Tag Archive for: COVID-19

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips answers a patient question regarding relapsed follicular lymphoma and discusses available treatment approaches for relapsed patients.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

Dr. Tycel Phillips reviews how follicular lymphoma patients are monitored during remission, including frequency of office visits.

Monitoring Follicular Lymphoma Patients During Remission

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

We received this question from an audience member prior to the program. Angela asks, “What if I relapse after treatment? What are my options then?”

Dr. Phillips:                 

So, a lot of that, again, depends on the timing. If you relapse early, obviously whatever we gave you in the frontline we would not repeat. And again, if it’s within the 24-month period, again, that takes you on the road of POD24. Wherein patients who are fit enough, it would take you to a route where you would actually probably get a transplant. It’s consolidation to extend our true progression sabbatical.

If you relapse after 24 months, that would really depend on what you received in the frontline because some of these agents can be repeated. If we don’t repeat what you’ve had in a frontline setting – so again, if you’ve got R chemo, then a second line setting, normally what we would do now, based on published data from the augment study, is we would typically treat these patients with Rituximab and lenalidomide, which is that oral medication.

That’s typically if you did receive lenalidomide in the frontline setting and you would not want to repeat that, then we would typically give you R chemo in a second line setting. Again, in most of those situations, it would be RCP or Bendamustine and Rituximab.

Monitoring Follicular Lymphoma Patients During Remission

Monitoring Follicular Lymphoma Patients During Remission from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips reviews how follicular lymphoma patients are monitored during remission, including frequency of office visits. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

If someone receives treatment and then goes into remission, how are they monitored?

Dr. Phillips:                 

So, there’s a couple of different ways you can go about it.

Historically, what we would do is we would actually sometimes get CAT scans. But we’ve sort of pulled back from that in recent years. So, as of right now, the recommendation is really just clinical observation, meaning what I call well baby 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.

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips provides an overview of follicular lymphoma treatments available to newly diagnosed patients and reviews the pros and cons of oral regimens and stem cell transplant. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

Now that we’ve discussed factors that can impact treatment decisions, would you walk us through the currently available follicular lymphoma treatment approaches? And who they might be right for?

Dr. Phillips:                 

Sure. So, we’ll start with the newly diagnosed or untreated patient. So, again, if you’re newly diagnosed or untreated, your options are the monoclonal antibody, Rituximab. Again, that’s a CD20 monoclonal antibody.

That is typically given once weekly for four weeks and can be repeated, if need be, after a break. And that’s usually reserved for patients who have minimal symptoms, low burden disease. Because, again, data has shown that the bulkier the disease, you’re likely not to have a very durable or deep response with just simulating Rituximab. Additional options include Rituximab plus chemotherapy.

So, we have regimens such as CDP, which is Cytoxan, vincristine, and prednisone. Cytoxan and vincristine being a steroid, prednisone being — sorry, Cytoxan and vincristine being a chemotherapy agent, and prednisone being a steroid. We have our bendamustine, bendamustine being a chemotherapy agent. There’s R-CHOP, which is Cytoxan, vincristine, Adriamycin, and prednisone. And sometimes that is reserved, because unlike the other two, R-CHOP can only be given once because of the accumulation of the anthracycline.

You can only have so much of that in a lifetime before you run a risk of cardiac toxicity.

Katherine:                  

Oh.

Dr. Phillips:                 

And also, R-CHOP as of right now is a standard of care for diffuse large B-cell lymphoma. Which every patient with follicular lymphoma has a chance of transforming into diffuse large B-cell lymphoma at some point. So, we tend to try to reserve R-CHOP if we can. Additionally, more recently, there was a study called Relevance, which evaluated RPMO versus an agent called lenalidomide plus Rituximab, what we call R squared.

So, it was designed as a superiority study, but what came out of it is R squared is probably equivalent, not better, than R chemo. So that is also an option up front. With lenalidomide it’s a little bit different than the other agents, which all give it intravenously, meaning through the vein. But lenalidomide is an oral medication, that you would take 21 days on, and seven days off. And that’s given in conjunction with the Rituximab. And you typically would take that for 12 cycles, or about a year of treatment.

Whereas the chemotherapy regimens that I mentioned before, are typically given for six cycles. Meaning you’ll be taking it for a duration of 18 weeks or 24 weeks. So around four and half to six months for the chemotherapy. Thereafter, it’s a bit controversial, but some patients can then transition to what we call Rituximab maintenance.

Where you would get Rituximab every other month for a period of two to three years. Typically, two years, as a way to delay the return of the cancer. So, R maintenance we know of improves your progression of survival, so the time until the cancer comes back. And there is no survival benefit with maintenance at this point. So, it is in some ways a bit controversial. Especially now, given the pandemic.

Katherine:                  

What about stem cell transplant? Is that an option?

Dr. Phillips:                 

So, for up front, that’s usually not something that we typically do. So, for stem cell transplantation, there are two types of stem cell transplantation. There’s one called an Autologous Stem Cell Transplantation, which is basically really a stem cell rescue.

You get a high dose of chemotherapy after stem cells are collected from you and those stem cells are given back to rescue your body from the chemo. That is typically reserved for what we call high risk patients. So, we give you an initial up front chemotherapy regimen. And if your cancer comes back within less than 24 months of completion of that therapy, you fall into what we call a POD24 category. Which means Progression of Disease within 24 months.

We do know those patients are at higher risk, than patients who stay in remission for at least 24 months or longer. So, if we look at overall survival for those POD24 patients, about half of those patients will succumb to their disease within a five-year period. Which is much different for what we see with the standard for follicular lymphoma patients. So, and that POD24 category it does appear that Autologous Stem Cell Transplantation is beneficial in that patient population. As well as an Allogenic Stem Cell Transplant. So, an allogenic transplant is when you get immune cells from another donor.

So, “allo” meaning from a different person. So, in that sense, you get sort of temporized, and they would give you donor lymphocytes. And those lymphocytes themselves would try to fight off your cancer. So, an Auto transplant is mainly just chemo; an Allo transplant, the donor cells help fight off the cancer.

Katherine:                  

Right.

Dr. Phillips:                 

There are complications to both, which is why they’re not typically given up front. The Allo transplant probably has more risk of complications as well. Those cells can also recognize your body as being foreign and try to fight them off because they don’t originate from you. And there’s also just a risk of other death from that procedure. So, all those have to be taken with a bit of caution. And for the Allo transplant, it’s generally only recommended if you have that, a sibling donor. Because there’s much less risk of complications than versus you get an unrelated donor.

What Is the Patient Role in Follicular Lymphoma Treatment Decisions?

What Is the Patient Role in Follicular Lymphoma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips discusses the importance of patient self-advocacy in the treatment of follicular lymphoma. Dr. Phillips reviews shared decision-making, encourages patients to seek second opinions, and to feel confident in their treatment plan. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

Emerging Follicular Lymphoma Treatment Approaches

Emerging Follicular Lymphoma Treatment Approaches

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects

Why Follicular Lymphoma Patients Should Speak Up About Symptoms and Side Effects


Transcript:

Katherine:                  

Yeah, right. What do you feel is the patient’s role in treatment decisions?

Dr. Phillips:                 

So, I know historically a lot of times, you come into an office, and we tell you what you’re going to get and what you’re not going to get. Patients nowadays are I would say a lot more savvy as far as what drugs are out there. And there are a lot more sort of conversational groups on social media between patients who’ve had treatment before and newly diagnosed patients. So, patients come in with a lot more information than they had historically had before. So, in that point, I think it’s more of an open dialogue about what options we have, what options are best for you, and what our treatment goals are at that point.

But all it means, given that we don’t yet have a standard of care, it leaves it open for discussion about sort of which route we choose to try to get your cancer under control.

Katherine:                  

Mm-hmm. Dr. Phillips, if a patient isn’t feeling confident with their treatment plan or their care, do you think they should consider a second opinion or a consult with a specialist?

Dr. Phillips:                 

I think a second opinion is probably best for all patients. It’s always probably good to get a different opinion about how the disease will be treated. So, I do encourage all my patients, even here, to get a second opinion. Some take me up on it, others won’t. But the option is always there to get a second opinion, just to see if anybody would do things any differently.

And I would say for the most part, most people would tend to treat the same way. Very seldom do we have differences in what our treatment recommendations would be. I think the biggest difference in some situations, 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.

Katherine:                  

Mm-hmm. What would you say to a patient who may be nervous about offending their current doctor by getting a second opinion?

Dr. Phillips:                 

You shouldn’t be. If your doctor is offended because you’re getting a second opinion, that’s probably not the doctor for you. Yeah, I think that at this point, any physician that’s confident in their decision they’re giving you should not be offended if you go seek reassurance from somebody else.

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips provides insight on how to personalize follicular lymphoma treatment decisions. Dr. Phillips discusses the efficacy of some treatment combinations and which factors impact the decision to begin treatment.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?

