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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START HERE: Bridging the Follicular Lymphoma Expert and Patient Voice

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Follicular lymphoma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Follicular Lymphoma program, which aims to close the gap in the expert and patient voice to build empowerment.

START HERE Follicular Lymphoma Program Resources

The program series includes the following resources:

  •   START HERE Patient-Expert Q&A Webinar with expert Dr. Sameh Gaballa moderated by a cancer patient
  •   START HERE Library of resources has kicked off with a resource guide filled with a newly  diagnosed checklist, diagnostic tests, glossary of terms, follicular lymphoma educational and support resources, along with expert tips
  •   Your START HERE 90-Day Plan personalized 90-day patient plan with resources from trusted advocacy partners
  •   START HERE Activity Guide a downloadable, printable support resource packed with information and activities to educate, empower, and support follicular lymphoma patients and care partners in their journeys through care
  •   START HERE Resources of PEN text alerts to receive personalized support from PEN Empowerment Leads, blogs, and downloadable guides

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the Patient-Expert Q&A webinars, follicular lymphoma experts Dr. Sameh Gaballa from Moffitt Cancer Institute and Dr. Kami Maddocks from Ohio State University Wexner Medical Center shared their expert knowledge to help patients and care partners fortify their knowledge and confidence. Cancer patients and Empowerment Lead Lisa Hatfield moderated the discussions and shared some of her perspectives as a patient. The follicular lymphoma experts and cancer patient provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Dr. Maddocks advice

The concept of watch and wait is a key point that was covered in the webinar. Dr. Gaballa shared how he explains watch and wait to patients. “But then when you explain to them, “Well, you see, you don’t have a lot of disease, those studies have already been done in the past where patients who were treated or not treated, the survival was the same, so there, you might get side effects from the treatment, but not necessarily have benefits. And in the future, should this need to be treated, we have a lot of things to do.””

The main predictor of follicular lymphoma prognosis is called POD24. Dr. Gaballa explained the significance of this. “Unfortunately, the best predictor of prognosis for follicular lymphoma, you would know about retrospectively, it’s something called POD24, progression of disease in 24 months. Meaning that if you have a patient who’s treated with chemotherapy and immunotherapy, and then they go into remission, and then they relapse again in less than 24 months, progression of disease within 24 months, those are the, those represent about 20 percent of follicular lymphoma patients, and those represent a high-risk group of patients.”

Dr. Gaballa advice

Follicular lymphoma patients should try to remain aware of symptoms of disease progression or transformation. Dr. Gaballa discussed some symptoms to be on the lookout for. “…So like the sweats, the fevers, the weight, loss of weight, loss of appetite, these are also sometimes things to look out for. Not necessarily, they don’t always mean that it’s transformed disease. It can also be that the follicular lymphoma is also progressing and might need to be treated as well.”

Lymph node involvement should be monitored as well. Dr. Gaballa explained, “…if you notice a lymph node that in your neck or under the armpits or the groin areas, if they’re growing, then that needs to be evaluated. I mean the patients should expect that those will be growing, they will grow. But they grow over months and years. They don’t grow over weeks.”

Follicular lymphoma clinical trials continue to bring exciting opportunities with potential improved treatments with a future that looks hopeful. Dr. Maddocks shared an update about a possible trial for bispecific antibodies. “…we’re also looking at opening a trial for frontline follicular lymphoma that looks at the use of bispecific antibodies. So I think that’s very exciting, because in general, it’s a well-tolerated therapy. And I think if it gives us a chance to produce very good outcomes, but without the toxicity of chemotherapy in the frontline setting, that to me is super exciting for patients. We’re also looking at different bispecific antibodies. So they currently approved one target CD20. We have a CD19-targeted bispecific antibody that I also think is exciting to look at the potential for different targets because then once a patient has had one, you’re targeting something different, and the thought is that they might still be able to respond to a different one.”

It’s important for patients to share about their symptoms during watch and wait. Dr. Maddocks explained her perspective about patient communication. “So we have a 24-hour triage line. I recommend that if patients have a question or concern, it’s better to ask us because if we don’t know about it, we can’t help is the first thing…I think people should always call with any signs, symptoms, concerns, and then it can be addressed.”

Some blood cancer patients may be surprised to learn about the potential for skin vulnerability with some cancer treatments. Dr. Maddocks discussed guarding against secondary cancers and increased vulnerabilities. “I think patients definitely should be wearing sunblock, because we know that a lot of patients with blood cancers can get secondary malignancies. So being careful of being…we also know, I should say, even patients who are getting treated can have a more sensitivity to the sun. So being careful with sun precautions, either avoiding the sun or wearing sunblock, making sure you’re covered when you go outside. I’ll even say I’ve seen a few patients who during treatment have gotten bad windburns. So your skin definitely can be more sensitive when you’re receiving therapies.”

