away, and he said that he’s in a better place, and that’s the toxic positivity that he used to explain to his wife because his wife was struggling with it, and he had to tell her that, hey, although he’s gone, he’s in a better place.
So, we all use toxic positivity, and we don’t even know that we’re using it, but being that I’ve relapsed so many times, I utilize toxic positivity for myself because mentally, I need that drive to say, Okay, I relapsed again. I don’t want us to come to a dark place where I can’t believe I’m back into a position where… Why me, why me, why me, why me? And I just want to stay on the why not me side of the aspect, so that’s what I utilize toxic positivity for myself.
Lisa Hatfield:
Those are great comments, and I think you’re right, I think what is called toxic positivity is sometimes just acknowledging what is not so great, but trying to make a positive out of it because we have to… It’s part of survival mechanism sometimes, and so… Yeah.
Diana:
We have to keep from crying.
Thomas:
Yeah, that’s why… That one that I always say, this is just another test to add to my testimony, that’s just something that keeps me on a higher level to not be an it down in the dumps about my disease that I’ve relapsed once again.
Lisa Hatfield:
I love that comment too. It’s a great…
Diana:
I know I wrote it down.
Lisa Hatfield:
That’s a great mantra. Maybe you can make one for me too, I’ll put up on my wall here… Yeah, I love that. And I do think, yeah, sometimes I think people have wondered if I’m in denial about what’s going on, I have my dark days, but it’s not denial, it’s just sometimes choosing not to focus on the negative news because we have to keep propelling ourselves forward, dealing with what we have… Yeah, we have cancer. Sometimes I don’t like when people say, oh, you’re a cancer patient, well I’m a person who has cancer, but I know it’s a common thing to say as a cancer patient, so… Yes, we’re cancer patients.
Thomas:
But just say you’re a cancer survivor.
Lisa Hatfield:
Cancer survivor. That’s true. Yeah, that was true.
Lisa Hatfield:
Yeah, that is very true. So yeah, I think that that’s toxic positivity, it was something that somebody brought up to me before and said When I act kind of Pollyanna-ish, that that’s what that’s called… I had no idea what it was. I think I truly believe. I think sometimes people don’t know what to say. I think, Thomas, that you said that people just don’t know what to say when they know you have cancer, they don’t know what to say when they see you again and you look pretty good. Do I say she looks great? Do I say he looks good? Do I say, oh, I’m happy you’re doing well. They don’t really know, do you still have cancer, they don’t know if they can ask that question, so I think that… I’m not sure what I was going down a path with that, but I think people, whenever they say something, even if it sounds, may come across as, oh, you’re lucky you don’t have this or that, I think that’s another state of toxic positivity. It’s well-intended, I believe. I always believe people have the best intentions, they just don’t know what to say, so…
And for myself, I might choose toxic positivity. I’m not sure if mine’s toxic or not, but I choose positivity too, so thanks for all of those comments and then Donna? Yeah.
Donna:
I was just going to reiterate; I agree with you. I think it’s such an uncomfortable subject for patients and family and friends that they don’t know what to say, they try to say something positive. But sometimes it doesn’t come out. And for us, we have to be on a higher ground, we just have to be because we are dealing with something that’s emotional, physical, psychological, however you want to put it. And it’s a struggle some days. But the more we stay positive, the better we are, and like Thomas, Thomas has been through a lot, you’ve been through a lot, Diana and I’ve been through our own experiences, but we try to maintain positivity and… I really believe that it’s a very difficult subject, and there will always be a difficult subject for anybody to deal with whenever they’re diagnosed, so it’s difficult, but I think that we all try to figure out a better way to deal with it. And family is supportive, and so I try to get up every day and put my wig, my make-up on, and I had my uniform when I went out the door with a big smile, even if I was like dreading it.
But you just have to do it. And so, I think it’s important for all of us to just maintain as much as we can maintain.
Diana:
I was going to going to say, if you’re having one of those bad days, and like you said, most people are very well-meaning when they say something to you positive, again, just respond in a positive manner and then talk to somebody else who’s been there that you can vent about, like this group for me. I could vent with you… I worked for the Alzheimer’s Association for nearly 14 years. My mother died of younger onset Alzheimer’s, there’s nothing funny about that, there really isn’t… I felt like I could maybe joke about it because I’ve been there done that, but I didn’t want people coming up to me and saying, Oh, you work for the Alzheimer’s Association, I forgot that. You know that’s not funny, but you just try and respond because it’s an awkward situation, so just to respond to it in a positive manner and then you can… Vent to somebody who’s been there, done that.