What Treatment Options Are Available for Relapsed Follicular Lymphoma?


Transcript:

Katherine:                  

What is considered when choosing a treatment? Are there test results that can impact the options?

Dr. Phillips:                 

So, there are. So, for the most part we’ll take a couple of things into consideration. So, there is no standard of care for follicular lymphomas. So, there are a couple different options that can be utilized in the upfront setting for the untreated patient. So, comorbidities play a part in what sort of treatment we choose. Patient’s age and fitness will play a part. If there’s any heart disease, that will play a part in the situation as well. And also, as I said, stage will play a part in sort of what our treatment goals are.

So, if our treatment goal for a really unfit patient who we don’t think can tolerate chemotherapy, it’s just symptom control. And they don’t have a lot of disease, we can sometimes treat them with just a monoclonal antibody we call Rituximab as a single agent.

If the patient has a lot of disease, and they are a fit patient, we will tend to combine Rituximab with several different chemotherapy regimens. Because Rituximab plus chemotherapy works better than chemotherapy and also Rituximab alone, especially depending on the amount of the disease that we’re trying to treat. And again, as I mentioned before, if it’s a localized patient there is known to be radiation plus or minus Rituximab in that situation.

But because of some of the side effects of the drugs we use, and obviously now we’re in a pandemic, a lot of those will take sort of some of the consideration of what we use. Some of the drugs that we use are either more sort of immunosuppressants than others, and obviously being in a pandemic, we have to take that into consideration because we’re not treating to cure. Some of the drugs can cause heart damage, some of the drugs can damage nerves, some of the drugs include steroids, which might be prohibited with some patients. So, all that sometimes has to be taken into consideration when we choose our regimen.

Katherine:                  

Yeah. It sounds like there are a lot of factors coming into play here.

Dr. Phillips:                 

Yeah, I mean normally, without a pandemic there’s a lot of factors, and the pandemic just makes things a little bit harder. Just because, again, our patients are already at risk based with some of the treatments we choose.

Katherine:                  

Yeah. Yeah. It’s pretty challenging right now. Does treatment typically start right away?

Dr. Phillips:                 

So, that really depends on a stage and also whether we meet certain sort of criteria to treat. So, we don’t have to treat right away. So, if a patient has a disease, and the disease is not in an area where we think it’s curative, for the most part we can enter into what we call a watch and wait. Meaning we will observe a patient very closely and defer treatment until the patient develops symptoms or other indications that warrant treatment.

We do know that there is no impact on longevity by sort of partaking in this approach. So, you won’t live any longer or you won’t live any shorter if we watch and wait versus initiating therapy right away. It just saves you from having some of the toxicities from treatment without any real major benefits.

So, remember the goal for most patients with follicular lymphoma is to alleviate symptoms or problems. If you don’t have a symptom or a problem, me giving you treatment is not going to make you feel any better. Actually, it would probably make you feel a little bit worse. To get you back to where you were when you started.

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips reviews the main treatment goals for follicular lymphoma. Dr. Phillips provides insight on treatment decisions based on the patient’s staging and symptoms. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

 
Follicular Lymphoma: What Treatment Options Are Available?

Follicular Lymphoma: What Treatment Options Are Available?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Is the Patient’s Role in Follicular Lymphoma Decisions?


Transcript:

Katherine:                  

How about we begin with treatment goals? What does this mean exactly and what are the goals of treatment for follicular lymphoma?

Dr. Phillips:                 

So, for the vast majority of patients, follicular lymphoma unfortunately to date is not curable. So, for those patients the goal of treatment when we initiate treatment is to alleviate any symptoms that may be caused by the lymphoma.

So, the patient has fevers, they have night sweats, or there’s some sort of organ damage from the cancer, our goal of treatment is to reverse that and put the cancer into what we call a remission. Remission basically means that from the test that we have currently, we cannot find any evidence of the cancer. That does not mean that you’re cured from the cancer. Patients with earlier stages – so, if you have a patient with stage one or a localized stage two, we approach that with a little bit of a different treatment mindset.

So, if we can catch it early enough, which is very hard given because of the cancer. So, these are really incidentally found, and in some cases, by luck. We can potentially cure follicular lymphoma in these patients. But that’s more of a curative intent with radiation and not systemic therapy. With the advent of PET scans, which have made it a little bit easier to find all the hidden areas of where the follicular lymphoma may hide out, concurrently with a bone marrow biopsy, if a patient is truly stage one, we will initiate therapy with a curative intent.

Whereas, again, with the other patients, our goal is just to control the symptoms and put you into remission.

What Are the Stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

How does follicular lymphoma progress? Expert Dr. Tycel Phillips discusses the disease’s stages and the impact on treatment options.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Is Follicular Lymphoma?

What Is Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?


Transcript:

Katherine:                  

You’ve touched upon this briefly, but what are the stages of follicular lymphoma? How does it progress?

Dr. Phillips:                 

So, when we talk about follicular lymphoma, so, in stages there are four stages. Stage one, which means it’s localized in one general area. Or potentially into one organ. Stage two means that it is on one side of the diaphragm. So, we use your diaphragm as sort of a dividing point. Sort of like a Mason-Dixon line of the body. So, if it’s all on one side, it’s a stage two. If you have disease both above and below the diaphragm, you’d be considered to be stage three. Stage four indicates that you either have an organ involved in a nonadjacent lymph node.

So, let’s just say there’s a spot in your liver and you have a lymph node in your neck, or if your bone marrow is involved. For the most part, most patients with follicular lymphoma, because again, when develops, it doesn’t really develop with symptoms and typically is in there for quite a bit of time. Most patients will have what we consider to be advanced stage of this disease, meaning it’s stage three or four. Because the cancer has quite a bit of time to grow and move around before we find it.

It also comes in a set of grades. So, stage and grades are different. Stage is location, grade is what the pathologist sort of looks at when he looks under a microscope – how angry or big the cells look. So, we typically divide it into grades one and two; it’s very hard to separate one and two, so it’s generally grouped together. Which means there are mostly small round cells and very few big cells. And then we have grade 3A and grade 3B. And grade 3A means that when they look at it under the microscope, they see a fair number of larger cells which means that’s probably a bit more aggressive than the grade one to two.

And grade 3B is sort of separated into a category of its own. And we tend to treat grade 3B as a more aggressive lymphoma. we treat that very closely, like we treat the diffuse large B-cell lymphomas. So, grade 3B is in a category of its own, and then grades one to two and grade three are sort of clumped together.

What Is Follicular Lymphoma?

What Is Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips gives his expert definition of follicular lymphoma and explains why this disease is often found incidentally. 

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What are the stages of Follicular Lymphoma?

What Are the Stages of Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?


Transcript:

Katherine:                  

What exactly is follicular lymphoma?

Dr. Phillips:                 

So, follicular lymphoma is a malignant growth or tumor in some situations, depending on how you want to describe it, of lymphocytes. Lymphocytes are normal cells that we have in our body and are a very important part of our immune system. For a very generic sort of description, lymphocytes come in what we call B and T-cells. B-cells, as I mentioned, are the cells that help make antibodies and it’s how we fight viruses and other diseases. These antibodies help our immune system recognize and hopefully clear these pathogens quicker.

And then we also have T-cells, which I like to refer to as like jailers, who will survey and sort of try to eliminate any abnormal cells. Lymphoma can come in a B-cell lymphoma or a T-cell lymphoma. For western Europe and the U.S., B-cell lymphomas account for the vast majority of cases of lymphoma; about 85%. When we look at B-cell lymphomas, we have Hodgkin’s Lymphomas, which are a separate category, and non-Hodgkin’s lymphomas.

And follicular lymphoma is the most common indolent, or what we consider slow growing, of non-Hodgkin’s lymphomas. So, when we talk about indolent as slow growing, these are lymphomas that are more than likely to be found incidentally by CAT scans. Or if you’re going for some other procedure, they’ll notice that you have enlarged lymph nodes and a biopsy will lead to a diagnosis of follicular lymphoma. In most cases, the cancer has probably been there for several years, at least months, before it’s been found. And in most cases, most patients have been living happily unbeknownst to them together with this cancer.

And so, follicular lymphoma being in that way is something that, again, we consider to be slow growing because, again, the more aggressive lymphomas tend to come with symptoms. So, these can come on more insidiously and are typically found incidentally.

Is the COVID Vaccine Safe and Effective for Follicular Lymphoma Patients?

Is the COVID Vaccine Safe and Effective for Follicular Lymphoma Patients? from Patient Empowerment Network on Vimeo.

Dr. Tycel Phillips discusses the efficacy and safety of the COVID vaccine for follicular lymphoma patients. Dr. Phillips reviews the effects it may have on patients and provides his expert advice.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center. Learn more about Dr. Phillips, here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Related Programs:

What Are the Treatment Goals for Follicular Lymphoma?

What Are the Treatment Goals for Follicular Lymphoma?

