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

Related Resources:

What Are the Signs It Is Time to Treat Follicular Lymphoma

 How Can I Manage Anxiety After Follicular Lymphoma Diagnosis

 What To Do When Newly Diagnosed With Follicular Lymphoma

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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What To Do When Newly Diagnosed With Follicular Lymphoma?

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What To Do When Newly Diagnosed With Follicular Lymphoma from Patient Empowerment Network on Vimeo.

What should newly diagnosed follicular lymphoma patients take as next steps after diagnosis? Cancer patient Lisa Hatfield and Dr. Matthew Matasar from Memorial Sloan Kettering Cancer Center share advice for patients to be proactive in their care.

See More from START HERE Follicular Lymphoma

Related Resources:

What Are the Signs It Is Time to Treat Follicular Lymphoma

 How Can I Manage Anxiety After Follicular Lymphoma Diagnosis

 Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Transcript:

Lisa Hatfield:

When you are first diagnosed with follicular lymphoma, you may not know what to do or what next steps to take. Dr. Matthew Matasar from Memorial Sloan Kettering Center shares what he encourages all his patients to do.

Dr. Matthew Matasar:

Everybody should have access to a second opinion pathology review.  This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.  

Lisa Hatfield:

As Dr. Matasar says, you can ask your physician or community oncologist to send your diagnosis test results to another institution, particularly one with a lymphoma expert. Let’s listen as Dr. Matasar continues: 

Dr. Matthew Matasar:

You’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful.

Lisa Hatfield:

The lymphoma expert that you seek a second opinion from may agree with your local oncologist and suggest collaborating with him/her on your care OR may suggest an alternative such as newer medications your local oncologist may not be up to date on or offer clinical trials. When you have this second opinion consult, be sure to ask questions like “Are there alternatives to the therapy my local doctor or you are suggesting?”, “What is the difference between my options?” and “Are there clinical trials or new drugs that I might be eligible for?”  We’ll go back to Dr. Matasar for his last recommendation now: 

Dr. Matthew Matasar:

Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.

Lisa Hatfield:  

By sharing with your doctor a little bit about you and your personality, you can set yourself up for success to get the best recommendations as possible. We hope these tips help you feel empowered as you begin your follicular lymphoma journey! 

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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

Related Resources:

What Are the Signs It Is Time to Treat Follicular Lymphoma

 What To Do When Newly Diagnosed With Follicular Lymphoma

 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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What Are the Signs It Is Time to Treat Follicular Lymphoma?

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What Are the Signs It Is Time to Treat Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What signs do follicular lymphoma patients show when it’s time to begin treatment? Cancer patient Lisa Hatfield and expert Dr. Jane Winter from Robert H. Lurie Comprehensive Cancer Center share some common symptoms of disease progression and advice for optimal care.

See More from START HERE Follicular Lymphoma

Related Resources:

How Can I Manage Anxiety After Follicular Lymphoma Diagnosis

 What To Do When Newly Diagnosed With Follicular Lymphoma

 Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

Transcript:

Lisa Hatfield:

If you are living with follicular lymphoma and are currently in the watch and wait stage, you may wonder what symptoms you and your doctor are looking for that mean it’s time to start treatment. These signs and the timing may vary person-to-person, so it’s important to have a conversation with your doctor. Listen as Dr. Jane Winter from Robert H. Lurie Comprehensive Cancer Center at Northwestern University explains what symptoms she looks for to indicate treatment should start. 

Dr. Jane Winter:

…The trigger for treatment is a big enough mass that it’s pushing on something important, for example, the ureter, which is the tube from the kidney to the bladder. And if we have a large mass that either wraps around that ureter or just pushes on it sufficiently to block drainage, it’ll result in a decline in kidney function. So, a rising creatinine may be the signal that things are progressing, and it’s time for treatment. Sometimes, the follicular lymphoma involving the lining around the lung can lead to what we call a pleural effusion, fluid in that space. It’s a potential space between the lung and the chest wall.  