Some program participants provided valuable testimonials about the START HERE Follicular Lymphoma Patient-Expert Q&A webinars.

  • “I fully understand the potential for transformation and early recurrence, but it was wonderful to hear the hopeful and positive tone of this webinar. Thank you!”
  • “I appreciated that he mentioned that the science behind FL treatment is continuing to evolve at a rapid place.”
  • “Much better comprehensive understanding of my disease, hopefulness for the future, and a better knowledge base to ask questions and advocate for myself.“
  • “Things were explained simply and thoroughly. And I like the 30-minute format. Great presentation. I look forward to more.”
  • “This was a great program, I learned so much. The fact that FL has many treatments in the pipeline. The doctor is an excellent communicator.”

Many other questions were raised during the Follicular Lymphoma Patient-Expert Q&A webinars. We hope you can use these valuable follicular lymphoma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner. 

What Are Follicular Lymphoma Considerations for Watch and Wait?

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What Are Follicular Lymphoma Considerations for Watch and Wait? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients and providers need to be aware of during watch and wait? Expert Dr. Kami Maddocks from Ohio State University discusses what factors are monitored during watch and wait, common symptoms to be on the lookout for, and who patients can contact about concerns.

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

 What Should Follicular Lymphoma Patients Know About Remission

 What Can Follicular Lymphoma Patients Expect With Remission

Transcript:

Lisa Hatfield:

One person is saying, “I’m in watch and wait currently. Is it possible that I’ll never need treatment, or how long do you wait, and what am I waiting for?”

Dr. Kami Maddocks:

That is a great question. There are patients in watch and wait who will never require treatment. Watching and waiting, we’re watching blood counts, watching the size of lymph nodes. So things that we’re watching for and you’re watching for are changes in lymph nodes size, so are they growing? Are they becoming more symptomatic? Is there a rapid change in them? Are we seeing a change in the blood counts? Are patients starting to have a drop in their blood counts which can happen if somebody’s spleen is getting bigger if they have lymphoma in their bone marrow and that’s progressing, watching for if the lymph nodes are causing a problem, you notice somebody have one in a location like the neck that’s starting to make swallowing difficult or changes in voice, that’s something you want to treat. And then there’s something called B symptoms that we watch for. So if the patient had night sweats…

…night sweats are like drenching night sweats, soak the bed, have to change clothes potentially sheets, fevers, so daily fevers that occur, or significant or rapid weight loss for no reason. All those are kinds of things that we want people to watch for. And we discussed a little bit too if patients start having extreme fatigue, not feeling well, not being able to eat, not having appetites if they have a new pain. And again everybody can have aches and pains. But if you’re having pain that’s not going away or some sort of symptom that’s not improving, those are all things we want to definitely have checked out.

Lisa Hatfield:

I imagine with some of your patients in that mode, there’s what I call the mental gymnastics of thinking, okay, I have this cancer, but I can’t do anything about it, and these symptoms are really vague that come up. So do you allow your patients just to contact you if they’re saying, “I think I have these symptoms, I’m nervous about this.” Can they come in and have a visit with you or contact you at any time?

Dr. Kami Maddocks:

Oh, yes. So we have a 24-hour triage line. I recommend that if patients have a question or concern, it’s better to ask us because if we don’t know about it, we can’t help is the first thing. Usually, we talk to the patient and say, “Okay, how long has this been going on” and see if it’s a red flag like you need to come in right now or is this something that maybe we might recommend getting a set of labs to look at certain labs to see if they’ve changed at all.

We might say, “Okay this seems like something we should actually see you for, but I want CT scans too so let’s order them, so I can have that information when you see me.” So, yeah, I think people should always call with any signs, symptoms, concerns, and then it can be addressed. Now, there are some things that we might say, “Okay, we think based on everything that new cough is probably more likely a respiratory infection. It’s okay to see your PCP.” But we also go through that as well. So yes, I think it’s always best to check in and not let something go.

Lisa Hatfield:

I’m guessing that’s challenging for some of those people in that mode, just thinking, well, I’m just waiting here, so that’s got to be a little bit more challenging.

Dr. Kami Maddocks:

I think you’re absolutely right. And sometimes there’s a benefit to…certainly like rituximab (Rituxan) therapy when there is a disease there, and it is a challenge to think that it’s not being treated.

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What Can Follicular Lymphoma Patients Expect With Remission?

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What Can Follicular Lymphoma Patients Expect With Remission? from Patient Empowerment Network on Vimeo.

For follicular lymphoma patients, what can they expect to happen with remission? Expert Dr. Kami Maddocks from The Ohio State University explains how remission can vary among patients and shares an overview of potential treatments.