What Factors Are Considered When Choosing a Follicular Lymphoma Treatment?

What Is the Patient’s Role in Follicular Lymphoma Decisions?

What Is the Patient’s Role in Follicular Lymphoma Decisions?


Transcript:

Katherine:                  

Is the COVID vaccine safe and effective for follicular lymphoma patients?

Dr. Phillips:                 

So, the vaccine is safe. The effectiveness of the vaccine does in some part depend on whether the patients are untreated or they’re currently on treatment. Some of the treatments that we use to combat follicular lymphoma and other lymphomas unfortunately targets one of the key cells in the response to the vaccine. So, as follicular lymphoma is a cancer of the malignant B-cell, one of our treatments are directed, you know, obviously killing off malignant B-cells. And unfortunately, we do take some innocent bystanders. So, your normal B-cells will be impacted, which does sometimes impact your abilities to make antibodies.

But we do know from research that the vaccines will also trigger a T-cell response, which most of our treatments will not impact. So, well, we do recommend for our patients to be vaccinated. Because, again, it is safe. And, again, it is effective even if it’s not as effective as it would be if you weren’t on treatment.

Katherine:                  

Mm-hmm. Better to be safe than sorry.

Dr. Phillips:                 

Yes.

Advanced Non-Melanoma Skin Cancer Treatment Decisions: What’s Right for You?

Advanced Non-Melanoma Skin Cancer Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When considering an advanced non-melanoma skin cancer treatment approach, what helps determine the best treatment for YOU? Dr. Vernon Sondak discusses key treatment decision factors, emerging research, and shares tips for collaborating with your healthcare team.

Dr. Vernon Sondak is the Chair of the Department of Cutaneous Oncology at H. Lee Moffitt Cancer Center and Research Institute. Learn more about Dr. Sondak, here.
 

Katherine:                  

Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. In this program we’re going to help you learn more about advanced non-melanoma skin cancer, what it is, and how it’s treated. And we’ll share tools to help you work with your health care team, to access the best care.

Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during this webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today, in order to help us plan future webinars.

And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your health care team about what might be best for you.

Joining us today is Dr. Vernon Sondak. Dr. Sondak, welcome. Would you please introduce yourself?

Dr. Sondak:                

Thank you and I’m glad to be here. I’m Vern Sondak. I’m the chair of the Department of Cutaneous Oncology at Moffitt Cancer Center in Tampa, Florida. Cutaneous oncology is, of course, the diagnosis and treatment of all forms of cancer that start on the skin. I am a cancer surgeon by training, but pretty much do only skin cancers, melanoma, and all the other types of skin cancer that we’re going to be talking about today.

Katherine:                  

Excellent. Thank you for taking the time out of your busy schedule to join us. Before we learn more about advanced non-melanoma skin cancer, let’s start with the question that’s on the minds of many patients. Is the COVID vaccine safe and effective for advanced non-melanoma skin cancer patients?

Dr. Sondak:                

I’ve spent my entire career studying the human immune system and vaccines for cancer. The COVID vaccine is the safest, most effective vaccine we have ever seen. It is like the difference between the Wright brothers airplane and the Apollo spaceships in terms of sophistication.

It is a vaccine that has gotten politicized and has gotten tangled up in all kinds of stuff. But again, it is the safest, most effective vaccine we’ve ever seen. I highly recommend it for all of our patients. I believe that all of our patients with cancer, and their family members, and their children of appropriate age should be vaccinated and boosted.

Even if you do that, as I have done, I go vaccinated, I got boosted, and I got COVID. It was milder than the usual cold I get every year before COVID. If I hadn’t been tested, I wouldn’t have even known I had it. I only get tested to avoid spreading it to family members and especially to vulnerable patients. If your immune system is weakened and it’s even more important to be vaccinated.

So, the only advice I give to my patients about the vaccine, and the vaccination specifically, is think about which arm to have it in. If you’ve got an active cancer, say in the left arm, have it in the right arm. Not because it will hurt the cancer, but because in the early days after the vaccine, you may get a little bit of swelling of the lymph nodes. We don’t want your doctor or anybody doing a CAT scan, or ultrasound, or mammogram, or any other test to accidentally think that those enlarged lymph nodes are from the cancer.

If you had the vaccine recently and are getting any type of diagnostic procedure, like a CAT scan mammogram or ultrasound of those lymph nodes, tell the team that you had a recent COVID vaccine.

Katherine:                  

That’s excellent advice. Thank you. Good to know. Let’s start with the basics Dr. Sondak. What exactly is non-melanoma skin cancer?

Dr. Sondak:                

Well, it’s a great question. Sometimes we wish there was a better term, because it obviously is defining this by what it’s not, not by what it is.

Katherine:                  

Right.

Dr. Sondak:                

Melanoma is the most prevalent of the really severe skin cancers. By severe, I mean the ones with the highest chance of spreading and dying. Each year in the United States, there are close to 10,000 deaths from melanoma every year, and about 100,000 cases of invasive melanoma.

But the other forms of skin cancer, and the most common two forms of skin cancer, are basal cell and squamous cell cancers. These two cancers alone, they are about two to three million cases a year, compared to 100,000 melanoma cases.

Katherine:                  

Wow.

Dr. Sondak:                

But probably causing fewer deaths than those 100,000 melanomas. So, there are many, many more of the skin cancers that aren’t melanoma, then there are of the skin cancers that are melanoma.

In fact, there are probably more skin cancers – just if we took basal and squamous cell cancer – there are probably more of those diagnosed every year in the United States than all other forms of cancer put together.

Katherine:                  

Wow. Wow.

Dr. Sondak:                

Now in general, these skin cancers – besides melanoma – are at a low risk of spreading, and metastasizing, and killing the person if their immune system is normal. So, they have almost gotten passed off as, “Oh, it’s just the skin cancer. It’s nothing to worry about.” But when they reach a certain size, when they get to a point where we call them advanced, then now the stakes are higher. It’s not millions of advanced cases, but it’s many tens of thousands of advanced cases in the United States. Some of them do spread and some of them can be life threatening, or even lethal.

Katherine:                  

And we are going to focus today on advanced disease. So, what makes this type of cancer considered advanced?

Dr. Sondak:                

So, this also is somewhat – I won’t say controversial. I’ll just say it’s not uniformly agreed on by everybody. Not everyone means the exact same thing or has the exact same definition in their mind when they say advanced.

It’s a little different than the stage. The staging of skin cancer is mostly based on the size. So, a small skin cancer is almost never an advanced skin cancer. By small I mean less than 2 centimeters, sometimes. Depending where. Two centimeters is just under an inch.

But 2 centimeters in the middle of your face or on the tip of your nose. That’s already a pretty big problem. So, somebody might say, “Well, that’s kind of advanced.” Yes it is. But that’s not what we’re really talking about here. We’re talking about larger tumors. Tumors that have spread deeply into the tissues, or tumors that have spread and gotten to the next stages. Stage III, meaning in the lymph nodes. Or stage IV, meaning it’s spread beyond the lymph nodes, to the lungs and beyond.  

In terms of stages, in terms of stage III and stage IV, basal and squamous cell cancers, we are talking about much fewer than 2 percent of all those skin cancers. For basal cell, way fewer. For squamous cell, slightly fewer than 2 percent of all cases ever getting to a higher stage, like stage III and stage IV.

Sometimes they can be very advanced without ever spreading to the lymph nodes or beyond because they invade down into the bone. Could be on the top your scalp and invade down into your skull bone. Can be on the cheek, and invade, and follow the track along the nerves of the face. A lot of ways that the skin cancer can become advanced without spreading. But cancers that have spread are automatically considered advanced.

Katherine:                  

Right. That helps us understand the disease and how it progresses.           

There are so many factors that come into play when making a treatment decision, including a patient’s age and overall health. So, let’s walk through the considerations when choosing therapy for advanced disease. What are the treatment goals? What does that mean and what are the goals?

Dr. Sondak:                

It’s actually really important and somewhat underrated to think about, “What’s the goal of the treatment?” I think even doctors sometimes, certainly medical students and trainees, it’s something they have to learn a lot about. Because it’s easy to memorize all the names of all the drugs and all the muscles in the body. But thinking about, “What are we really trying to accomplish here?”

The first thing we would like to accomplish, when we can, is cure the cancer. Most of the advanced skin cancers we’re talking about are still curable. We can’t say all, but most. Even in the high stages they are still potentially curable with treatment.

So, of course, if we can cure someone, we might be more aggressive with our treatment plan. More intensive with our treatment than if we’re not intending to cure them. Why wouldn’t we want to cure them? Why would we have a different intention? We’d always want to, but there are times when we say, “Gee, the standard treatments haven’t worked. Now we have to think about what other goals? We can’t cure you anymore.”

It’s pretty rare with skin cancer. But it happens. It happens with melanoma, and it happens with basal, and squamous cell cancers, but rarely.