So, an accumulation of fluid there restricts the ability to take a deep breath, and that may be an indication for treatment, or just the overall total mass of disease is becoming such that it results in fatigue and is beginning to impair the quality of life and what we call performance status. So, those are triggers for treatment. Decline in blood counts is another. So, follicular lymphoma very commonly involves the bone marrow, and as it progresses and replaces the normal blood cells, it will result in a decline in the red cell count, the hemoglobin that carries oxygen.

So, it results in tiredness or shortness of breath, or a low white count such that the numbers of infection fighting cells is compromised…most often, it would be just a mild anemia that flags progression and bone marrow involvement. So, all of those. So, multi-disease, disease that causes symptoms, disease that causes fluid accumulation around the lung or obstruction of some important organ. These are all the signs that it’s time to think about treatment.

Lisa Hatfield:

As you’ve just heard, there are a variety of symptoms that can signal that it’s time to start treatment. This is why it’s crucial that you go to all appointments, especially ones where tests/labs are done, so your doctor has the most up to date information/data on your lymphoma. Also, be honest about what symptoms you are experiencing/how you are feeling. No symptom is too small and is important to disclose as that can show it’s time to start treatment. 

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What Are Potential Comorbidities in Follicular Lymphoma?

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What Are Potential Comorbidities in Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

 What can follicular lymphoma patients expect for potential comorbidities? Cancer patient Lisa Hatfield and expert Dr. Sameh Gaballa from Moffitt Cancer Center explain some common health conditions that follicular lymphoma may experience.

See More from START HERE Follicular Lymphoma

Related Resources:

Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

 How Does Watch and Wait Work During Remission

 Relapsed and Refractory Follicular Lymphoma _ What Is It

Transcript:

Lisa Hatfield:

What are comorbidities? Comorbidities are additional health conditions that may coexist with follicular lymphoma. These can be pre-existing or develop as a consequence of the lymphoma itself or its treatments. Recognizing and managing these comorbidities is crucial for comprehensive patient care. While lymphoma is a blood cancer, it can influence various organ systems, potentially leading to comorbidities such as cardiovascular issues, infections, or autoimmune disorders.Listen as Dr. Sameh Gaballa from Moffitt Cancer Center discusses the risk of secondary cancers, which are a type of comorbidity, for follicular lymphoma.

Dr. Sameh Gaballa:

So that’s always a concern, and it depends on what treatment they had. So chemotherapy that can potentially damage DNA can lead to second malignancies, including things like acute leukemia. Luckily, that’s not a high risk. That’s a rare side effect from some of those chemotherapies. Some of the pills can do that as well. Something like lenalidomide (Revlimid) can sometimes have second malignancies. But we’re talking about rare incidences, and the benefits usually would outweigh the risks. But it’s not with all treatments, meaning some of the other immune therapies that do not involve chemotherapy would not typically be associated with some of those second malignancies. So it just really depends on what exactly the treatment you’re getting.

Lisa Hatfield:

As Dr. Gaballa says, often secondary cancers are rare incidences and the benefits of treating your follicular lymphoma usually outweighs the risk of not treating or developing a comorbidity. Before deciding on a treatment option, be sure to discuss with your healthcare team about the long-term risks of comorbidities and management of those comorbidities. This may help you narrow down treatment choices or prepare for the future. 

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Relapsed and Refractory Follicular Lymphoma | What Is It?

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Relapsed and Refractory Follicular Lymphoma | What Is It? from Patient Empowerment Network on Vimeo.

What is relapsed and refractory follicular lymphoma? Cancer patient Lisa Hatfield explains the disease status and what these patients often commonly experience.

See More from START HERE Follicular Lymphoma

Related Resources:

Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

 How Does Watch and Wait Work During Remission

 What Are Potential Comorbidities in Follicular Lymphoma

Transcript:

Lisa Hatfield:

According to the Lymphoma Research Foundation, The term “relapsed” refers to disease that reappears or grows again after a period of remission. The term “refractory” is used to describe when the lymphoma does not respond to treatment or when the response to treatment does not last very long. 

Although many patients go into a remission that lasts for years after their initial treatment, the disease can often return. For patients whose lymphoma relapses or become refractory, second-line therapies, which are treatments given when first therapy does not work or stops working, are often successful in providing another remission. 

