Webinar: It’s Cancer, Now What?

Series: Non-Hodgkin Lymphoma

There are so many questions that follow a cancer diagnosis. Our panel of experts tackles the navigation that comes, focusing on non-Hodgkin lymphoma, bringing medical expert and patient insights on how to get through everything from:

• Managing all the appointments and information overload
• How to handle getting a second opinion
• Best approach to patient self-advocacy and also strengthening learnings from the medical team
• The overall treatment landscape for non-Hodgkin lymphoma
• Side effects & management tips
• Much more

The table of contents below will guide you through the transcript from our event. Thank you to our incredible panelists!

Webinar Transcript

Introductions

Stephanie: Hello. Good morning everyone, or good afternoon, depending on where you’re joining us from. I am going to give people another minute to join and trickle in, but a quick introduction.

My name is Stephanie. I’m with the Patient Story. I am so excited to have everyone here today joining us for this very important conversation, titled How to Empower Yourself After Diagnosis, something that’s very personal to me and to everyone on our panel in so many different respects. I’m so glad that everyone who’s here could join us. I want to be able to cover as much ground as possible.

Today, we’re going to really have three major sections, if you will, in this conversation. The first part will be about getting diagnosed. The second part will be about treatment and side effects. The third one will be about navigating life with cancer, which as we all know it’s a big topic, it’s a lot of ground to cover.

Again, hello to everyone who’s here and I want to take this first time to introduce our incredible panel of voices. I will let each of our panelists introduce themselves in a little more detail. I want to start with Karen DeMairo, who is the vice president of Education, Support, and Integration at The Leukemia & Lymphoma Society. Karen, I’m going to spotlight you now and please introduce yourself.

Karen DeMairo: Thank you, Stephanie. Thank you for having me today. As Stephanie said, I’m the vice president of Education, Support and Integration for the Leukemia & Lymphoma Society.

What that means is I oversee all of our educations and a number of our support programs, including everything that’s on the website, all of our educational materials, our videos, our webinars, our podcasts, things like that, as well as the number of the support programs that we have, including our LLS community, other things such as the chats, our nutrition services, and then some special projects that come up along the way, including our outreach to underserved communities.

Stephanie: Thank you so much, Karen. I appreciate that. I’m now going to spotlight Dr. David Miklos from Stanford Medical Center. Let’s see here.

Dr. Miklos, I was able to hear your name first when I interviewed one of your former patients and they were raving about you. I’m really thrilled that I was able to talk to you for The Patient Story. Can you talk a little bit more about what you do there at Stanford and what drives you to do the work?

Dr. David Miklos: Thanks, Stephanie. Thanks for inviting me to participate today. Patient outreach is definitely one of our priorities. I’m the chief of the blood and marrow and cell therapy program here at Stanford. That includes the allogeneic transplants, the autologous, and then the CAR-T.

I have a career of working on correlative translational research going back 20-some years to my training at Dana-Farber and now here at Stanford, trying to carry this forward, have been involved in CAR-T since the ZUMA-1 studies of 2015.

Patient outreach, educational materials helping empower the patients is critical. There are many technological obstructions and some, let’s say, litiginous problems out there, but these outreach webinars are a great way to start. Thank you for having me here today. I just can’t say enough of my colleagues at Stanford. If you have those kinds of problems, we can help you.

Stephanie: Thank you so much for that. Really appreciate that introduction. Last but not least, of course, Mags Bujalski, who’s a fellow non-Hodgkin’s lymphoma thriver.

Mags, I was able to talk to you for your story about a year or a little over a year ago. I would love for you to introduce yourself outside of the cancer context, because of course, we’re so much more than that. Then after that, if you could just go ahead and dive right into what it was like getting diagnosed, that will segue into our first part of the conversation.

Mags: Yes, absolutely. Thank you for having me, Stephanie, and hello to everyone. Thanks for joining us. My name is Mags. I’m currently 24 years old. I live in Canada. I work as a translator from French into English. I’m a dog-mom. I love to be on social media, run my YouTube channel. I recently started a blog, so that’s basically like me in a nutshell outside of my cancer diagnosis. I was diagnosed when I was 22 years old.

To make a long story short, I basically had a really weird swelling in my arm and a really bad cough. Didn’t think those two are related at all. I ended up going to a walk-in clinic. The doctor was amazing, send me for testing. When it came back looking funky, she sent me for further testing. After a few weeks, I found out that I had stage four primary mediastinal large B cell lymphoma, and my world was shaken upside down.