We can’t cure you. We can help you feel better because the symptoms that this large skin cancer – this advanced skin cancer – is causing. Whether they might be bleeding, or pain, or pressure on a nerve, or whatever it might be. If we can relieve that, that’s palliation. That’s relieving symptoms. There are times we say, “We want to prevent that symptom from happening in the first place. If we don’t remove this, this is going to start bleeding, or it’s going to press on the nerves.”

So, even if we can’t cure you, we might want to treat one or more spots to prevent symptoms from occurring. Only in the most extreme, end of the line, kind of situations would we say now our goal is just comfort. We can no longer do anything to really alter the disease. When and how we make those decisions, obviously, they are challenging. But if you don’t start with that point, then you can’t get to the right treatment decision.

If you’ve got a patient who’s not curable, you want to do the least treatment to make them feel better or prevent them from feeling bad. Whereas if you’ve got a patient who is curable, you may be willing to justify much more aggressive treatment, if that’s what’s needed to cure them. 

Katherine:                  

How do patient-specific factors, like lifestyle and pre-existing conditions, impact treatment choices?

Dr. Sondak:                

It really depends, but in skin cancer it can affect them a lot.

Number one: Lifestyle. Well, how did we get skin cancers in the first place? Whether they’re melanoma, basal, squamous? Usually, the one common denominator is ultraviolet light. Got it from being out in the sun or occasionally from being in a tanning bed. Something like that. Melanomas, and to a small extent basal cell cancers, tend to be associated with brief intermittent heavy exposure, meaning sunburns. Squamous cell cancer tends to be associated with chronic cumulative years of sun exposure. I was out in the sun all my life, I fished all the time, I was a lifeguard, what have you. That’s generalization.

A lot of overlap. But the common denominator, the common theme, is ultraviolet exposure. One thing about the sun, it doesn’t just shine on one spot all the time. It shines on lots of places. So, you may have a skin cancer here, but that doesn’t mean you didn’t get sun exposure there, or here, or anywhere else.

So, lifestyle factors. One: We can’t undo the ultraviolet exposure you already had. But we can prevent it from accumulating further. So, once a person is diagnosed with skin cancer, they really need to think about protecting themselves from the sun, avoiding sun exposure, and covering their skin, and protecting their skin when they’re in the sun. Ideally, they think about it before they got skin cancer. So, they don’t get skin cancer. Or if they get it, they get a mild, minimal, non-advanced, and easily treatable case.

But we want to make sure that once a person has skin cancer, that they recognize that their lifestyle needs to change. Cigarette smoking, unbeknownst to a lot of people, is also associated to some degree with skin cancers and a lot of other big and bad medical problems. So, we would love to alter people’s lifestyle as far as smoking is concerned. Those are the couple of key lifestyle factors that we always think about.

I think the other area that is so important in deciding about treatment is the overall health of the patient, other medical conditions that they might have, and then lastly, what the patient’s own specific concerns and considerations are.

Katherine:                  

Yeah. Let’s turn now to the treatment options for advanced disease. What approaches are currently available to treat advanced non-melanoma skin cancer?

Dr. Sondak:                

First and foremost, we always think about, can this thing be entirely removed? Can we get the cancer out and cure the patient once and for all with an operation?

Most skin cancers have not yet spread to the lymph nodes or beyond, even when they’re advanced. So, it follows that if we can remove every last cancer cell from that site, we can cure that patient. That is obviously a worthwhile goal.

But these skin cancers occur in places where a big enough surgery to remove all the cancer can be a pretty deforming surgery. It’s why plastic surgeons get involved a lot. But it’s also why we try combinations of therapy to see if we can get by with less surgery, less radical surgery. Perhaps by adding radiation or adding drug treatments to shrink the cancer.

So, surgery first. Can we do it? Can we just fix this once and for all with surgery and get it done? Whether it’s Mohs, for more advanced cases, usually a general anesthesia type surgery. Often with a skin graft or other kind of plastic surgery reconstruction. Could we just get it all out and have the pathologist tell us, “This is done. This is taken care of”? It’s not a guarantee. There’s no guarantees in this business. Only in the muffler business.

But the odds are good if the pathologist tells us the margins are completely negative. If the pathologist tells us the margins are close here, or positive there, and we don’t think removal of additional tissue is wise, then we may call in the radiation oncologist and say, “Let’s give radiation.” Kill that area where there was a positive margin and give us a margin of safety around the surgery.

In the minority of cases, we say, “This is too big to even tackle with surgery – at least at first – or too widespread. So, we’re going to use drug treatments. If it shrinks, we may use radiation for surgery later. But first, drugs and let’s see what happens after that.”

So, today we have really three main categories of drug therapy. In the old days we had – and it wasn’t that long ago – we had really one category. I’d say that’s only been in the last – not even – 10 years that we’ve had multiple options. But let’s go back 10 years.

Chemotherapy. Standard chemotherapy that people think about with cancer. Hair falls out, nausea as a prominent side effect, suppressing of your immune system, suppressing of your blood counts. That form of chemotherapy was really the only drug therapy we had for advanced melanoma. I mean, advanced non-melanoma skin cancer. Advanced melanoma too could years or more ago.

Now, through progress with melanoma, we have drugs that work in the other kinds of skin cancer. Immunotherapy took the world by storm. It worked so well for melanoma that we tried it in squamous, and merkel cell, and even basal cell cancers, and also saw great results. Now immune therapy is approved in all three of those types of non-melanoma skin cancer.

But there are problems with immune therapy if you have an altered immune system. Especially if you have a kidney transplant, or liver transplant, heart transplant, and we boost your immune system, we run a serious risk of rejection. It isn’t a guarantee, and it can sometimes be managed with additional medications. But it’s something that we have to be very, very, very cautious about, is using immune therapy in someone with a transplant.

So, targeted therapy works when we have a genetic abnormality in a cancer, that we know is only in the cancer, and that we have a drug that can block. For melanoma, if it has a BRAF mutation, we have targeted therapy drugs that target the BRAF mutation.

But non-melanoma skin cancers don’t have BRAF mutations. Squamous cell cancers don’t have mutations that today we can target. Only basal cell cancer, along with melanoma, has a mutation that we can target.

But unlike melanoma – where only some melanomas have the gene mutation in BRAF – basal cells, all the cancers have a mutation in the hedgehog pathway. You can’t pretty much have a basal cell cancer without having a mutation in the hedgehog pathway. Fortunately, we have pills that inhibit that pathway that we call hedgehog inhibitors. Vismodegib, sonidegib, and these drugs are very effective at shrinking even gigantic basal cell cancers.

But the problem with targeted therapy in general, compared to immune therapy, is that the responses don’t tend to last as long. The tumor will shrink very rapidly. But some of those cancer cells figure out a way to mutate further and avoid the drugs that we were using to treat them, and eventually grow back.

Dr. Sondak:                

Let me just correct one thing I said about targeted therapy, so I don’t leave the wrong impression. I said there’s not really mutations in squamous cell cancer that can be targeted. There is one called the EGF receptor, or EGFR, that we sometimes target with a drug called cetuximab.

It’s not used as much now with immunotherapy. But it turns out there is some targeted therapy, even for squamous cell cancers. But for basal cell, is where the hedgehog inhibitors are used much more effectively than targeted therapy in most other forms of skin cancer.

Katherine:                  

Dr. Sondak, do you think a patient should consider a second opinion or consulting a specialist? If so, what would you say to them, to make them feel comfortable to do that?

Dr. Sondak:                

So, I would remind everyone – as we said earlier – advanced skin cancer is not something you can pass off. “Oh, it’s just skin cancer. Everybody gets skin cancer. It’s just minor. Just put a band aid on it.” I’ve seen people who’ve neglected these cancers for a long time, thinking they weren’t serious, or thinking that the treatments were going to be too awful, too disfiguring, or too toxic. That’s just not the case anymore.

Everyone with advanced skin cancers should have cutting edge appropriate treatment. Cutting edge doesn’t always mean brand new. It might mean the same surgery we’ve been doing for many years. Just done properly and appropriately for that patient.

So, this is a kind of cancer that usually should be treated by very experienced teams. Especially when drug treatment is needed, often when radiation is needed, and certainly when major surgery is needed. Not just the use of the drugs, but the sequence. Which drug first? Which drug second? When is surgery appropriate? When do we do the radiation?

These are sophisticated decisions, and every patient is different. So, we strongly encourage people to go to a center that has a whole panel of different specialists. And they work and talk to each other. They work with each other, work together, talk to each other, and come up with a plan for each patient. If you just go to one doctor, sometimes – an old saying – when all you have is a hammer, everything looks like a nail. There are times when somebody says, “Well, I can do radiation.” Surgeon says, “I can do surgery.” Oncologist says, “I can do chemo, or targeted therapy, or immunotherapy.”

