Tag Archive for: anxiety

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma

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Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma from Patient Empowerment Network on Vimeo.

How can CAR T-cell therapy barriers for relapsed/refractory myeloma be reduced? Expert Dr. Sikander Ailawadhi from Mayo Clinic shares his perspective about barriers to CAR T and advice for patients to reduce access issues.

[ACT]IVATION TIP

“…the number one way of mitigating any healthcare access issues or the fears and scares about CAR T is, speak with a CAR T designated expert at a center that gives CAR T-cell therapy, and then only make a decision whether you want CAR T therapy for yourself or your care, your loved one or not.”

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How Can CAR T-Cell Therapy Be Explained to Patients and Families?

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Roadblocks for Black and Latinx Patients From CAR T Trial Access

 How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

Transcript:

Lisa Hatfield:

Dr. Ailawadhi, what are the most significant challenges or barriers that patients with relapsed/refractory myeloma face when considering CAR T-cell therapy as a treatment option? And how can these challenges be addressed to improve patient outcomes and access to care?

Dr. Sikander Ailawadhi:

Lisa, it’s very important for us to remember that while we talk about CAR T or advancements in myeloma, your question of what are the most significant challenges and barriers for patients with relapsed/refractory myeloma, and especially when they’re considering CAR T, and how do we try to overcome these challenges? This is a very important question. CAR T-cell therapy is very resource and a time-intensive treatment. Patients may not have a CAR T center close to them. They may have to go closer to a center, live there for about a month or so, or sometimes even more.

During this time, the treatment has to be controlled. There are approvals from insurance, there are tests required, in between treatment to control the disease, and then sometimes staying in the hospital, sometimes…and, of course, need for a caregiver, that is such an important requirement. Of course, the promise of treatment is that at the end of it, the patients may come out and maybe, with significant disease control.

But to get to that promised land, we have to walk through this…as I said, a time intensive and a resource intensive situation. Now, all of this is very daunting, is very anxiety provoking, is very scary, in fact. To me, the biggest way of overcoming these challenges, improving access to care, et cetera, is, let that patient see a qualified CAR T-cell center.

And importantly, a physician who gives CAR T-cell therapy, that one consult or one visit can take care of so many fears, anxiety, scares, et cetera, because frankly, all of our centers, all of us who focus on CAR T-cell therapy, we have a whole slew of resources at our disposal which we can bring together for the patients and their caregivers, whether it’s navigators, revenue or finance analysts, social workers, clinical psychologists, these are all a part and parcel of our CAR T-cell journey for a patient.

But frankly, I cannot bring those resources to a patient when they’re not even established with us, or they don’t even set foot through our doors. My activation tip for this question is the number one way of mitigating any healthcare access issues or the fears and scares about CAR T is, speak with a CAR T designated expert at a center that gives CAR T-cell therapy, and then only make a decision whether you want CAR T therapy for yourself or your care, your loved one or not.

Lisa Hatfield:

One quick question. Are you still seeing the bottlenecks for CAR-T therapy since it’s been FDA-approved? You have patients who want it but cannot access it because there’s a bottleneck with a process. Is that a barrier?

Dr. Sikander Ailawadhi:

It’s a good question. So in recent months, we have noticed that the initial bottleneck with availability of slots and numbers for CAR T, those bottlenecks are easing up quite a bit. With both the CAR T manufacturers in the U,S., there is hardly any wait list issue. And if patients are going to centers that are saying that, there’s too long of a wait list, we can’t get you to it, they should go to another center.

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AML Diagnosis | Exploring Bone Marrow Biopsy and Alternatives

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AML Diagnosis | Exploring Bone Marrow Biopsy and Alternatives from Patient Empowerment Network on Vimeo.

What are the purpose and alternatives to bone marrow biopsy? Expert Dr. Sara Taveras Alam from UTHealth Houston explains what’s involved in bone marrow biopsy, what is analyzed, patient advice for the procedure, and alternative testing methods.