It was definitely a weird period of my life. I had just moved out with my boyfriend. I was really close to finishing university. I had just agreed to work at like my dream company and then I had this crazy diagnosis and I didn’t even know a thing about cancer at the time.

For me, it was really, it changed my life in like a completely different way. It was really hard, but it also taught me a lot.

I’m sure Stephanie will agree it’s a very life-changing experience at any point in your life. When you’re younger and it’s like this weird point of you’re trying to grow up and figure out who you are, but you’re facing all these crazy challenges that you never even imagined you’d have to face, it’s definitely something that changes you a lot.

That’s coming out at the other end of it. I definitely have a whole new respect for this whole world of cancer research, cancer treatment. It’s definitely amazing. I’ve learned a lot.

Stephanie: Thank you so much for that, Mags. I know it feels like not that long ago, even though it was four years ago I was diagnosed, but sometimes I just feel like it was the other day. There are these vivid parts of that memory and it stays with us. We’ll talk about that a little bit later too, in terms of the survivorship. It’s a big topic, so thank you, Mags, for introducing your story.

The Basics of Non-Hodgkin Lymphoma

What is non-Hodgkin lymphoma?

Dr. Miklos, I know that when you say non-Hodgkin lymphoma, it actually means a lot of different things. There’s dozens of subtypes. We have short time, but if you were to cover in general, what does it mean when you get diagnosed with the B-cell lymphoma and then we’ll go into T-cell, but just a general overview for the patients and caregivers watching today.

Dr. Miklos: Sure, Stephanie. Great point. When we consider blood B-lymphocyte cancer, it’s a little different than what we hear when people say lung cancer or breast cancer.

Lung cancer, 180,000 patients are diagnosed with this and we call it small cell or non-small cell. We’re not very reductionistic about that. I’m sure there’s much more biology to lung cancer that we’re all anxiously waiting to learn more about.

Again, lymphoma or non-Hodgkin’s lymphoma, and I’m going to put Hodgkin’s disease in here for a second because what we’re really talking about are the B lymphocytes that are integral to our adaptive immune responses.

We’re all students of immunology now that we’ve discussed our COVID vaccines and which one’s the best, and, oh, I had that immune response with fevers and achiness and maybe some lymphadenopathy. We understand immunity, which has evolved over 10,000 generations to become the most powerful way to eliminate those foreign proteins, microbes, viruses in our body.

Here’s the untoured bad outcomes of having an adaptive immune system. What you need to know about the B and T lymphocytes are that unlike every cell in the body, these cells are allowed to genetically change, mutate, inter-chromosomally recombine the DNA of the adaptive immune receptors.

The lymphocytes are a bit of wildcards in your body. They provide the immunity so that you can recognize 10 to the 12th different antigens in the world. That’s the cosmos moment, right? Carl Sagan, billions and billions of antigens, but they are doing this by taking a risk. By the rearrangement, the mutagenesis of the receptors that are only expressed in the T and B lymphocytes.

This is what really makes these molecules unique. They go through a maturation from a undifferentiated lymphocyte, progenitor, or a stem cell to the final B-cell that’s making antibodies called a plasma cell. They have correlates that are cancers that correspond to failure to proceed through the natural development of the bee immunity and each one of these has different names.

An early-stage would give you acute lymphoblastic leukemia, late stage in the plasma cells would give you multiple myeloma. The problems that we’re talking about today of non-Hodgkin’s lymphoma are frequently starting with chronic lymphoid leukemia, going through as listed here, follicular lymphomas, Burkitt lymphoma, mantle cell lymphoma, marginal zone lymphoma. We get 25 names and they really represent the individual breakages as normal maturation in the immune system blocks.

The normal progression breaks down due to mutations, and these mutations are occurring because essentially these cells are allowed to mutate.

Now, here’s the sobering thought. If we put all those malignancies that have the B lymphocyte together, we would have about 150,000 newly diagnosed patients every year with a B lymphocyte cancer.

It’s right up there with lung cancer, breast cancer and prostate cancer. We just give them different names.

Stephanie, I think it’s really important. It’s probably not going to surprise you that the most important thing that the patient needs to focus on at the beginning is making sure of the diagnosis because these names are tricky.

What I tell all of my family and friends when they say, “Could you refer me to a doctor or how do I help my friend Charlie?” Go to a large referral center, make sure your pathology is reviewed and make sure you’re part of a multimodality review at that center.