We want them all together, saying “Yeah, but what should we do for this patient?” That’s the goal that we’re striving for. That’s when you’re going to be the most likely to get the most successful outcome.

Katherine:                  

Dr. Sondak, what would you like to leave patients with? Are you hopeful?

Dr. Sondak:                

We have seen the most dramatic progress in the treatment of these forms of cancer of the skin – melanoma, merkel cell cancer. basal and squamous cell cancers – in my lifetime. Progress I never ever thought I would see. We are not curing everybody, but we are curing a lot more people than we used to.

Yet I still see things about these forms of cancer on the internet that say, “Oh, this is really aggressive. This needs to be treated right away. Don’t wait. Don’t make me go get a second opinion. Have somebody deal with it.”

No. Time out. First thing, it’s better to do it right than to do it right away. Second thing, you don’t get a second chance to make a first impression, and if you go down the wrong treatment path, sometimes you can’t undo that. There is always time to stop and ask, “Am I doing the right thing? Is there somebody who really specializes in this that I should be seeing?”

But the most important advice at all, of course, is you’ve got to get the diagnosis made in the first place. So, that means you have to be willing to go to the doctor, to the dermatologist, to say, “Hey, this doesn’t seem right. It’s just not healing. It just keeps getting worse. What’s going on?”, and then have to be willing to follow up and go through treatments.

If you do, we are extremely optimistic. We are seeing progress, responses, cures that we never thought possible. So, there’s a lot of reason to be optimistic. It’s not always easy. There are plenty of side effects of all the treatments that we talked about. Including surgery, radiation, and all the drugs. But it’s not like it was even 10 years ago. Huge progress for people at any age. So, really, we really are optimistic.

Katherine:                  

Thank you so much for joining us today. It’s been a pleasure talking to you.

Dr. Sondak:                

Thank you for having me. Good luck with all your efforts.

Katherine:                  

Thank you and thank you to all of our partners. If you would like to watch this program again, there will be a replay available soon. You’ll receive an email when it’s ready. Don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs.

To learn more about advanced non-melanoma skin cancer, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.

Follicular Lymphoma Treatment Decisions: What’s Right for You?

Follicular Lymphoma Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When considering therapy for follicular lymphoma, what determines the best treatment for YOU? Dr. Tycel Phillips reviews key factors for making treatment decisions, tips for partnering with your healthcare team, and shares an update on emerging treatment and research.

Dr. Tycel Jovelle Phillips is a Medical Oncologist in the Hematology Clinic at The University of Michigan Rogel Cancer Center.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

Download Guide

Related Programs:

Follicular Lymphoma Care Partner Follow-Up Visit Planner 

Follicular Lymphoma Caregiver First Office Visit Planner

Follicular Lymphoma Care Partner First Office Visit Planner

Follicular Lymphoma Patient Follow-Up Visit Planner 


Transcript:

Katherine:             

Hello and welcome. I’m Katherine Banwell, your host for today’s webinar. In this program, we’re going to learn more about follicular lymphoma. What it is, how it’s treated, and we’ll share tools to help you work with your healthcare team to access the best care. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials.

If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Joining me today is Dr. Tycel Phillips. Welcome, Dr. Phillips. Would you please introduce yourself?

Dr. Phillips:                 

Hi, I’m Dr. Tycel Phillips. I’m an associate professor at the University of Michigan. I look forward to talking today.

Katherine:                  

Good. Thank you so much for taking the time out of your schedule. Before we learn about follicular lymphoma, let’s start with a question we’ve received that’s on the minds of many patients. Is the COVID vaccine safe and effective for follicular lymphoma patients?

Dr. Phillips:                 

So, the vaccine is safe. The effectiveness of the vaccine does in some part depend on whether the patients are untreated or they’re currently on treatment. Some of the treatments that we use to combat follicular lymphoma and other lymphomas unfortunately targets one of the key cells in the response to the vaccine. So, as follicular lymphoma is a cancer of the malignant B-cell, one of our treatments are directed, you know, obviously killing off malignant B-cells. And unfortunately, we do take some innocent bystanders. So, your normal B-cells will be impacted, which does sometimes impact your abilities to make antibodies.

But we do know from research that the vaccines will also trigger a T-cell response, which most of our treatments will not impact. So, well, we do recommend for our patients to be vaccinated. Because, again, it is safe. And, again, it is effective even if it’s not as effective as it would be if you weren’t on treatment.

Katherine:                  

Mm-hmm. Better to be safe than sorry.

Dr. Phillips:                 

Yes.

Katherine:                  

Let’s start at the very beginning. What exactly is follicular lymphoma?

Dr. Phillips:                 

So, follicular lymphoma is a malignant growth or tumor in some situations, depending on how you want to describe it, of lymphocytes. Lymphocytes are normal cells that we have in our body and are a very important part of our immune system. For a very generic sort of description, lymphocytes come in what we call B and T cells. B cells, as I mentioned, are the cells that help make antibodies and it’s how we fight viruses and other diseases. These antibodies help our immune system recognize and hopefully clear these pathogens quicker.

And then we also have T cells, which I like to refer to as like jailers, who will survey and sort of try to eliminate any abnormal cells. Lymphoma can come in a B-cell lymphoma or a T-cell lymphoma. For western Europe and the U.S., B-cell lymphomas account for the vast majority of cases of lymphoma; about 85 percent. When we look at B-cell lymphomas, we have Hodgkin’s Lymphomas, which are a separate category, and non-Hodgkin’s lymphomas.

And follicular lymphoma is the most common indolent, or what we consider slow growing, of non-Hodgkin’s lymphomas. So, when we talk about indolent as slow growing, these are lymphomas that are more than likely to be found incidentally by CAT scans. Or if you’re going for some other procedure, they’ll notice that you have enlarged lymph nodes and a biopsy will lead to a diagnosis of follicular lymphoma. In most cases, the cancer has probably been there for several years, at least months, before it’s been found. And in most cases, most patients have been living happily unbeknownst to them together with this cancer.

And so, follicular lymphoma being in that way is something that, again, we consider to be slow growing because, again, the more aggressive lymphomas tend to come with symptoms. So, these can come on more insidiously and are typically found incidentally.

Katherine:                  

You’ve touched upon this briefly, but what are the stages of follicular lymphoma? How does it progress?

Dr. Phillips:                 

So, when we talk about follicular lymphoma, so, in stages there are four stages. Stage I, which means it’s localized in one general area. Or potentially into one organ. Stage II means that it is on one side of the diaphragm. So, we use your diaphragm as sort of a dividing point. Sort of like a Mason-Dixon line of the body. So, if it’s all on one side, it’s a stage II. If you have disease both above and below the diaphragm, you’d be considered to be stage III. Stage IV indicates that you either have an organ involved in a nonadjacent lymph node.

So, let’s just say there’s a spot in your liver and you have a lymph node in your neck, or if your bone marrow is involved. For the most part, most patients with follicular lymphoma, because again, when develops, it doesn’t really develop with symptoms and typically is in there for quite a bit of time. Most patients will have what we consider to be advanced stage of this disease, meaning it’s stage III or IV. Because the cancer has quite a bit of time to grow and move around before we find it.

It also comes in a set of grades. So, stage and grades are different. Stage is location, grade is what the pathologist sort of looks at when he looks under a microscope – how angry or big the cells look. So, we typically divide it into grades 1 and 2; it’s very hard to separate one and two, so it’s generally grouped together. Which means there are mostly small round cells and very few big cells. And then we have grade 3A and grade 3B. And grade 3A means that when they look at it under the microscope, they see a fair number of larger cells which means that’s probably a bit more aggressive than the grade 1 to 2.

And grade 3B is sort of separated into a category of its own. And we tend to treat grade 3B as a more aggressive lymphoma. we treat that very closely, like we treat the diffuse large B-cell lymphomas. So, grade 3B is in a category of its own, and then grades 1 to 2 and grade 3 are sort of clumped together.

Katherine:                  

Okay. That’s very helpful, thank you. Now that we know more about follicular lymphoma and how it’s staged, let’s move on to treatment approaches. Many factors come into play, right, when making a treatment decision. Including a patient’s age and overall health. So, let’s walk through these considerations. How about we begin with treatment goals? What does this mean exactly and what are the goals of treatment for follicular lymphoma?

Dr. Phillips:                 

So, for the vast majority of patients, follicular lymphoma unfortunately to date is not curable. So, for those patients the goal of treatment when we initiate treatment is to alleviate any symptoms that may be caused by the lymphoma.

So, the patient has fevers, they have night sweats, or there’s some sort of organ damage from the cancer, our goal of treatment is to reverse that and put the cancer into what we call a remission. Remission basically means that from the test that we have currently, we cannot find any evidence of the cancer. That does not mean that you’re cured from the cancer. Patients with earlier stages – so, if you have a patient with stage I or a localized stage II, we approach that with a little bit of a different treatment mindset.