[ACT]IVATION Tip

“…ask the providers what to expect from the bone marrow in the facility where you are in. Usually in all facilities, lidocaine, or local anesthesia is used, but if you foresee that in general, you are anxious about procedures or susceptible to pain, you are welcome to request for some medications for pain and anxiety to help you get through that procedure, and generally, once patients have undergone a first bone marrow biopsy, they know what to expect and what accommodations may be needed for them in subsequent bone marrow biopsies.”

See More from [ACT]IVATED AML

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Transcript: 

Lisa Hatfield:

Dr. Taveras, what specific features are pathologists looking for in the bone marrow sample when diagnosing AML, and are there any alternative diagnostic methods or tests available for AML besides a bone marrow biopsy?

Dr. Sara Taveras Alam:

And that is a great question. I think that many patients may be scared of what bone marrow biopsy entails. It is a procedure after all, and it can be painful. I do know that they’re able to get some details about the diagnosis from the peripheral blood just from blood tests alone; however, the best diagnosis is performed through the bone marrow biopsy, so it can provide more information about the email, than what we’re able to obtain from the blood, sometimes the blood count, the white blood cell counts are elevated in AML and that may make it easy to do some of our testing from the blood work, but in other patients, the white blood cells may be low at presentation and that can make it very difficult to obtain any meaningful diagnostic and prognostic information without a bone marrow biopsy.

The bone marrow biopsy would also allow to tell if the patient had a preceding blood disorder like a myeloid dysplasia and this may have treatment implications. This is not something that we would be able to tell from the blood alone unfortunately, so when our pathologists look at the bone marrow sample, they are looking at some of the blood that is obtained from that boom marrow space where the blood is produced, and a tiny piece of the bone from there as well, and they’re looking at the amount of cells, especially the normal red cells, the normal white blood cells, normal platelets, and specifically the abnormal white blood cells or blasts that are quantified in a percentage fashion to diagnose the AML.

There are also different types of blasts, so they may be able to sub-classify the AML from just looking at the morphology or how these cells look under the microscope. There are many ancillary tests that are performed on the sample as well to look into the genetics for the driving forces behind the acute myeloid leukemia.

We look at a chromosome analysis to see what the chromosomes are for the leukemia. We look at mutations during FISH testing, and we do molecular testing that are looking at specific point mutations that may be associated with AML and provide insight into the treatment options as well as the prognosis, the patient’s disease, and whether or not they may benefit from a stem cell transplant to increase the chances of maintaining a remission and obtaining a cure.

My advice for patients who may be anxious about the bone marrow biopsy would be to voice their concerns for their providers. I believe that different centers have different practices as it relates to pre-medication, so some places may provide anxiety medications and pain medications in advance of the procedure, but some other facilities may not. So my activation tip for this question is to ask the providers what to expect from the bone marrow in the facility where you are in.

Usually in all facilities, lidocaine, or local anesthesia is used, but if you foresee that in general, you are anxious about procedures or susceptible to pain, you are welcome to request for some medications for pain and anxiety to help you get through that procedure, and generally, once patients have undergone a first bone marrow biopsy, they know what to expect and what accommodations may be needed for them in subsequent bone marrow biopsies.

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Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

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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. 

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How Can I Manage Anxiety After Follicular Lymphoma Diagnosis?

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How Can I Manage Anxiety After Follicular Lymphoma Diagnosis? from Patient Empowerment Network on Vimeo.

How can follicular lymphoma patients manage anxiety after diagnosis? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope discuss the experience of watch and wait and advice for coping with anxiety and being proactive in your care. 

See More from START HERE Follicular Lymphoma

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 Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Transcript:

Dr. Tycel Philllips:

It’s really about some patients are very uncomfortable being watched with an active cancer. And so, in that situation, that’s probably the biggest discrepancy we have nowadays. Because of the anxiety of the watch and wait approach. Some patients would like treatment right away, irrespective of whether they need it or not. So, you’ll sometimes get discrepancies with our patients about that.

Lisa Hatfield:

The clip you just heard was Dr. Tycel Phillips from the University of Michigan Rogel Cancer Center, who explained  how if follicular lymphoma patients are feeling anxious about being in the watch and wait period (aka not starting treatment), they may go seek a second opinion, which is perfectly fine and even encouraged by physicians.