Resources for patients & caregivers from The LLS

Stephanie: Perfect, thank you. I know that was a lot to cover, so I appreciate you summing that up. We’re going to go into questions to ask too because that was a popular topic for people. I do want to ask Karen again from the LLS about some of the resources for patients and caregivers to better understand what a diagnosis is and what it brings. Karen?

Karen: Sure. I think, first and foremost, we always encourage everyone to call our information resource center. That’s our call center, as people will often refer to it. It is staffed with social workers, nurses, health educators that are highly trained oncology specialists, and they are there to answer questions about the disease, about treatments, anything that relates to now being diagnosed with a blood cancer and specifically here with a lymphoma. I think it’s very important to be able to talk to someone who can give them all of that information.

As you can see here, there is a list of resources that we have available. They can direct the patient or caregiver in the right direction to get whatever they need. Some people learn better by speaking to someone, but then if they would like a booklet on lymphoma or if they want to watch a webinar or listen to a podcast or attend an actual program, I think that they should take advantage of whatever information is out there.

Here you can see just a graphic of some of the things that we provide, but it’s always best to start with one of our specialists because then they can make sure you’re getting the right information for the questions that you have at that time.

Stephanie: Thank you for sharing that, Karen. I know you’ve been doing this for almost 25 years at the LLS. What have you found patients and caregivers really seek information about?

Karen: With lymphoma, it usually starts with what kind of lymphoma they have. They’re not always sure. They think it all gets lumped together. It’s having that conversation to say, okay, well, exactly what lymphoma it is, and then to talk about the types of treatment and make sure that they’re asking their physician the right questions, getting the information that they need.

Then from there, to be honest with you, a lot of times it goes in the direction of financial resources or what other supports there are out there. I know we’re going to talk about some of that later, but that’s really the direction it will normally take.

Tips on managing those first appointments (and so much information!)

Stephanie: Thanks for sharing that perspective. I thought it’s great to talk to someone who, again, has so much experience with patients and caregivers. Mags, we’re going to go now into questions to ask or things that you can do as a patient and as a caregiver to make it easier. We’ve learned through the process something.

One thing I learned was when I’m in the appointment with the doctor a lot of times, especially the first time around, and especially in the beginning when it’s super overwhelming, I’m like, “I don’t remember anything you just said.” Maybe they covered a lot, but I just don’t remember.

Someone else told me, ‘Hey, I bring in my phone and I ask the doctor, can I record you just so that I can replay it later?’

That way you can share with other people. I’m going to pull up one of your quotes from a story where you talked about having another set of eyes and ears in the room. What can you tell people in terms of what helped you?

Mags: Absolutely. I, at the beginning especially, brought my boyfriend with me. He knows me better than anyone else and he was just another set of ears. He would catch the things that I wouldn’t catch because I just felt overwhelmed because when it’s talking about you and your problems, you just feel overwhelmed. There’s lots going on inside your head. You’re not exactly absorbing everything the doctor is telling you. I’d bring him, he would also ask questions that I probably didn’t think of.

I think it’s important if you do want to bring someone that it’s someone that you trust, someone that you know has your best interest at heart, someone who is going to be there to support you and also be there to help you make decisions when you do need to.

I would also take notes on my phone. I did record once. Just make sure you always ask your doctor if that’s okay. I would take notes on my phone, already come with questions, already ready to go to ask. When it came to any sort of papers or scans, I would just always ask for a copy of them so I could take it home and review it later on when I had already digested and processed everything.

Stephanie: I feel like one of the common themes is, again, it’s hard to take in all this information, especially when you’re in the beginning stages and you’re getting the test done, the scan, the blood tests, maybe a bone marrow biopsy. Everyone’s trying to figure out what exactly you’re dealing with, as Dr. Miklos was describing, non-Hodgkin lymphoma, it’s dozens of different kinds of things, it’s dozens of subtypes, B-cell, T-cell, and everything else. Thanks for that, Mags.

Doctor perspective: how can patients approach questions and treatment decisions?

Stephanie: I want to ask you, Dr. Miklos, about questions to ask. You were in those conversations. Again, I know it’s tough because it depends on what kind of subtype you’ve been diagnosed with, but what are some of the considerations in asking questions between the patient, caregiver, and doctor?

Then, actually, also I noticed we have a question in the Q&A where someone asked, “I’m a caretaker. Sometimes it’s awkward to engage the oncologist with questions about things I’m reading online. The whole Dr. Google thing. Stay off Dr. Google. Any tips from you on how to effectively and respectfully do this?”