So, if we can catch it early enough, which is very hard given because of the cancer. So, these are really incidentally found, and in some cases, by luck. We can potentially cure follicular lymphoma in these patients. But that’s more of a curative intent with radiation and not systemic therapy. With the advent of PET scans, which have made it a little bit easier to find all the hidden areas of where the follicular lymphoma may hide out, concurrently with a bone marrow biopsy, if a patient is truly stage I, we will initiate therapy with a curative intent.

Whereas, again, with the other patients, our goal is just to control the symptoms and put you into remission.

Katherine:                  

What is considered when choosing a treatment? Are there test results that can impact the options?

Dr. Phillips:                 

So, there are. So, for the most part we’ll take a couple of things into consideration. So, there is no standard of care for follicular lymphomas. So, there are a couple different options that can be utilized in the upfront setting for the untreated patient. So, comorbidities play a part in what sort of treatment we choose. Patient’s age and fitness will play a part. If there’s any heart disease, that will play a part in the situation as well. And also, as I said, stage will play a part in sort of what our treatment goals are.

So, if our treatment goal for a really unfit patient who we don’t think can tolerate chemotherapy, it’s just symptom control. And they don’t have a lot of disease, we can sometimes treat them with just a monoclonal antibody we call rituximab (Rituxan) as a single agent.

If the patient has a lot of disease, and they are a fit patient, we will tend to combine rituximab with several different chemotherapy regimens. Because rituximab plus chemotherapy works better than chemotherapy and also rituximab alone, especially depending on the amount of the disease that we’re trying to treat. And again, as I mentioned before, if it’s a localized patient there is known to be radiation plus or minus rituximab in that situation.

But because of some of the side effects of the drugs we use, and obviously now we’re in a pandemic, a lot of those will take sort of some of the consideration of what we use. Some of the drugs that we use are either more sort of immunosuppressants than others, and obviously being in a pandemic, we have to take that into consideration because we’re not treating to cure. Some of the drugs can cause heart damage, some of the drugs can damage nerves, some of the drugs include steroids, which might be prohibited with some patients. So, all that sometimes has to be taken into consideration when we choose our regimen.

Katherine:                  

Yeah. It sounds like there are a lot of factors coming into play here.

Dr. Phillips:                 

Yeah, I mean normally, without a pandemic there’s a lot of factors, and the pandemic just makes things a little bit harder. Just because, again, our patients are already at risk based with some of the treatments we choose.

Katherine:                  

Yeah. Yeah. It’s pretty challenging right now. Does treatment typically start right away?

Dr. Phillips:                 

So, that really depends on a stage and also whether we meet certain sort of criteria to treat. So, we don’t have to treat right away. So, if a patient has a disease, and the disease is not in an area where we think it’s curative, for the most part we can enter into what we call a watch and wait. Meaning we will observe a patient very closely and defer treatment until the patient develops symptoms or other indications that warrant treatment.

We do know that there is no impact on longevity by sort of partaking in this approach. So, you won’t live any longer or you won’t live any shorter if we watch and wait versus initiating therapy right away. It just saves you from having some of the toxicities from treatment without any real major benefits.

So, remember the goal for most patients with follicular lymphoma is to alleviate symptoms or problems. If you don’t have a symptom or a problem, me giving you treatment is not going to make you feel any better. Actually, it would probably make you feel a little bit worse. To get you back to where you were when you started.                    

Katherine:                  

Yeah, right. What do you feel is the patient’s role in treatment decisions?

Dr. Phillips:                 

So, I know historically a lot of times, you come into an office, and we tell you what you’re going to get and what you’re not going to get. Patients nowadays are I would say a lot more savvy as far as what drugs are out there. And there are a lot more sort of conversational groups on social media between patients who’ve had treatment before and newly diagnosed patients. So, patients come in with a lot more information than they had historically had before. So, in that point, I think it’s more of an open dialogue about what options we have, what options are best for you, and what our treatment goals are at that point.

But all it means, given that we don’t yet have a standard of care, it leaves it open for discussion about sort of which route we choose to try to get your cancer under control.

Katherine:                  

Mm-hmm. Dr. Phillips, if a patient isn’t feeling confident with their treatment plan or their care, do you think they should consider a second opinion or a consult with a specialist?

Dr. Phillips:                 

I think a second opinion is probably best for all patients. It’s always probably good to get a different opinion about how the disease will be treated. So, I do encourage all my patients, even here, to get a second opinion. Some take me up on it, others won’t. But the option is always there to get a second opinion, just to see if anybody would do things any differently.

And I would say for the most part, most people would tend to treat the same way. Very seldom do we have differences in what our treatment recommendations would be. I think the biggest difference in some situations, 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.

Katherine:                  

Mm-hmm. What would you say to a patient who may be nervous about offending their current doctor by getting a second opinion?

Dr. Phillips:                 

You shouldn’t be. If your doctor is offended because you’re getting a second opinion, that’s probably not the doctor for you. Yeah, I think that at this point, any physician that’s confident in their decision they’re giving you should not be offended if you go seek reassurance from somebody else.

Katherine:                  

Yeah, good advice. Thank you. Now that we’ve discussed factors that can impact treatment decisions, would you walk us through the currently available follicular lymphoma treatment approaches? And who they might be right for?

Dr. Phillips:                 

Sure. So, we’ll start with the newly diagnosed or untreated patient. So, again, if you’re newly diagnosed or untreated, your options are the monoclonal antibody, Rituximab. Again, that’s a CD20 monoclonal antibody.

That is typically given once weekly for four weeks and can be repeated, if need be, after a break. And that’s usually reserved for patients who have minimal symptoms, low burden disease. Because, again, data has shown that the bulkier the disease, you’re likely not to have a very durable or deep response with just simulating Rituximab. Additional options include Rituximab plus chemotherapy.

So, we have regimens such as CDP, which is Cytoxan, vincristine, and prednisone. Cytoxan and vincristine being a steroid, prednisone being — sorry, Cytoxan and vincristine being a chemotherapy agent, and prednisone being a steroid. We have our bendamustine, bendamustine being a chemotherapy agent. There’s R-CHOP, which is Cytoxan, vincristine, Adriamycin, and prednisone. And sometimes that is reserved, because unlike the other two, R-CHOP can only be given once because of the accumulation of the anthracycline.

You can only have so much of that in a lifetime before you run a risk of cardiac toxicity.

Katherine:                  

Oh.

Dr. Phillips:                 

And also, R-CHOP as of right now is a standard of care for diffuse large B-cell lymphoma. Which every patient with follicular lymphoma has a chance of transforming into diffuse large B-cell lymphoma at some point. So, we tend to try to reserve R-CHOP if we can. Additionally, more recently, there was a study called Relevance, which evaluated RPMO versus an agent called lenalidomide plus Rituximab, what we call R squared.

So, it was designed as a superiority study, but what came out of it is R squared is probably equivalent, not better, than R chemo. So that is also an option up front. With lenalidomide it’s a little bit different than the other agents, which all give it intravenously, meaning through the vein. But lenalidomide is an oral medication, that you would take 21 days on, and seven days off. And that’s given in conjunction with the Rituximab. And you typically would take that for 12 cycles, or about a year of treatment.

Whereas the chemotherapy regimens that I mentioned before, are typically given for six cycles. Meaning you’ll be taking it for a duration of 18 weeks or 24 weeks. So around four and half to six months for the chemotherapy. Thereafter, it’s a bit controversial, but some patients can then transition to what we call Rituximab maintenance.

Where you would get Rituximab every other month for a period of two to three years. Typically, two years, as a way to delay the return of the cancer. So, R maintenance we know of improves your progression of survival, so the time until the cancer comes back. And there is no survival benefit with maintenance at this point. So, it is in some ways a bit controversial. Especially now, given the pandemic.

Katherine:                  

What about stem cell transplant? Is that an option?

Dr. Phillips:                 

So, for up front, that’s usually not something that we typically do. So, for stem cell transplantation, there are two types of stem cell transplantation. There’s one called an Autologous Stem Cell Transplantation, which is basically really a stem cell rescue.

You get a high dose of chemotherapy after stem cells are collected from you and those stem cells are given back to rescue your body from the chemo. That is typically reserved for what we call high risk patients. So, we give you an initial up front chemotherapy regimen. And if your cancer comes back within less than 24 months of completion of that therapy, you fall into what we call a POD24 category. Which means Progression of Disease within 24 months.

We do know those patients are at higher risk, than patients who stay in remission for at least 24 months or longer. So, if we look at overall survival for those POD24 patients, about half of those patients will succumb to their disease within a five-year period. Which is much different for what we see with the standard for follicular lymphoma patients. So, and that POD24 category it does appear that Autologous Stem Cell Transplantation is beneficial in that patient population. As well as an Allogenic Stem Cell Transplant. So, an allogenic transplant is when you get immune cells from another donor.

