Tag Archive for: sleep

Expert Advice for Moving From Follicular Lymphoma Patient to Survivor

What are recommended steps to move from follicular lymphoma patient to survivor? Expert Dr. Kami Maddocks from The Ohio State University Wexner Medical Center shares healthy lifestyle advice and psychosocial tips.

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Transcript:

Lisa Hatfield:

Sean is saying that he was diagnosed with follicular lymphoma in 2022 and is in active treatment. What advice do you have for someone transitioning from patient to survivor? I am eager and fearful.

Dr. Kami Maddocks:

Awww. Well, another good question. And I think one thing I want to recognize is that somebody with cancer is defined as a survivor from the time they’re diagnosed moving forward. So you’re already a survivor. But when you, I do think, and I tell patients this, even when we’re talking about starting treatment, I do think that being aware of kind of where patients are at mentally is important.

Because when you go through, when a patient goes through treatment, they’re very focused on next steps and next steps when you’re going through treatment are, when’s my next treatment going to happen? When’s my next scan going to happen? When you get to that point, when you’re done with treatment, you no longer have those small milestones that you’re reaching the next treatment, the next scan. You now are like, oh my gosh, I had this treatment and now, how long is it going to last?

What’s going to happen to me? What else can happen to me? And there can be a lot of fear and anxiety. I would first tell you that’s totally normal. That is a normal feeling to have at this point. So I think one, recognizing that you have them is important. I think considering things like we’ve talked about, is there a survivorship clinic, is there psychosocial oncology? Is there something that might help in talking those things out? I think setting up milestones, what is the next thing? I’m going to have a three-month appointment, I’m going to have labs.

These are the things I need to be thinking about, but if I’m not noticing these also, what things can I do to return to the things I like to do. I think also I would go back to saying, I think this is where just thinking about getting good sleep, getting exercise, eating a healthy, balanced diet, and then socializing and making sure that you’re involving friends and family.

Lisa Hatfield:

Okay. Thank you. And, Sean, you’re already a survivor, Dr. Maddocks said so.


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Enhancing Cancer Survivorship Through Wellness Strategies

 

How can wellness strategies enhance cancer survivorship? Expert Dr. Amy Comander from Massachusetts General Hospital discusses research on lifestyle interventions, the role of nutrition and gut microbiome, and other impactful lifestyle interventions.

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Survivorship Care: Screening and Lifestyle Strategies to Reduce the Risk of Secondary Cancers

Survivorship Care: Screening and Lifestyle Strategies to Reduce the Risk of Secondary Cancers

What Are the Benefits of Early Integration of Lifestyle Medicine?

What Are the Benefits of Early Integration of Lifestyle Medicine?

Equity in Cancer Care: Accessing Lifestyle Medicine for All

Equity in Cancer Care: Accessing Lifestyle Medicine for All

Transcript:

Lisa Hatfield:

Ensuring overall well-being during cancer treatment involves more than just addressing the illness itself. Wellness strategies are key but do they really optimize the health of cancer survivors? I’m getting to the bottom of it with a respected oncologist in this Patient Empowerment Network RESTORE program. 

Dr. Comander, what are some of the most effective wellness strategies you recommend for patients to incorporate during cancer treatment to support their overall well-being?

Dr. Amy Comander:

I’m really excited that over the past few years, we’re seeing more and more research demonstrating the important role of lifestyle interventions in terms of improving our patient’s outcome after a diagnosis of cancer. So I’m a breast oncologist, and of course there’s so much data in the field of breast oncology. But now we’re seeing so much data emerging with regard to individuals with prostate cancer or gynecologic cancers or hematologic malignancies, such as multiple myeloma.

So this is really an exciting time to be paying close attention to this field. So when you say, what are some of the most effective strategies? I have to pick my favorite exercise. This field of exercise oncology is really exciting, demonstrating that individuals who are able to engage in physical activity after their cancer diagnosis have improved quality of life, reduce cancer-related fatigue, and in many cases, improve outcome. And a lot of this data has certainly come from the field of breast oncology, but again, we are seeing it more and more in other types of cancers as well.