Dr. Miklos: The respectful part is the hardest challenge. You want to meet the patient, their care provider and the team wherever they are, and everybody comes at this from a different angle. Some are professors walking in with a PhD and they want the manuscripts, and others are unaware of what is lymphoma, what is cancer, and so we have to start at the beginning. That’s really the job of the physician and his care team.

Stephanie, I think the quick answers are for us is to build materials so that we can spend more time answering the patient’s questions and allowing patients to come up to speed with their care providers, their teams before the meeting.

Thank you to The Patient Story. I find an hour spent with Stephanie turns into about a thousand hours with my patients, because I frequently unashamedly just say, “Go to thepatientstory.com, go to the LLS website, go to the BMT Infonet.”

These are resources that are curated for the patients. I’d love to have my Stanford information up to date and changing and evolving, but the truth is, I’m either treating patients or working on websites.

I think that the patient outreach organizations that you’re highlighting today are really well-positioned and that the docs in the community should support what works. LLS and The Patient Story, BMT Infonet, these are places that we want our patients to go knowing that they’re going to get valid data.

Dr. Google, not so sure about. Got to tell you, I spend a lot of time refuting things that patients and families are insistent that they learned on Google. Of course, that does become a little bit distracting at a minimum.

I want to emphasize what Mags says, always come with at least another set of ears. I would definitely not be ashamed to ask, “Is it okay if I record you?”

I do respect when people ask me. Sometimes they don’t. That’s okay, as well. I have a lot of confidence. It comes from years of taking care of patients and I make mistakes, as well.

I often will make some disclosures of what I know and what I don’t know. Doctors really feel uncomfortable when they say, “I don’t know,” but I feel very comfortable saying when I don’t know the right answer.

Those would be my three starting points. Again, they’re valuing the external information resources, bringing a friend with you, going ahead and asking to record because it’s going to go past so fast, even 60 or 90 minutes. We have teams. My nurse coordinators, my fellows, my IT teams. I mean we have teams of people trying to help you every day. Our social workers are incredibly important to this role.

Every opportunity it’s like giving birth, right? Nobody really told you how to do this you learn every time you advance to that next step. Every interaction with your nurse and your doctor is another opportunity to learn.

Stephanie: Thank you so much, Dr. Miklos. I know it’s tough because it’s really a balance.

I think on the patient side, we hear a lot about the phrase self-advocacy which means just it’s your body, it’s your life, ask those questions.

At the same time, we have these medical experts we go to and with the endless amount of information that’s out there, it’s really that point. It’s curating what kind of information you’re really seeking.

I think this is a great segue, too, into, Karen, I know that the LLS provides these printable guides, right? Questions that you can ask your healthcare team. I’ll pull those up, but if you could highlight some of that, I think that’d be very helpful for our people today.

Karen: Yes, definitely. I mean first, I echo everything that both Mags and Dr. Miklos said. Totally agree with all of that, and then also looking at something like these printable guides. I mean, think of questions even before you go into the doctor’s office. There’s no reason not to come in with the list of things that you want to ask. Think about things when you have time to write them out and stuff when you don’t feel like you’re pressured.

I think that as Dr. Miklos said, they appreciate patients that come in with questions with someone else and when they write things down, because it only makes you a better patient, all right? It’s very easy to go to the website and to find some of these questions and to kind of pick and choose what works best for you.

I think the other thing is that to be upfront if you want your caregiver involved with all of these conversations and if you want your healthcare team to let your caregiver know about what’s going on. There’s all of these HIPAA regulations and stuff, but if you make it known that they should be part, and I mean really part of your care, then the care team will make sure that that is the case.

Definitely, Mags, you and Stephanie both said that you learned, all right? Well, what we would like today is for new patients not to have to go through that learning curve or make it very easy and not as steep maybe as you did because we’re now providing them with the tools that they need to make that a little bit easier.

Stephanie: Yes, absolutely. Thank you for sharing that. I think the key is understanding maybe what other people have learned from their time before you, and so whether it’s these credible guides from the LLS or Mags’ story on The Patient Story, you read what she went through and what you learned, Mags, for the process, I think these are very valuable.

Should patients and caregivers get a second opinion?

Stephanie: I want to just segue now into the topic of second opinions. I actually do, I’m going to put a couple polls up, I kind of skipped one or two. One I think is just about whether someone did seek a second opinion. Karen, first, do you have any sort of guidance to people? I think there was a printable guide from the LLS, but just anything you’d like to add about whether someone should seek second opinions or what questions they should ask in that process.