So, “allo” meaning from a different person. So, in that sense, you get sort of temporized, and they would give you donor lymphocytes. And those lymphocytes themselves would try to fight off your cancer. So, an Auto transplant is mainly just chemo; an Allo transplant, the donor cells help fight off the cancer.

Katherine:                  

Right.

Dr. Phillips:                 

There are complications to both, which is why they’re not typically given up front. The Allo transplant probably has more risk of complications as well. Those cells can also recognize your body as being foreign and try to fight them off because they don’t originate from you. And there’s also just a risk of other death from that procedure. So, all those have to be taken with a bit of caution. And for the Allo transplant, it’s generally only recommended if you have that, a sibling donor. Because there’s much less risk of complications than versus you get an unrelated donor.

Katherine:                  

Right. Right, that makes sense. If someone receives treatment and then goes into remission, how are they monitored?

Dr. Phillips:                 

So, there’s a couple of different ways you can go about it.

Historically, what we would do is we would actually sometimes get CAT scans. But we’ve sort of pulled back from that in recent years. So, as of right now, the recommendation is really just clinical observation, meaning what I call well baby 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.

Katherine:                  

Yeah. We received this question from an audience member prior to the program. Angela asks, “What if I relapse after treatment? What are my options then?”

Dr. Phillips:                 

So, a lot of that, again, depends on the timing. If you relapse early, obviously whatever we gave you in the frontline we would not repeat. And again, if it’s within the 24-month period, again, that takes you on the road of POD24. Wherein patients who are fit enough, it would take you to a route where you would actually probably get a transplant. It’s consolidation to extend our true progression sabbatical.

If you relapse after 24 months, that would really depend on what you received in the frontline because some of these agents can be repeated. If we don’t repeat what you’ve had in a frontline setting – so again, if you’ve got R chemo, then a second line setting, normally what we would do now, based on published data from the augment study, is we would typically treat these patients with Rituximab and lenalidomide, which is that oral medication.

That’s typically if you did receive lenalidomide in the frontline setting and you would not want to repeat that, then we would typically give you R chemo in a second line setting. Again, in most of those situations, it would be RCP or Bendamustine and Rituximab.

Katherine:                  

Okay. Are there emerging approaches for treating follicular lymphoma that patients should know about?

Dr. Phillips:                 

There are. So, there are some more exciting data that’s coming out, specifically looking at CAR-T, which is chimeric antigen receptor therapy. So, these are augmented T cells that they collect from the patient, they help recognize – they help to modify those cancer cells to recognize the tumor more appropriately. And they target those tumor cells through a receptor called CD19 that’s present on the tumor.

So, that therapy has shown a significant overall response rate in follicular lymphoma. Even in very heavily pretreated patients. Right now, we’re still waiting on a longer follow up as far as the duration of the response, but as of right now it is a very encouraging therapy.

The downside to that therapy is that you can only receive it at select centers because they have to be a therapeutic approved center. So, you can’t just go sometimes to your regular oncologist’s in say, Skoboken or wherever, and get this treatment. So that’s one downside to that and also, it’s a very expensive treatment and you need insurance approval to cover that. Some of the side effects from that treatment we have gotten better at controlling, such as cytokine release syndrome, which can cause fever, low blood pressures, difficulty breathing.

That typically happens within a set period of time after the infusion of the [inaudible] and modified T cells. And then there’s also what we call neurotoxicity, meaning you can have some neurological complications. Which, again, we’ve become better at managing. There are a couple CAR-T products on the market right now; all of them seem very comparable and also effective in follicular lymphoma. There’s also treatments called bispecific antibodies, these are like causally off the shelf products, except they use an antibody.

And in this antibody it has sort of two receptors. So, earlier we talked about Rituximab, which is a CD20 antibody. The bispecifics have a CD20 antibody and a CD3 antibody set. So, they bind to the tumor and also bind to your T cells. And with the binding to the T-cells, they call it T-cell activation and expansion. And it will utilize your own T cells to fight off the cancer. So, because these bispecifics are given as an off the shelf product, they can likely be able to be given in more accessible areas.

So, you won’t have to select centers to be given. There are still some complications with those, such as CRS and neurotoxicity, but early reports indicate that they’re much less severe and less frequency than what we see with CAR-T. But as of right now, neither the duration of responses of these treatments are still to be determined. So, again, these are two exciting sort of avenues that are moving forward for patients with follicular lymphoma that will be further developed and sort of be expanded on in the coming years.

Katherine:                  

What about clinical trials? How do they fit in?

Dr. Phillips:                 

So, for patients with relapsed refractory disease and even some patients with untreated disease, clinical trials are sometimes your best avenue for getting some of these new and promising therapeutics before they get approval. I know sometimes patients are very cautious about clinical trials because they don’t want to be guinea pigs. But I would say all treatments that we offer you have started in clinical trials. And this is the only way to really advance the field. So, if your treating physician has a clinical trial for you, I would strongly recommend patients consider that.

Because, again, they are typically offering you something that they can’t offer you as a standard care, insurance approved treatment. And for the most part, they’re either adding drugs to what we do as far as standard of care treatment approach or offer you something that is very promising in the relapsed refractory setting or upfront setting. That compares very favorably to what we would give you as a standard of care option. That allows you to get this option sooner and earlier when you’re in better shape and less sort of beat up from the other treatments that we would give you.

Katherine:                  

I’d like to just go back for a second and ask you about inhibitor treatments.

Dr. Phillips:                 

Sure. So, as of right now, CAR-T with the chimeric antigen receptor therapy treatment is only approved for patients with relapsed refractory disease. The bispecific antibody therapies are only available in clinical trial. There are some other sort of cyclin inhibitors that haven’t gotten approval. So, we have the PO3 kind of Delta inhibitors, which inhibit the PO3 kind of pathway in a patient with follicular lymphoma.

There were four approved agents in this class of drugs. We had umbralisib, duvelisib, copanlisib, and idelalisib. More recently, two of those, idelalisib and duvelisib, have removed their indications for follicular lymphoma.

So, as of right now we have copanlisib which is an IDP kind of three dose inhibitor and umbralisib, which is an oral agent for the PO3 dose kind of inhibitor. So, both of those agents are typically usually targeted in the third line and beyond. So, patients who fail at least two lines of therapy. We also have tazemetostat, which is an EZH2 inhibitor, that was most recently improved. So, EZH2 mutations occur in about 20% of patients for follicular lymphoma.

But tazemetostat was actually approved for those with and without the mutation as it did show some efficacy in both. It appeared that the overall response rate was a bit higher than those who had an EZH2 mutation, with the duration of the response appears to be equivalent. But I do think for most parts in that situation, for those who lack the mutation the drug is typically used for patients who are unfit for other therapies. Whereas those who have the mutation, it typically probably will be used a bit earlier.

Katherine:                  

Okay. Excellent. Let’s take a moment to talk about patient self-advocacy. Patients can sometimes feel like they’re bothering their healthcare team with their questions and their comments. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Phillips:                 

Well, for the side effect part it’s important because your physician can’t potentially prevent the worst thing or further development of side effects. Nobody can. And also, they can’t prevent you from going to the hospital if you don’t let them know you have this certain side effects.

So, it’s very important to communicate side effects, because 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. Then for the best part, it’s best to communicate any concerns that you may have in regard to treatment, or any questions you may have so that you are well aware.

You can’t really fight this appropriately without sort of being well aware of what you’re dealing with, what we’re using to take care of the cancer, and what potential side effects may come up. Again, so we can, again, have you have the best experience possible to try to get your cancer under control. 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.

Katherine:                  

Dr. Phillips, to close, what would you like to leave the audience with? Are you hopeful?

Dr. Phillips:                 

So, I think follicular lymphoma, and lymphoma in general, we are having a better understanding of the biology of the cancer, certain things that are important to the cancer, and certain avenues that we can treat the cancer and avoid some toxicities that have sort of plagued us before. So, I think moving forward there is a ton of research going into improving outcomes for patients with lymphoma, and follicular lymphoma, in general. There are a ton of other treatment options that are coming down the pipe way.

So, I think patients with follicular lymphoma should be very hopeful and encouraged that we will just continue to improve the quality of life and also the duration that they can live with this cancer. I mean, as of right now, until we can cure this cancer, our real goal is to continue to buy you more time. And time buys you more treatments. And most of the treatments that we are developing and are coming, again, down the pipeline are less toxic than some of the things we had 5, 10, definitely 15, 20 years ago.

So, your experience and your quality of life will be improved, and these treatments will also give you more longevity than you could have ever expected. So, patients with lymphoma are living a lot longer and that’s not an important thing to remember. Not hopeful, not – sorry, it’s not hopeless, even though we may say we can’t cure your cancer, the goal is as of right now is to turn this into a chronic disease such as any other chronic disease. Something that you can live with, while managing control. Hopefully, you will continue to enjoy your life and your life won’t be cut short by this cancer.

Katherine:                  

Dr. Phillips, thanks so much for joining us today. We really appreciate it.