See More from START HERE Follicular Lymphoma

Related Resources:

What’s the News on Follicular Lymphoma and Bispecific Antibodies

 What Should Follicular Lymphoma Patients Know About Remission

 What Are Follicular Lymphoma Considerations for Watch and Wait

Transcript:

Lisa Hatfield:

So one person says, “I’m currently in remission, what can I expect in my future? How long does remission last? And is treatment after remission the same as initial treatment?”

Dr. Kami Maddocks: 

So that is very dependent on what a patient receives. So there are different kind…of a lot of our treatments we look at median times. When patients have relapse, that can be a little bit different for single agent antibody therapy versus antibody in combination with chemoimmunotherapy for how long that treatment remission lasts. As far as we don’t typically reuse a treatment once we have used it before, although there is data in follicular lymphoma when patients receive single agent antibodies. So rituximab (Rituxan) alone, if they do well with that single agent immunotherapy for a long period, they may receive re-treatment with just that so long as they don’t have disease that requires more aggressive treatment.

Lisa Hatfield:

So is that more likely to happen then if a patient maybe wasn’t refractory to it, if they just stopped using it for some reason? Would that be more common for that to happen to go back on that same drug?

Dr. Kami Maddocks:

So with rituximab, we use it alone and in combination. So there are some patients that don’t necessarily have what we call a large tumor, and they don’t have a lot of lymph nodes, or they don’t have large lymph nodes, but they might be symptomatic from them, or the location might be problematic. And so once these lymph nodes get a certain size, they usually don’t have as good of a response to single agent antibody therapy. But there are patients who have small lymph nodes that aren’t as big but again are causing a problem that can get completely…you give a short course of the rituximab, and it can last for a very long time and then you would consider again using a short course of that rituximab.

The chemotherapies we have, we don’t reuse chemotherapy, for the most part. Some of that, for a while, there was bendamustine (Treanda) if patients got five, six, 10-year remissions out of it. Sometimes they would re-get that chemotherapy. But I think we’ve just seen so many newer therapies approved in the last five six years. Like the bispecifics, the EZH2 inhibitors, lenalidomide (Revlimid), CAR T, we had different PI3K inhibitors available for a while. And so I think it was just that you had the ability to offer a patient something that they never had before, and that is more appealing.

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What Should Follicular Lymphoma Patients Know About Recurrence?

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What Should Follicular Lymphoma Patients Know About Recurrence? from Patient Empowerment Network on Vimeo.

When follicular lymphoma recurs, what should patients expect? Expert Dr. Kami Maddocks from The Ohio State University explains recurrence and how recurrence can differ among patients.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

So we have a person asking, “Does lymphoma recurrence always happen in an aggressive manner?”

Dr. Kami Maddocks:

That’s a great question. The answer is no on that, and, in fact, lymphoma recurrence doesn’t always need to be treated just because it does recur. So when you look at follicular lymphoma, there are patients who are in a watch-and-wait period. When they’re diagnosed, they’ll eventually progress to requiring treatment or most…well, there are patients who might not. Once they require treatment, they get a time period without…most of them will get a time period without disease.

There are patients who will…that you’ll find lymph nodes growing on CT scans maybe that you’re doing monitoring for, but the patient will otherwise feel well. They won’t have, necessarily, very big lymph nodes. Their blood counts will be okay and you may say, okay, just like you had watch-and-wait to start with, we’re going to watch and wait right now with this relapse, because you don’t have any indications that are saying we need to treat this.

And again that doesn’t necessarily make our patient live longer. So you want to balance their quality of life and toxicities of treatment. There are patients who will…when they relapse, they will have indications for treatments, and then there are patients who will potentially have more aggressive relapses and be very symptomatic or have larger lymph nodes.

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What Are Predictors of Follicular Lymphoma Relapse or Transformation?

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What Are Predictors of Follicular Lymphoma Relapse or Transformation? from Patient Empowerment Network on Vimeo.

Does follicular lymphoma relapse or transformation have notable predictors? Expert Dr. Kami Maddocks from The Ohio State University shares common symptoms that may signal relapse or transformation and shares her perspective when consulting a follicular lymphoma specialist can be especially helpful. 

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

…for follicular lymphoma, what are the predictors of transformation and relapse, and what symptoms should patients be looking out for and tell their doctor about?

Dr. Kami Maddocks:

Yeah, so I think this is a great question. As far as just in everybody predicting when they’re going to progress, when they’re going to relapse, we don’t actually have great ways to do that right now. One of the things that has been shown to potentially predict things is for patients who do receive treatment if they have an early relapse, that suggests that their disease is going to behave more aggressively. As far as looking for relapse, things that people want to look for, not all patients will have symptoms but certainly if patients feel any lumps or bumps if they start…I like to tell my patients if you…patients usually know if something’s wrong.