What Are Your Go-to Coping Mechanisms While Living With Cancer?
What Are Your Go-to Coping Mechanisms While Living With Cancer? from Patient Empowerment Network on Vimeo.
Lisa and Thomas, living with Myeloma along with Donna and Diana, living with NHL share their unconventional ways they’ve found to cope with cancer. They share times when humor has helped them through dark moments and how exercise keeps them in high spirits.
See More from PEN-Powered Activity Guide 12
Transcript:
Lisa Hatfield:
Hi, my name is Lisa Hatfield, I’m the myeloma Empowerment Lead for Patient Empowerment Network. We are going to have a program today., I’m super excited about with some panelists who are going to a little bit lighter program, going to talk about humor in cancer and maybe laughter, happiness and cancer. Quick disclaimer that this program is solely based off of our patient experiences, and it is not intended to be a substitute for your professional medical advice. Please talk with your medical team if you have any questions about your medical condition. So we’re going to start right off with our panelists introducing themselves, and we have actually two different types of cancer that are being represented today, we have protected blood cancer, multiple myeloma, and diffuse… I remember how to say it, diffused large B-cell lymphoma. I think it’s a type of non-Hodgkins lymphoma, is that correct? Okay, yes. So, I’m one of the Multiple Myeloma patients I’ve been… I’ve had multiple myeloma for four years now, doing relatively well, my bio markers in my blood are stable, I’m not really in remission because my bone marrow biopsy has come back positive, but doing well in general. Mentally, I’m doing great.
Feel pretty good about things. And that’s why we’re here today. So, we’re going to just go around the room, the Zoom room, and I’ll just start from my left to right around. So, with Diane, you can just give your name, type of cancer, any treatment you’ve had, where you’re at now, and anything else you want to share about yourself?
Diana:
Sure, Diana Bosse, and I am one of those diffused large B cell lymphoma survivors. I was diagnosed in April of 2019, so I’m about getting close to four years out, which is promising. Doing great today. And just really happy to be here. I’m the author of a book called The Perks of Having Cancer, which I wrote during my treatment, so it was what kind of motivated me and kept me going.
Lisa Hatfield:
Thanks, Diana and going around my room here… Thomas, your next in line.
Thomas:
Hi, I’m Tomas Goode, and I am a multiple myeloma survivor. This year, 2023 makes 18 years for me. I was diagnosed at a very young age of 34 years old, and I am now living with this disease, and I want to show everybody how to… How I utilize my time to live with this disease.
Lisa Hatfield:
Alright, thanks, Thomas. Donna.
Donna:
Hi, I’m Donna Landsman, I’m also a diffused large b-cell survivor. I was diagnosed in 2013. I was re-diagnosed two years ago with follicular lymphoma, which is indolent and slow-growing, and honestly, if I never have symptoms, I never have to be treated, so fingers crossed.
Lisa Hatfield:
Alright, we’re crossing them. Thanks, Donna. So, I was going to just mention, you guys can jump in a time… How all four of us met, we came together just a few months ago, I feel like we know each other super well now because we’ve stayed in contact, but in case anybody is wondering, we were brought together by the patient advocacy segment of a biotech company on the east coast near Boston. We did not know each other prior to that, and we worked on helping this particular organization understand the patient perspective, we also did a couple of activities where we all tried to support other patients who are… Who are may be located in hope lodges or receiving treatment and staying in hope lodges around the country. So over the course of two or three days, the four of us who were complete strangers coming together, had the best time together, at least that’s my perspective, I might be projecting that on to you thinking I had the best time, but we had a great time together, and I’ve always tried to maintain a decent attitude, a pretty positive attitude about my cancer and my diagnosis after having met the three of you and working together, it really reinforced how important positivity and having a sense of humor, even if it’s about our cancer, which we’ll talk about a little bit later.