In terms of other wellness strategies, we’ve talked a lot about the important role of nutrition and thinking about some of those key concepts of what we consider an overall healthy diet, a predominance of fruits and vegetables, whole grains, limiting red meat, avoiding processed foods, and avoiding sugar-sweetened beverages and alcohol. So that’s kind of all part of a healthy diet that we think about. But more and more research is also demonstrating that diet can actually potentially influence outcome as well. And there’s a lot of research trying to understand the mechanisms of this.

And I think if your listeners are wondering, what’s an area where I can read more about this? I feel like the gut microbiome, learning more about that is really interesting. We know, for example, in the field of multiple myeloma research, or in the field of looking at immunotherapy drugs, a healthy, diverse gut microbiome, meaning those bacteria in your GI tract have favorable characteristics, and they’re very diverse and healthy, that is a reflection of the diet. Lots of healthy fruits and vegetables, fiber in the diet helps result in a healthy, diverse gut microbiome, which in emerging studies is showing that that is associated with an improved microbiome responsiveness to certain drugs, particularly immunotherapy.

So this is an exciting time. The field is evolving, but I’m excited to learn more as we continue to see these studies emerge.

Lisa Hatfield:

Thank you. And, Dr. Comander, how do you see lifestyle medicine contributing to optimizing the health of cancer survivors, particularly in reducing late effects and improving overall well-being?

Dr. Amy Comander:

I’m a strong advocate that these tools from lifestyle medicine should be a part of every patient’s cancer treatment. And these are pretty basic things when we think about, again, physical activity, encouraging exercise, following a healthy diet pattern, getting adequate sleep, social connection. Actually, let’s talk about social connection. I feel like that’s one when I first started getting to this field, I’m kind of like, yeah, social connection, that’s important.

But I will tell you, as I’ve been doing this more and more and working with groups of patients, focusing on providing education about diet and exercise and stress management and sleep and all of these important things that we’ve been talking about, I’ve noticed that the support from other individuals who truly get it, if you bring a group of patients together who are all going through treatment for multiple myeloma, or prostate cancer, or breast cancer, or whatever it may be, that support piece, talking to another person who’s facing the same challenge, who might want to meet you at the YMCA and go to that exercise class, or might be willing to text you, “Hey, how are you doing with those salads you’re trying to have for lunch each day?”

That accountability and support is such an important component of health. And I think we really learned during the pandemic how much social connection and support is so integral to our health. So I think in the field of oncology, the work this organization does, and so many others, that building up community, social connection, social support is really something we should invest more in to help improve the health and well-being of our patients with cancer.

Lisa Hatfield:

Absolutely agree. Thank you. You heard it here from Dr. Amy Comander. Thanks for joining this RESTORE Program. I’m your host, Lisa Hatfield.

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment from Patient Empowerment Network on Vimeo.

What are some ways for follicular lymphoma patients to cope with emotions after treatment? Cancer patient Lisa Hatfied shares coping methods and health lifestyle advice for dealing with stress and anxiety.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

After you are done with your follicular lymphoma treatment (including stopping any maintenance therapy), you may feel anxiety or stress and ask yourself “Well now what?” This range of emotions is normal. One woman  shared, “After a year in remission, dealing with the aftermath of follicular lymphoma has been tough. Initially, the news of remission brought euphoria and excitement that lasted the whole day. However, soon after, I found myself feeling numb—and then grappling with guilt for feeling that way.