So everybody’s going to have aches and pains, everybody’s going to have the normal infections, but if you’re not feeling well, significant fatigue, night sweats, fevers are always something that we look for but that’s not something that everybody has. New pains, not feeling well, just kind of the inability to feel like you can keep up with what you’re doing daily, those are always things that you should at least call in to see if you should be evaluated. It’s important to know that follicular lymphoma patients are followed. As I said, you are followed forever. We do also watch your blood counts to make sure that we’re not seeing changes in blood counts, changes in lactate dehydrogenase which is a non-specific marker but something that we follow in lymphoma.

Lisa Hatfield:

And one follow-up to that question also. So are there follicular lymphoma specialists? If a patient is maybe in an area that doesn’t have a large academic center or a large cancer institution, do you recommend they see somebody who specializes in follicular lymphoma or can they see even for a consult or do you think that their local hematologist oncologist is very familiar with that themselves? Do you have recommendations?

Dr. Kami Maddocks:

Yeah, so that’s a great question. Local, I think follicular lymphoma is common enough that a lot of our general oncologists who see everything see follicular lymphoma. I think it never hurts, of course, to ask about clinical trials. So if that’s something that might be available. If it’s available, it might be worth going to a specialist for.

If there’s concerns, I think it’s always a good idea to get a second opinion to make sure that a patient is comfortable. I think if a patient seems to have a more aggressive behaving follicular or if they’ve had a lot of different treatments, that’s also if you’re seeing a general oncologist at a time, that it’s good to see if there are clinical trials or if a specialist has anything new or different.

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What Should Follicular Lymphoma Patients Know About Remission?

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What Should Follicular Lymphoma Patients Know About Remission? from Patient Empowerment Network on Vimeo.

What does follicular lymphoma remission mean, and what should patients know about it? Expert Dr. Kami Maddocks from The Ohio State University explains remission, functional cure, and immunosuppression.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

This patient is asking if you are in remission for a long period of time after follicular lymphoma treatment, can you technically be cured in some cases, or are you considered to still have the cancer?

Dr. Kami Maddocks:

So that is a great question. There’s a term that’s used in follicular lymphoma called a functional cure. So we have patients that essentially get treated, and they live long enough that they die from something else without their follicular lymphoma ever relapsing. So while we say from what we know if somebody lives long enough that this disease is likely going to relapse at some point, there are patients that will be treated, and the disease will never come back.

Lisa Hatfield:

Can patients facing follicular lymphoma be considered immunocompromised if they’re in remission?

Dr. Kami Maddocks: 

I think this kind of goes back to when we talked about the immune system recovery that this can be a little bit of a complicated question, because it depends a little bit on the treatment that they got, how far out from the treatment they are and how many treatments they’ve had in the past. So, in general, if I have a patient that has received therapy, their counts have recovered, they in general look like…their lab work looks like their immune system, then in general I would say that they have an immune system that’s likely similar to somebody who didn’t have the follicular lymphoma, and they’re going to be able to fight infections and respond to vaccines.

I think what we do know is sometimes when patients get rituximab maintenance or obinutuzumab (Gazyva) maintenance or some of the chemotherapies there are some patients that can have a longer time that they’re immunosuppressed. So I think this is always something that’s good to ask your doctor for. In your specific situation with the treatment you received, when do you expect to have a regularly functioning immune system?

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What Should Follicular Lymphoma Patients Know About Beauty Products?

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What Should Follicular Lymphoma Patients Know About Beauty Products? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients need to know about beauty products? Expert Dr. Kami Maddocks from The Ohio State University explains beauty products that can help protect patients from complications and secondary malignancies.

See More from START HERE Follicular Lymphoma

Related Resources:

Understanding Immune System Recovery Post Follicular Lymphoma Treatment

 What Follicular Lymphoma Treatment Side Effects Should Patients Expect

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Transcript:

Lisa Hatfield:

Another good question, and this comes up with many blood cancers or a lot of cancers. Should patients be mindful of beauty products such as shampoos, soaps, and sunblocks when in remission for follicular lymphoma?

Dr. Kami Maddocks:

That’s another great question. I am not aware of any data connecting those specific things. I think patients definitely should be wearing sunblock, because we know that a lot of patients with blood cancers can get secondary malignancies. So being careful of being…we also know, I should say, even patients who are getting treated can have a more sensitivity to the sun.

So being careful with sun precautions, either avoiding the sun or wearing sunblock, making sure you’re covered when you go outside. I’ll even say I’ve seen a few patients who during treatment have gotten bad windburns. So your skin definitely can be more sensitive when you’re receiving therapies.

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