However, even during the watch and wait period,  there are still things you can do to improve your health and well-being. Taking control of what you can control may help you feel less anxious. Here are some tips: 

  • Learn as much as you can about your diagnosis. Know the signs or symptoms that may mean it’s time to start treatment and stay up to date about the latest treatment advancements.
  • Establish a relationship with a hematologist-oncologist specializing in your diagnosis. Proactively becoming a patient under their care ensures that, if treatment becomes necessary, you’ll already have a healthcare professional familiar with your case andis  updated on the newest available treatments. This specialist does not need to be the same doctor overseeing you in watch and watch.
  • Attend all doctor appointments, even if you are feeling well. Some patients may stay stable for years before symptoms or disease progression makes treatment necessary. If you notice changes at any time, don’t wait to reach out to your healthcare team.
  • Maintain health insurance coverage, if at all possible. If you do need to begin treatment, you will need health insurance to help cover the cost. Even during watch and wait, regular appointments and testing can add up without health insurance coverage.
  • Improve your overall well-being with nutrition, exercise, and other good health practices, such as not smoking and moderating your alcohol intake. This approach positions you to tolerate treatment more effectively when the time comes, minimizing the risk of serious treatment complications.
  • Prioritize your mental health. Consider joining a support group or talk with a fellow watch and wait patient to help you work through your feelings and answer questions. If feelings of anxiety or depression begin to interfere with your daily activities, ask your healthcare team for a referral to a mental health professional.

These tips can be useful to you during the watch and wait period as they allow you to keep moving forward and be proactive!

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Coping With AML | Financial and Mental Health Resources

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Coping With AML | Financial and Mental Health Resources from Patient Empowerment Network on Vimeo.

What emotional and financial support is available for patients with acute myeloid leukemia (AML)? Dr. Alice Mims shares advice about how to access mental health support and financial assistance for AML care.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

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Transcript:

Katherine Banwell:

Let’s talk a little bit about mental health resources. Managing the worry associated with a diagnosis or concerns about relapse, or even various side effects can lead to emotional symptoms like anxiety and fear.  

Why is it important for people with AML to share how they’re feeling with their healthcare team? 

Dr. Alice Mims:

So, I think it’s very important because, one, all of those feelings are normal feelings. I think they’re sometimes that from going through such a rapid diagnosis and then having to start treatment pretty quickly and going through all the ups and downs with these types of diagnosis can really lead to for some patients PTSD-type symptoms. And then there are also things that can evolve over time where their anxiety or even survivorship guilt as you go if you move forward and are doing well, where you may have some friends or people you met along the way who may not have had as good outcomes. And so, there are resources available based off of where you are.  

But for survivorship, oncology-specific counseling to deal with some of these feelings that are understandable and normal for what patients have been through. 

Katherine Banwell:

Can a social worker help? And are there other people on the healthcare team who can support a patient’s emotional needs? 

Dr. Alice Mims:

Oh, absolutely. So, I think it’s really place-dependent on where you are but yes, absolutely. Social workers are a great resource for patients. There may be other collaborative teams based off of where you’re receiving your treatment that may be available that are maybe patient support groups where you can go and be with other patients or Facebook, social media support groups. And I think all those can be very helpful. And I know at least at our center, we also have patient mentors who have been through and gotten through to the other side of transplant or whatnot who are great resources, because they’ve lived and experienced it. 

And I think that’s just as a physician, I can talk about things that I don’t have that personal experience having lived through it. And I think that’s very important… 

Katherine Banwell:

Yeah. It’s a… 

Dr. Alice Mims:

…to be able to have somebody to talk to. Yeah. 

Katherine Banwell:

Yeah. What about the financial aspect of treatments? There are many people who would find it difficult to find and maybe they don’t have insurance, or their insurance doesn’t cover a lot. How do you help patients who are dealing with financial restrictions?  