However, for some patients whose lymphoma relapses do not need treatment right away, and an “active surveillance” approach might be used. With this strategy (often called “watch and wait”), the person’s overall health and disease are monitored through regular checkup visits and lab and imaging tests. This may sound scary, but it’s better to wait than receive unnecessary treatment that could come with side effects. 

If a patient starts to develop lymphoma-related symptoms or there are signs that the disease is progressing based on testing during follow-up visits, then treatment may begin again. The same therapies used for newly diagnosed patients can often be used in patients with relapsed/refractory FL. Depending on the timing of relapse, a patient’s doctor may repeat the same agent as  their initial treatment. Treatment for relapsed/refractory FL is based on a patient’s age, overall health, symptoms, and the duration of remission from the last treatment they received. 

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How Does Watch and Wait Work During Remission?

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How Does Watch and Wait Work During Remission? from Patient Empowerment Network on Vimeo.

What happens with watch and wait during remission? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope explain remission and what patients can expect for monitoring and appointments during periods of remission.

See More from START HERE Follicular Lymphoma

Related Resources:

Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

 Relapsed and Refractory Follicular Lymphoma _ What Is It

 What Are Potential Comorbidities in Follicular Lymphoma

Transcript:

Lisa Hatfield:

Once you complete initial treatment and your doctor tells you you are in remission or no further treatment is needed at this time, you may feel both happy and/or concerned about how frequently you will be seen during this remission period. Perhaps it was a relief to go to your doctors’ appointments and hear everything is looking good – or on the flip slide, you may be glad to get back to “normal” life and not have your schedule revolve around appointments. Either way, you will be seeing your doctor at regular intervals. Listen as Dr. Tycel Phillips from the University of Michigan Rogel Cancer Center explains what he does with his patients: 

Dr. Tycel Phillips:

The recommendation is really just clinical observation, meaning what I call well-being visits. Meaning I will see you in clinic at least every three months for the first year after completion of therapy. We do a system assessment, we’ll do a physical exam, we’ll do labs. Unless there is really something that at the completion of therapy that I’m concerned about, we won’t typically do any imaging.

We reserve imaging until there is a concern at some point, whether you have symptoms, there’s a lab issue, or there’s some other finding that comes up that means that we have to repeat pictures. So those visits I’ll do typically every three months for the first year, spaced out that every four months for the second year, post-treatment. And then every six months up until about year four. And then it’ll become a yearly visit thereafter, as long as you continue to remain well without symptoms and nothing on an exam that’s concerning.

Lisa Hatfield:

As Dr. Phillips says, you can expect to see your doctor every 3 months for the first year of remission  but always discuss this with your healthcare team as your hospital/treatment center may have a different cadence. The amount of follow-up depends on factors such as the treatment you have had,  how long it’s been since you completed treatment, and if you were treated as part of a clinical trial. 

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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects from Patient Empowerment Network on Vimeo.

How can communication help in managing follicular lymphoma side effects? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope share advice and benefits of open communication about side effects.

See More from START HERE Follicular Lymphoma

Related Resources:

How Does Watch and Wait Work During Remission

 Relapsed and Refractory Follicular Lymphoma _ What Is It

 What Are Potential Comorbidities in Follicular Lymphoma

Transcript:

Lisa Hatfield:

Though doctors can observe some patient information in blood tests and other lab work, they  also must hear from their patients. Patients are the ones who know how you’re feeling, and this is why it’s vital for you to communicate with your doctor about any symptoms and side effects that you experience. Treatment can often be adjusted to minimize symptoms and side effects to provide patients with optimal quality of life while fighting your cancer. Listen as Dr. Tycel Phillips discusses further.

Dr. Tycel Phillips:

For the most part, there are logical next steps that we can implement to either eliminate the side effects or hopefully prevent them from future treatment regimens. And also, other concerns that you may have. I mean, you only get one life. And this is your body. 

I try to explain to my patients, “I don’t want you to wait until the next visit if you have issues.” I mean, we need to sort of manage these in real time. Even things we don’t take care of right then and there, again, it gives us a heads up and a head start to try to take care of these problems the next time you come to the clinic.

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