You may feel similar to this woman or you may feel like the other shoe is about to drop (i.e. concerned about recurrence in the future). Here are some tips to help manage this stress and anxiety: 

  • Manage your expectations. Give yourself a break and set realistic expectations. After you stop maintenance therapy, you may not feel 100% back to normal right away so give yourself grace 
  • Research has shown that fear of recurrence can be reduced when your healthcare team is able to give people statistics about curability or remission length. Ask your healthcare team if you find comfort in statistics. 
  • Talk to a counselor and seek antidepressant or anti-anxiety medications
  • Exercise and relaxation techniques like meditation and mindfulness may also help
  • Continue healthy lifestyle factors, just like you did during treatment, including good diet/nutrition, getting enough sleep, etc. 
  • Join a support group designed to help people who have completed treatment. It can be helpful to hear what other people do to manage their anxiety/stress and know you are not alone in feeling this way. 

Sources: 


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Can Mobile Health Apps Lower the Burden of MPN Symptoms?

Can Mobile Health Apps Lower the Burden of MPN Symptoms? from Patient Empowerment Network on Vimeo.

How can the burden of myeloproliferative neoplasm (MPN) symptoms be lessened through the use of mobile health apps? Blood cancer patient Lisa Hatfield shares common MPN symptoms that patients experience and explains wellness strategies and mobile app study results that decreased the symptom burden for patients.

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How MPN Patients Can Best Prepare for a Telemedicine Visit

Transcript:

Lisa Hatfield:  

As an MPN patient, you might experience symptoms like fatigue, night sweats, difficulty sleeping, abdominal discomfort, bone pain and others. However, early data using integrative approaches for the treatment of MPNs are promising, including aerobic activity, yoga, meditation, and strength training, to reduce the symptom burden and improve inflammation. With the evolution of smartphone technology, mobile apps have been increasingly popular to document wellness strategies. With this in mind, the University of Arizona Andrew Weil Center for Integrative Medicine developed and successfully piloted a global wellness mobile app, My Wellness Coach (MWC), to guide MPN patients on self-management strategies for their symptom burden. 

The app had patients set at least two wellness goals with clear action steps within these seven areas: nutrition, movement, sleep, resilience, environment, relationships and spirituality to work on over the course of 12 weeks. Within the app, there were links to curated resources and tips. Participants were sent 24- to 72-hour interval reminders before and after each action step and a goal deadline to encourage action throughout the intervention. At the end of the study, improvements were observed in inactivity, impaired concentration, dizziness, numbness, sexual dysfunction, night sweats, bone pain, and quality of life. 

If you’d like to implement something similar to what the participants did, try the following: 

  • Reflect on why you want to change your symptom burden so you feel motivated  
  • Determine which of these categories: nutrition, movement, sleep, resilience, environment, relationships, and spirituality would you like to set goals in 
  • Create two goals from those categories and make them SMART- specific, measurable, attainable, relevant, and time-bound. 
  • Utilize resources available to you through support groups or online tools 
  • Set reminders on your phone or calendar for each step you need to take to complete your SMART goals

Mobile-based apps are another example of how MPN patients can use telemedicine in their day-to-day life and improve care.


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

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

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

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

See More From the The Path to MPN Empowerment

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Transcript:

Summer:

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

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

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

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

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

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

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

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

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

Can Diet and Exercise Reduce MPN Symptoms?

Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo

What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.

See More From the The Path to MPN Empowerment

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Can Diet and Exercise Reduce MPN Symptoms?


Transcript:

Ryan:

So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.

And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.

So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.

We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.

Dr. Huberty:

So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.

It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.

Dr. Huberty:                

So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.

So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.

Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.

Helping Cancer Survivors Sleep

This blog was originally published by Cancer Today by Cheryl Platzman Weinstock, here.

A clinical trial comparing acupuncture and cognitive behavioral therapy found that they are both helpful for people who are experiencing sleep problems after cancer treatment.

​Photo by Marjot​ / iStock / Getty Images Plus

PEOPLE WHO HAVE BEEN DIAGNOSED with cancer often face sleep problems stemming from the physical effects of cancer treatment as well as psychological or spiritual concerns related to the diagnosis.