Dr. Alice Mims:

Sure. So, I think that we’re fortunate here because we have a lot of support staff to help patients with our financial counseling team. We also have people within the medication assistance programs who can help find foundation grants to help with medication support, travel support. 

I think for patients who may not have those things available at their individual center, The Leukemia & Lymphoma Society is a great place to reach out for. And there are other foundations as well who at least may have navigators to help patients figure out other resources or funding available.  

Pain Outcomes Among Black Women With Early Stage Breast Cancer After Mastectomy

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Pain Outcomes Among Black Women With Early Stage Breast Cancer After Mastectomy from Patient Empowerment Network on Vimeo.

What do studies show about early breast cancer after mastectomy in Black women? Expert Dr. Demetria Smith-Graziani explains research into discrimination, trust, and pain outcomes in this patient group.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

Download Guide  |   Descargar Guía en Español

See More from [ACT]IVATED Breast Cancer

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Transcript:

Lisa Hatfield:

Dr. Smith, you’ve done extensive research in this area. Can you talk a little bit about your recent research investigating the association between discrimination, trust, and pain outcomes among Black women with early stage breast cancer after mastectomy?

Dr. Demetria Smith-Graziani: 

Sure, so I am very passionate about racial, ethnic and socioeconomic disparities in breast cancer risk treatment and outcomes, and most recently, I’ve been doing research looking at disparities in pain outcomes, so unfortunately, it’s well-documented that Black patients as a whole and women, and then particularly Black women, often have their pain not properly assessed and then not properly treated compared to their white counterparts. So I initially looked at a study of women who were undergoing different types of breast surgery, we compared women who were either getting what we call breast-conserving surgery, which is also called a lumpectomy, compared to those who were getting their entire breast removed, mastectomy.

Compared to those who were getting both breasts removed, what they call a bilateral mastectomy, and we looked at how much pain patients had after that surgery, how long it lasted, and other factors that were associated with their pain and how they felt after surgery. Now what we found is that regardless of the type surgery Black women were reporting more severe pain compared to white women, and so that’s what prompted me to engage in my most recent research project, in which I am looking at the association between perceived discrimination in the healthcare setting, trusting one’s healthcare provider and pain outcomes, particularly the severity of pain and how much that pain interferes with one’s life for Black women after they’ve had a mastectomy surgery to remove the entire breast for the treatment of their breast cancer.

So I have recruited some patients, and I am in the process of getting ready to enroll more patients on this study, and I’m hoping to get some good information about whether or not that discrimination that people receive in the healthcare setting affects the way that…how much their pain interferes with their life and how severe their pain is, and whether part of the reason that the discrimination affects their pain is related to the amount of trust that they have in their oncologist or their oncology team. And the reason that I’m looking at that specific…the reason that I’m looking at those specific set of factors is because there are a number of psychological components to the way that we feel pain, such as anxiety, depression and yes trust that are linked to the way that we experience pain and how severe that pain is and how much that pain affects our lives. 

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How Has COVID-19 Impacted Myeloproliferative Neoplasm Care?

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How Has COVID-19 Impacted Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

How has myeloproliferative neoplasm (MPN) care been impacted by COVID-19? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center shares information from an MPN care study by the Mayo Clinic on some of the impacts experienced by patients. 

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See More from MPN TelemEDucation

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Transcript:

Lisa Hatfield: 

So the pandemic has resulted in significant changes to many aspects of daily living for many of us, but for patients living with cancer like myself, there are different realities that we’ve had to deal with. Do we go in for our monthly blood draws, or do we wait a couple of months? So question for, Dr Gowin, can you give us an overview of the impact that COVID-19 has had on MPNs or MPN care?

Dr. Krisstina Gowin: 

Absolutely. Well, there was a really wonderful study that was done, really led out of Mayo, by Jeanne Palmer and Ruben Mesa, and it was an international study, and it looked at 1,500 MPN patients. And they asked questions like, “How many of you are actually having telemedicine?” And this was in 2020, kind of at the beginning. And over half of them had already been engaging in telemedicine. And about a quarter of them felt that their care actually was delayed a little bit and that there were actually consequences to that delay, so that really speaks to an international kind of change in the paradigm of how we’re delivering care for MPN patients. The other thing is the lockdowns, the lockdowns that were occurring for us here in the US and really internationally. And what they did is, they asked patients their MPN symptom burden, and those that were on lockdown, not surprisingly I think to all of us, had a significantly higher symptom burden.