So, we’re going to be talking about humor and cancer, and that incorporates anything about positivity and cancer humor or laughter, happiness, they’re all different, but I think pretty important in dealing or coping with our cancer diagnosis. So just wondering if any of you have anything to share about how prior to diagnosis or just in life in general. So, anybody watching this has some thoughts or tips on what do you do to create more humor in your life or to acknowledge more humor, to be more humorous or have more positive in your life? Donna, any suggestions, any thoughts on how you…
Donna:
Well, you know, you kind of brushed upon a subject a little bit it before, and so I really do need humor in my life, I need comedy, and so for me, I try to watch whatever I can… Like you had mentioned, America’s Funniest videos, I watch comedians. You know our own personal experiences, like with Sebastian Maniscalo, I listen to a lot because I relate to that type of humor, and so that actually took some of the edge off of a lot of my uneasiness or when things were like a really dark, deep day for me, I really look for humor and I need it, and you know like you said, we can find humor of going through our cancer experiences, and some of it is relatable and some of it isn’t. For some of it we can say Ah ha, yeah, I’ve been there. And so, it’s a way to touch upon something that another person can relate to, so I thought that was… I really liked the subject because I think we need more humor, and I think it needs to be lighter, so… It’s great. Yeah, really.
Lisa Hatfield:
And Thomas, I know both you and Donna mentioned, it doesn’t really have to be humor, but even how you cope with some of the things that you talked about, working out, exercise, so you can talk about humor or exercise or both, how you used those for coping mechanisms.
Thomas:
You know with humor, I utilize my groups, this group that I’m in, my group of guys that I ride my bikes with, the group of guys that I exercise with, we all keep each other laughing so much just by sending us stupid stuff we find on the internet, TikTok, whatever, and that really enlightens our day. But another coping mechanism is me in the gym. All throughout my myeloma journey I’ve utilized that as a way of outlet… A way of de-stressing you realizing that as an opportunity to take out everything that I have on the exercise equipment versus me sitting in and thinking about it, so I like to cope with anything that I’m dealing with in the gym like that.
Lisa Hatfield:
That’s awesome. And Thomas inspires all of us by sending pictures out so we can see him in the gym, makes us get up off the couch or you guys probably are good about the other two ladies, I’ll be like, Oh, I better get moving cause Thomas just sent a picture, I’m better going to do something. So yeah, Donna go ahead.
Donna:
I wanted to say that actually, I tell my children, I tell everybody that exercise is my drug of choice, and I exercise all through my chemo treatments, whether I did five minutes, whether I did seven minutes, my gym was open in my building 24 hours and I just needed to get down there to do something, and it was really a way to release… We really weren’t able to drink alcohol and not that I drink a lot anyway, but I needed to do something and the physical outlet was the best for me, really. And so, I’m with Thomas. Thomas and I worked out the day of our last day in the Boston area.
Diana:
We saw the pictures.
Thomas:
Yes, we took a one-handed selfie.
Diana:
I agree, I think exercise is a great release, and for me, if you… I went to yoga classes when I was going through my treatment, and if you saw me trying to do some of the yoga poses, that in itself was very humorous. I get tangled up.
Lisa Hatfield:
I’m like you guys, I like to work out. I don’t work out as much as you do, but I go for walks and whatnot, and that definitely helps me cope, and also just being around my friends. Thomas mentioned being in groups, but being around other people… I have a friend who is Greek, and she embodies that Greek passion and exuberance, and she is the side of me that… Things that are going through my head, she says them out loud, I love being around her, and I’m just going to mention this really quick, cause it has to do with my friend who’s that with my friend who is Greek, but Diana is an author, like she mentioned, she wrote, I have this book as my prop here, The Perks of Having Cancer, and no, Diana has not paid me or bribed me, or even given me chocolate for talking about her book, I just talk about books, that I like to read, but there’s one excerpt in there about watching reality TV, and it references Dr. Pimple Popper. Well, what I did actually right after I was diagnosed for fun, I think was I never watched reality TV, especially the really gross things, but I found it the grossness of that kind of funny.
So, I talked, I asked my best friend one night. Let’s have a gross TV night and watch something, not Dr. Pimple Popper, but just totally disgusting called The Toe Bro. And I might add, if I’m allowed to say that we do happen to have a retired podiatrist, so talking right now, Donna. So, where she might make money off of looking at feet… I’m disgusted by feet, so we watched The Toe Bro and my friend who has no problem making she’s full of one liners, she’s ridiculously funny watching The Toe Bro. She was making comments, I was laughing my head off, watching reality TV, which is so out of character for me anyway, that’s how I found humor and laughter, I guess before and during my treatment with my myeloma… Go ahead Donna.
Donna:
In my defense as a retired podiatrist, I just want to say that it’s better than some of other aspects of our anatomy, so toes were fine for me