A randomized clinical trial published April 9, 2019, in the​ Jo​urnal of the National Cancer Institute​ compared cognitive behavioral therapy for insomnia (CBTi) and acupuncture in patients who had completed treatment for a variety of cancers. Study results showed that participants assigned to the CBTi group experienced a greater reduction in insomnia severity over the course of the study compared with the acupuncture group. However, survivors treated with acupuncture also experienced meaningful improvement in their sleep.

The researchers assigned 80 patients to receive CBTi from therapists trained in the technique over the course of eight weeks. CBTi has previously been shown to be effective in improving sleep in cancer survivors. The therapy works in part by modifying unhelpful beliefs about sleep and providing relaxation training. Patients are also asked to limit their time in bed and use it only for sleep and sexual activity. Another 80 patients were assigned to receive acupuncture over the course of eight weeks. Participants in the study were 62 years old, on average, and had completed active cancer treatment.

The researchers asked the participants to fill out a questionnaire asking about insomnia symptoms both before and after receiving treatment for insomnia. Patients reported significant improvements after receiving either CBTi or acupuncture, both when surveyed immediately after their course of treatment for insomnia and about three months later.

“While overall we found that there is a statistically significant benefit of CBTi over acupuncture, the difference is actually small,” says Jun Mao, chief of integrative medicine at Memorial Sloan Kettering Cancer Center in New York City, who led the study. “I certainly think both treatments produce clinically meaningful outcomes and they persist.”

When they looked more closely at subgroups of patients, Mao and his research team found that CBTi was only significantly better than acupuncture at reducing insomnia for males, white people, people who had graduated from college and people without significant pain. For other groups, the two treatments had a similar effect.

Poor sleep can have a variety of effects, including increased pain, depression and fatigue, says Sandra Mitchell, a research scientist and program director in the Outcomes Research Branch at the National Cancer Institute in Rockville, Maryland, who was not involved in the study.

Although Mitchell says she believes additional studies are needed to look at the long-term effects of acupuncture and CBTi management, she says, “This study yields important and clinically actionable results that patients and providers can utilize in a shared decision-making approach.”

Weidong Lu, lead oncology acupuncturist at Dana-Farber Cancer Institute in Boston, says today many patients with insomnia are first put on medications, which can cause side effects. “I think it’s best starting patients on nonpharmaceuticals for mild- and moderate-level insomnia. Severe, long-term insomnia probably needs a combination approach” that includes drugs and other therapies, such as acupuncture and CBT, says Lu, who was also not involved in the study.

The trial was supported in part by the Patient-Centered Outcomes Research Institute (PCORI), a nongovernmental organization funded through a trust established by the Affordable Care Act to carry out research guided by patients and caregivers.

Jodi MacLeod of Collegeville, Pennsylvania, was one of the patient partners who provided input into the design and execution of the clinical trial. She was diagnosed with stage II breast cancer in 2004.

After treatment, “the expectation was that I would return to being a normal stay-at-home mom, but my insomnia was really disruptive,” she recalls. Her sleep problems led to mental fog and fatigue. Eventually, MacLeod’s husband rearranged his work schedule to help take care of their three young children.

“Back then, in 2005, insomnia and cancer wasn’t well researched and recognized. I actually thought it was my fault,” says MacLeod of her difficulty in sleeping.

MacLeod met Mao in 2006 when she enrolled in a study he was conducting at the University of Pennsylvania in Philadelphia on acupuncture and cancer-related joint pain. When Mao was ready to do his PCORI-funded research on cancer and sleep, he reached out to MacLeod for her help.

Among other contributions, MacLeod and her fellow patient advisers helped decide what questions the study would seek to answer, shape inclusion and exclusion criteria for the trial and recruit a diverse group of patients to participate, as described in a 2017 paper​ that MacLeod co-authored.

“It is satisfying and empowering to know that we’re leaving the cancer waiting room better than we found it,” says MacLeod. “Cancer patients now don’t have to go through what I did, because now there are effective insomnia treatments available.” 

Cheryl Platzman Weinstock is a journalist who reports on health and science research and its impact on society.​