So I think that really speaks to that A, yes, there was a very large impact of COVID on the development of telemedicine and the need for telemedicine. But it also underscores the need for symptom management that we now have a group of patients that are having a higher symptom burden, probably likely secondary to more sedentary behavior, more anxiety, more depression, but a higher symptom burden because of COVID. And so we really need not only more therapeutics and perhaps non-pharmacologic interventions to support their symptom burden, but it needs to be delivered on a digital platform.

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Why Should People With Prostate Cancer Share Emotional Issues With Their Team?

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Why Should People With Prostate Cancer Share Emotional Issues With Their Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Tanya Dorff explains common emotional issues that arise during treatment and monitoring, and why it’s important for patients to speak up about any feelings that may be causing distress.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 
 

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How Can Palliative Care Help People With Prostate Cancer?

 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team? 

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals. 

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important. 

How Can Palliative Care Help People With Prostate Cancer?

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How Can Palliative Care Help People With Prostate Cancer? from Patient Empowerment Network on Vimeo.

Some prostate cancer patients may receive palliative care, but how is it used exactly? Expert Dr. Tanya Dorff explains research studies about palliative care and how it can be used to improve quality of life for patients.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

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Managing the Side Effects of Advanced Prostate Cancer Treatment

 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

What is palliative care, and how can it help men with prostate cancer? 

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer. 

So, more and more, we’re starting to integrate palliative care earlier in the disease.  

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along. 

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors. 

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components. 

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well. 

8 Tips For Coping With Christmas When You Have Cancer

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Christmas is traditionally a time of celebration, feasting on festive foods and drinks and gathering with family and friends. However, if you have cancer, this may also be a time of overwhelming emotions, exhaustion, or physical discomfort. Add in concerns about the current coronavirus pandemic, and you’ve got a recipe for a stressful holiday.  “As our second COVID Christmas is fast approaching and with our world so desperately wanting to return to normal comes a lot of holiday festivities, says Marissa Holzer, who has been living with metastatic breast cancer since 2014.  “Some of these parties and gatherings may bring unnecessary stress and anxiety, even during normal times, or they may make an immunocompromised individual feel unsafe.”

Let’s take a look at some ways we might reduce the stress of the festive season.

1. Plan Ahead

Consider what aspects of Christmas may be difficult for you, and plan ahead of time for what will help you cope.  You may find it useful to write a list. For example, keep snacks, hand sanitizer, and masks in your bag when traveling away from home.

2. Listen to Holiday Music

This tip comes from two-time breast cancer survivor, Terri Coutee, who finds listening to holiday music lifts her spirits. “It can be in the form of quiet instrumental when I am feeling peaceful and reading or resting,” she explains. “When I am cooking or decorating I might put on a favorite artist with a little jazz or swing to it and dance a bit while preparing for the holidays.

3. Ask for Help

The run-up to Christmas is a hectic time filled with food shopping, gift wrapping, decorating, and extra household jobs. Now is the time to call on the assistance of those who offered to help when you were first diagnosed.  Reach out to them and ask for practical help with Christmas chores. Also, do as much of your grocery and gift shopping online as possible.

4. Schedule Rest Time

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

Cathy Leman, who works with post-treatment survivors of hormone-positive breast cancer, says that “one thing that helps my clients cope during the holidays is being deliberate in creating space for themselves; ideally before they start their day. As little as ten minutes devoted to setting an intention, doing deep breathing or journaling can help you feel grounded and balanced.”