Dr. Phillips:                 

No, thank you. I really enjoyed it.

Katherine:                  

And thank you to all of our partners. Please continue to send in your questions to question@powerfulpatients.org. and we’ll work to get them answered in future programs. If you would like to watch this webinar again, there will be a replay available soon. You’ll received an email when it’s ready.

And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about follicular lymphoma, and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.

Medicare Doesn’t Cover Free At-Home Covid Tests, But You Still Have Other Options to Attain Free Ones

The Biden Administration’s new mandate that insurers cover the cost of at-home test did not include beneficiaries of Medicare. This is very unfortunate because Medicare recipients are the largest at-risk population.  

The new mandates that private insurers cover the cost of at-home-test – up to eight per enrollee per month. And, because Medicare enrollees are not participant of this mandate, this leaves many afraid of the consequences.   There are about 63.3 million people enrolled in Medicare and the majority of these beneficiaries, 55.1 million, are age 65 or older, and the rest, though younger, are generally people with disabilities. Many of which may have illnesses that leave them very vulnerable to COVID. 

The mandate which took place on January 15th, means that most consumers with private health coverage can buy at-home test at a store or online and either get it paid for upfront by their insurance company by submitting their insurance card or get reimbursed by submitting a claim to their insurer.  

Fortunately, there are still options for Medicare beneficiaries to get access to free COVID test. 

Here are your options:

  1. You can order four free tests through Covidtest.gov, a new government website that officially launched on January 15th. This site is available to all households not just Medicare beneficiaries. This is for 4 free at-home test per month/per household. Therefore, you may have to reorder every month.  
  2. You can also pick up at-home COVID test for free at Medicare-certified health clinics. 
  3. Community health centers. Be aware that currently demand for the test are outpacing supply, so plan accordingly. 
  4. For Medicare beneficiaries that are enrolled in a Medicare Advantage plan, reach out to your insurer as they may cover the cost of the at-home Covid test. It’s worth a try. The tests may be covered under a supplemental benefit through the insurer, not a required benefit.  
  5. Don’t forget the many testing sites that are offering free Covid testing. Beneficiaries can get the lab-based PCR test, (can take a few days to get back the test results) rapid PCR test, and the rapid antigen test. These sites were really stacked during the Holiday’s, they may be less busy now. A bonus is that many of these sites are drive through, providing you with less exposure to people. 
  6. Additionally, if a doctor or other authorized health-care provider orders the test, there is no cost-sharing. 
  7. Medicare beneficiaries are allowed to get one lab test for free per year without a doctor’s order. 

It hardly seems fair that Medicare beneficiaries have to jump through more hoops to get access to the free tests. However, this is due to the specific legal authority used to implement the directive. 

It seems that for now, this is how it will continue unless there’s another strong push for Medicare recipients to be included in the mandate. At which point It would require congressional action. For now, Don’t Hold Your Breath!! 

Breast Cancer Telemedicine Tips: How to Make the Most of Your Visit

We all have acknowledged that the silver lining of the COVID-19 pandemic has been the use of telehealth services. You should have a choice on who you feel comfortable with on your healthcare team and now telemedicine grants that choice to many populations.

Newly diagnosed breast cancer patients living in a rural area or farther from major academic health centers are now able to obtain second opinions from experts without travel and with minimal exposure to COVID-19. The quality of a televisit does not differ from an in-person visit. Although you’ll be without a physical exam, your provider can still prescribe medications and send you for various tests/blood work.

Tips

Know When to Use Telehealth

If you are unsure that your chief complaint requires a telehealth visit versus an in-person visit, ask. You can avoid an unnecessary trip or multiple appointments.

Find Out What Telehealth System Will Be Used

Will your appointment be via phone call, or will there be video? Is there an application you should download, or is it accessible via your web browser? Is this televisit covered by your insurance? Don’t be afraid to overprepare. In the end, it saves time and benefits everyone involved in the appointment.

Connect With a Plan

Telemedicine may seem less formal causing us to not be as prepared as we would for an in-person visit. Write your questions and concerns down. Just because you’re connecting virtually does not make your appointment time any less important.

Bring a Loved One

At first thought, you may see no reason why someone should accompany you to your telehealth visit; however, you still need that support. It’s okay to have someone in the room or even on camera with you. Your provider will not mind and will encourage it. Many times, emotions are high in the exam room, and we hear what our providers are saying, but we’re not really listening. Having support at your telehealth appointment ensures that you won’t be overwhelmed with trying to remember every detail. The best part is that with telehealth your loved one can join from almost anywhere in the world!

Stay Informed

Telehealth extends beyond appointments. It also includes patient portals. If you have a quick question for any member of your healthcare team, more than likely there is a system that you can use to quickly contact someone. Your patient portal can also give you easy access to results of blood tests, urinalysis, and more.

Telehealth services are likely here to stay. As you enter survivorship of your breast cancer care, annual visits can be maintained via telehealth. While in survivorship, you’ll most likely no longer be seeing multiple doctors on a regular basis for your care. With telehealth, you are able to maintain your health with one provider during survivorship without taking time off of work, finding childcare and/or sacrificing travel plans. As telehealth services continue to develop and to improve, the future of breast cancer care will steadily become more accessible.

Check out the following programs in our Breast Cancer TelemEDucation Resource Center:

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit from Patient Empowerment Network on Vimeo.

How can lung cancer patients optimize their telemedicine visits? Watch as lung cancer patient Jill shares her top tips for how to prepare for virtual visits and how to advocate for yourself when communicating for optimal care.

See More From Lung Cancer TelemEDucation

Download Guide

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

 

Transcript:

Jill:

One thing that someone else recently mentioned to me is to be patient with the doctor who might be late, and I don’t mind actually, the doctor’s late or early. I’ve had a doctor be up to half an hour early or up to an hour late, and that doesn’t bother me, I just go on living life and doing other things while I wait for the call, but I do book a bigger chunk of time on my calendar with the expectation that doctors are really busy people and they can’t always predict how long something else will go or what would come up, so it’s good to be understanding about it for sure. 

It’s also helpful for me and a lot of people to write a list of questions, symptoms, and make sure that you get them all answered, so write them down and actually check them off, or cross them off while you’re in the appointment, because you don’t wanna walk away from there thinking, oh shoot, there was that one big question I had and some doctors are okay with getting an email or something between appointments, and some nurses are great to call, but not everyone has that opportunity. 

So, I would say, make the most of your appointment just like you would in-person. Take good care to make sure that you’re advocating for yourself, and if the doctor says words after you ask your cost your question, you don’t feel like you understood them. Don’t be embarrassed or afraid or anything… just ask again, ask for clarification. Sometimes these doctors talk in big words, and my doctor has been great, my oncologist he would like draw pictures and I ask him often to write words down for me if I don’t know how to spell them because why would I know how to spell that? I don’t have a medical and oncology degree, so there’s no shame in asking questions, asking questions is smart, and it helps make us better informed, and it’s true that a better informed and a better-informed patient is a more empowered patient, and we tend to have better outcomes, when we know what’s going on in our treatment, so take the time to ask your questions.

_____________________________________________________________________________

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic from Patient Empowerment Network on Vimeo.

How can lung cancer patients stay hopeful during a pandemic? Watch as lung cancer patient Jill shares her advice on coping methods that have been helpful for her during the COVID-19 pandemic.

See More From Lung Cancer TelemEDucation

Download Guide

Related Programs:

 
Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Lung Cancer Advocate Shares Why Telemedicine Should Be a Long-Term Tool

 

Transcript:

Jill:

These are really hard times, and we need to recognize that we’re not alone, that we’re not the only ones, we’re not the only one going through the hard time, and it’s so important to reach out to others, to reach out to someone, to ask for help, and we hear some really, really sad stories of things like people being turned away from the ER or we can have a lot of fear about what might happen. And I think it’s really important to not let those fears rule our lives, that can be really challenging to do, it’s very easy to say, but it takes a lot of skills to live without letting fear take hold at times. So, reach out for help. Talk to people, ask them, how do they cope? What do they do? For me, I talked to friends and my friends help remind me of what’s real and what’s true, my friends helped me hold on to hope. I’m a person of faith, so I believe in Jesus, and I read the Bible and I pray, and that really helps me too.

But each person finds their own ways to hold on to hope and let go of fear, and fear is, fear is not our friend. Good things don’t come from fear. So the other thing is we need to be advocates for ourselves, sometimes we need to ask for what we want, and if we believe in something, we need to fight for it, we can’t just sit back and expect things to be dropped in our lap, so they’re gonna be tons, when we’re going to have to really, really work hard, and that could hurt and in my life is an advocate, I find there’s a lot of pain and a lot of hard work, but there’s also a lot of real joy, and I get to meet some of the most amazing new people, and those are people who helped me have hope, so grab a hold of the people who help you have hope and don’t let go, call them up and reach out to them, lean on them.