5. Adjust Your Expectations

Arising out of the previous tip, Jennifer Douglas, who was diagnosed with DCIS, suggests keeping expectations flexible. “Since our energy fluctuates so much during and after treatment it can be really difficult to know how much to put on one day,” she explains. “I found that giving myself grace to do a lot, or a little, with regards to holiday preparations, enabled me to feel more at peace. Some days I felt good and could do a lot, and other days I didn’t have the energy. Either way, I listened to my body and did what I could. Having flexible expectations of myself helped me get through the busy season while preserving my precious energy.”

6. Set Firm Boundaries

When you visit with friends and family the subject of your diagnosis and treatment may come up at some point. It’s perfectly acceptable to tell someone that you don’t want to talk about cancer if you don’t. It can be helpful to plan ahead of time how you will respond to these questions.

Rod Ritchie who was diagnosed with breast cancer in 2014 (followed in 2016 with a diagnosis of prostate cancer), steers clear of cancer conversations as much as he can. “Because I don’t want to turn a Christmas party into a pity party, I don’t mention the ‘C word’ unless it comes up for discussion,” he says. “ It doesn’t hurt me to have a day off the topic as well!”

7. Feel What You Feel

Christmas is a time of high expectations and the reality of our experience doesn’t always match these expectations. Tell yourself that’s ok. Let yourself feel whatever it is that you are feeling. Even if how you feel doesn’t correspond to what others expect, your feelings are still real and valid.

Breast cancer survivor, Nancy Stordahl, still grieves the death of her mother from breast cancer and finds Christmas can be a challenging time. “There is nothing wrong with honoring your grief by feeling it,” she says. “No one should feel guilty about grieving during the holidays or during any time of year, for that matter.”

Prostate cancer survivor, Gogs Gagnon, who lost his sister to ovarian cancer says he finds “comfort in sharing stories at family gatherings. Reliving my favorite memories and allowing myself to cry without fear of judgment is incredibly healing and therapeutic.”

8. Prioritize What is Best For You

You get to decide the kind of Christmas you want. It’s ok to say no to certain things, such as not visiting friends or family. Discuss your needs with friends and family, but remember that it’s ok to prioritize what’s best for you, even if others don’t seem to understand. In the words of Marissa, “My motto this season:  If it doesn’t bring peace, joy and love to your heart it is absolutely okay to say no.”

My wish for you this holiday season is that it will be a time filled with an abundance of peace, joy and love, and that the new year will bring good health and happiness to us all.

Merry Christmas.

Should All MPN Patients Undergo Molecular Testing?

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Should All MPN Patients Undergo Molecular Testing? from Patient Empowerment Network on Vimeo.

Dr. Gabriela Hobbs discusses the necessity of molecular testing for myeloproliferative neoplasm (MPN) patients, including the pros and cons of this in-depth testing for patients with polycythemia vera (PV) and essential thrombocythemia (ET).

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

How useful is having a genetic panel done? Should all patients get molecular or genetic testing? 

Dr. Hobbs:

Great question. And I think that it is very important to have genetic testing.   

And genetic testing involves more than just testing the JAK2 mutation. So, we know that the JAK2 mutation is the most common mutation in patients with MPN. But that being said, there are other mutations that also occur such as the calreticulin mutation and the MPL mutation.   

And so, I think having genetic testing that at least tests for those three mutations is very important so that we can actually help a patient know that they have an MPN. In addition to those three main mutations, many clinicians now have access to what’s called extended next-generation sequencing, where there’s a panel that tests for many different genes at the same time and can test for a variety of other mutations.  

And this is particularly relevant for patients with myelofibrosis. As we know that having other mutations, like, for example, mutations in IDH or ASXL1 and others, can increase the risk of that disease in terms of its risk of transforming to leukemia or how long a patient may live with their myelofibrosis. 

And so, I do recommend having extended next-generation sequencing done at least at diagnosis.  

When I generally think about repeating that, if there’s something that looks like it’s changing within the patient’s disease, to be honest, also on the flipside of that argument, sometimes this next-generation sequencing will mostly contribute to adding anxiety and will not necessarily directly impact how a patient is treated. And this is particularly true in patients with PV and ET, where we’ll sometimes order these tests, and we get a bunch of mutations back, but we don’t know what to do with that information yet.  

And so, as a researcher – not a clinician – as a researcher, I think it’s very important to have that information so that we can then do studies and understand the patterns of mutations and how that affects outcome. But as a clinician, and you as a patient, you need to really be aware of how that’s going to impact the patient in front of you and how that may impact you as a patient. Do you want to know if you have these mutations if nothing can be done about it? So, I would say, take a moment to reflect upon what I said and also to ask your clinician, how is this information going to help me? Do I need to have this information?  

Maybe you want to have it done so that it’s in your record. But maybe you don’t necessarily want to know those results. And everybody’s very different. And I think it’s absolutely wonderful to talk to my patients about all the information. But there may be some patients that really are just, like, do the test but don’t tell me the results, because I know that I’m just going to be very anxious knowing that I have something that I can’t do anything about. So, just take a minute to talk about it with your doctors. I think that’s really important.  

Tips for Managing Lung Cancer Anxiety and Worry

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Tips for Managing Lung Cancer Anxiety and Worry from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel shares support resources to help ease anxiety and explains how multidisciplinary care teams, including palliative care, can support patients and family members.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

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Transcript:

Katherine:

Managing the worry associated with a diagnosis or concerns about progression can lead to anxiety and fear in some patients. So, why is it important for patients to share how they’re feeling with their healthcare team? And who all is in the healthcare team who would be able to help a patient?  

Dr. Patel:

So, the anxiety of cancer therapies, of CT scans, of tumor assessments, can be overpowering. And then the longer-term anxieties. Who’s going to care for me, who’s going to care for my family, am I doing the things that are important to me, are ones that weigh heavily on all of us.  

So, certainly, again, carrying these anxieties over a long time have adverse impacts. So, people who are more anxious may not sleep as well. They may lose weight. They may not be as robust. And so, all of those things weigh into our ability to give more treatment. So, we want people to be psychologically well. We have, generally now in our healthcare teams, a number of people who are there to help.  

And so, we have nurse navigators. Most cancer centers have a number of psychologists and psychiatrists that work with our teams. But more than that, even things like nutritionists and social workers make a significant impact. And then I’m surely lucky to work with a world-class palliative care team.  

So, these are doctors that really focus on symptoms of cancer, the toxicities of treatment. And we work together to ensure the best outcome for our patients.  

How Does CLL Affect the Immune System?

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How Does CLL Affect the Immune System? from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) expert Dr. Seema Bhat explains how a patient’s immunity is affected by the disease and strategies for management.  

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

Finally, our last question. One audience member would like to know more about how CLL affects the immune system, including wound healing, and how does CLL impact this? 

Dr. Bhat:

So, patients with CLL usually have a weaker immune system. The lymphocyte, which is the white cell, which is affected in CLL, is an important part for an immune system, and due to the presence of disease, these lymphocytes – although there are lots of them in patients with CLL, they tend to be non-functional. 

“Functionally incompetent,” that’s what they’re called. And it leaves the patient’s immune deficient and susceptible to a variety of infections. Also, the lymphocyte is component – the B lymphocyte is one component of immune system. There are other components like T lymphocyte, antibody, NK cells. There’s cross-dock between the B cells and what we call, the “microenvironment,” which is made of the T cells. This cross-dock is deficient in patients with CLL, again making them immune-deficient and susceptible to infection. So, that’s one impact on their immune system. 

Sometimes, there’s something else happening in the immune system where the immune system can go crazy, or wacky, and start attacking the patient’s own blood cells leading to, for example, decrease of hemoglobin or platelets, because these are immune complications. And also, due to a weak immune system, patients with CLL can have delayed wound healing, which also predisposes them to infection. 

So, being aware of these complications is important and using appropriate precautions can be very helpful. Again, because they have a weakened immune system, vaccines are very important. Using all measures to avoid infection, hand washing, staying away from patients, from people who are obviously sick, is very important. Sometimes, patients where we see they’re’ getting frequent infections, we can use what’s called, “IVIG,” intravenous immunoglobulin. These are pre-farmed antibodies which are injected into or infused into the patient at regular intervals every 4 to six weeks, which reduce the chance of these infections. 

Addressing Anxiety About CLL and COVID

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Addressing Anxiety About CLL and COVID from Patient Empowerment Network on Vimeo.

Many patients with chronic lymphocytic leukemia (CLL) worry about how they may be impacted by COVID. Dr. Seema Bhat shares advice for CLL patients who are anxious about being immunocompromised and what they can do to protect themselves

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

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Transcript:

Katherine:

What about worry and anxiety related to COVID and compromised immunity? What would you like patients to know? 

Dr. Bhat:

So, COVID has become another source of anxiety, unfortunately, for many of our patients, and rightly so. Our patients with CLL are considered immunocompromised, meaning that their immune systems do not work that well, which makes these patients very susceptible to different kinds of infections, COVID being one of them. And this was actually shown by some of the early COVID-related studies that showed a very high mortality in patients with CLL. 

This has improved now, mostly because now we are better equipped to handle COVID. We have COVID-directed medications available, but the major impact has been made by the vaccines. So, we highly encourage our patients to get vaccinated against COVID and keep up to date with the latest CDC guidelines. Also, we have Evusheld available, which is under emergency use authorization, and our patients with CLL, due to their weaker immune system, are eligible to get this, which adds an extra layer of protection for our patients. 

Also, it’s important to know that our test – if our patients test do test positive for COVID, they should let their team of doctors know immediately, since now we have monoclonal antibodies and pills that can be used to treat symptomatic COVID. 

Katherine:

That’s great information, thank you.  

CLL and Anxiety: How Your Healthcare Team Can Help

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CLL and Anxiety: How Your Healthcare Team Can Help from Patient Empowerment Network on Vimeo.

Many people with chronic lymphocytic leukemia (CLL) experience fear and anxiety after a diagnosis. Dr. Seema Bhat explains why it’s important for patients to share how they are feeling with their healthcare team.

Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.

See More from Thrive CLL

Related Resources:

What Happens During CLL “Watch and Wait”

What Happens During CLL “Watch and Wait”?

Addressing Anxiety About CLL and COVID

 Where Can CLL Patients Access Financial Support

Transcript:

Katherine:

Many people with CLL will experience fear and anxiety, whether it’s the stress of being in “watch and wait” or worrying about regression. Why do you feel it’s important for patients to share how they’re feeling with their healthcare team? 

Dr. Bhat:

So, one of the important things to know about CLL is that CLL, at this point of time, it’s not a curable disease. It is a lifelong disease. Patients will have to deal with CLL for the rest of their life in some form or other, either on watchful waiting, or on active treatment, or if they’ll complete a treatment, they’ll have this lurking fear of relapse at any time. A large part of what I do is to help my patients understand what it means to live with CLL. And, of course, anxiety is a big part of that living with CLL. 

Although at this time, we’re unable to cure our patients with CLL, I want my patients to understand that it’s very treatable, treatments are very well-tolerated with low toxicity, and patients live a long life. They can have good, productive, and active life. They should ask their care team about resources for social, emotional, and physical support. They should let them know about their concerns, talk about their feelings.  

Katherine:

How can a social worker provide support, and are there other healthcare team members who might be able to help? 

Dr. Bhat:

So, yes, patients are on a rollercoaster – emotional rollercoaster with this diagnosis. With this diagnosis come lots of unknowns. Worries about possible shortened life span, anxiety over treatment, and effects of treatment. So, there’s lots to deal with, and lot of uncertainty, which causes a feeling of hopelessness for these patients. So, psychological support is very important. That’s where the role of social worker comes in. 

We get them involved to help patients deal with the diagnosis, and social workers – they can provide patients with tools to cope with this life-changing event. They use life tools like encouraging positive thinking, mindfulness, being aware of what the patient can control involving faith and family, and also involving self-care. 

That’s where we see the role of the whole team as such. If patients are having more difficulties, we can have other members of a team, like a mental health provider, connect with our patients. Social workers and other members of the team can help our patients get connected to support groups, or even to other patients who have had similar experiences.