Karen: Yes, we do have a guide with some questions that a patient can use in terms of thinking about a second opinion or what they should do when they seek a second opinion. I think one of the things that people need to think about is everyone deserves a second opinion, right?

We’re talking about cancer. This is not a common cold or a virus, so you want to make sure you’re getting the best care that’s available.

Now, also think about:

• The physician that you’re with, is it the right fit? When you talk about treatment, are they listening to your concerns?
• What about the office staff? How important is how the office staff treats you?
• Is insurance a problem? Which could very well come into play.

Thinking about those things, and then there’s no reason you can’t tell the physician “I’d like to seek a second opinion.”

Sometimes it’s just verifying what they told you and you come back to that physician, but I think that this is an important enough situation that you should make sure that you’re getting the best treatment possible, not only with the disease, itself, but for you as a person and what works best for you and to think about those things.

I mean, you call your insurance companies, see where there’s coverage. Reach out to either us or another one of the lymphoma groups to find out where the lymphoma experts are in your area, and things like that. I think that everyone is entitled to a second opinion and should clearly think about it.

Stephanie: Great. Thank you so much, Karen. I want to now go to you, Mags, and I’m going to pull up something again you quoted in the– or you said in the story that you shared on the Patient Story about, look, I didn’t really know, so you just went with the first opinion. Can you talk a little bit more about how you went about that decision?

Mags: Yes, absolutely. For me in my case, it was more of like, just scared. Was told it was stage four, was told it was we needed to hop on it right away, was told I couldn’t really wait. I think just being again so young, I didn’t really know, and this was something that was super-duper serious and the first really serious thing that I had ever experienced. I trusted the doctor. I trusted the oncologist that I was like, I guess, assigned.

Do I wish I’d gotten a second opinion? I mean looking back now, I think it would have definitely been helpful to get a second opinion. Like I said, I think everyone should get a second opinion.

Again, I think it was just at the time I was scared, I was worried that if I waited longer it would get even worse and I didn’t really know what I was getting myself into.

That being said, I do really trust the healthcare system that we have here in my city. We have some pretty big hospitals that are doing lots of research for cancer. I just trusted that I was being put in good hands.

I had been told by other people that I had seen prior that this oncologist was good, so I just trusted it. I’m happy that I did, but at the end of the day, I think if you think you should get a second opinion, you definitely should.

Stephanie: Perfect. A lot of it is there’s so many different factors, right? It’s the rapport that you have with your doctor on the medical team, maybe your situation is it very special, is there a more rare diagnosis, do you need to seek out a specialist? I mean, there are a lot of things to consider here.

Doctor’s perspective on patients seeking second opinions

Stephanie: Dr. Miklos, I’m curious to hear your opinion on the physician side. How you approach the conversation of second opinions and any suggestions you have for patients and caregivers on that?

Miklos: Well, that’s a tough question because essentially, if everybody got a second opinion we’d be doubling the effort for what would be you would think something that we should have gotten right the first time. In the perfect world, that would be ridiculous to think that everybody– I mean not ridiculous, but it would be counterproductive.

Now, I think you might be, Mags, may be another way of putting it would be, everybody deserves an opportunity to go to a center of excellence where they can go through that process of pathology review, multi-modality review, having a tumor board where multiple experts are tuning in and giving their opinions together so that we really can leave the room and the experience with the confidence that this is the correct therapy going forward.

Sometimes that might be the first place that you were fortunate enough to be sent to by your primary care doctor. If it wasn’t the first place that you were sent to, then yes, you should go to that second excellence.

I’m going to come back to my original statement, not so much emphasizing the need for a second opinion, but that patients with lymphoma need to have their pathology reviewed and have their case discussed in a tumor board environment with multiple experts at a tertiary cancer center.

That’s why these comprehensive cancer center programs are funded by the federal government, the NCI in particular, to make sure the outreach to the community serving the patients and the oncologists in the community who can then do a lot of the heavy lifting and build that relationship with the patient that’s come to them and trusting them.

I think that second opinions just a third name. They needed that name of centralized review, the tumor board, the cancer excellence, the comprehensive review.

Stephanie: It may not be in another place, but that you’re getting the right process just from where you go initially, so getting multiple voices on that I think is the key here.

Treatments for Non-Hodgkin Lymphoma

What is the landscape like for first line treatment for non-Hodgkin’s lymphoma?

Stephanie: Actually, Dr. Miklos, I’d like to transition now into talking about treatments period. I know again that we’re covering a broad topic, but how would you describe for first-line primary treatment what the landscape is for non-Hodgkin’s?

Dr. Miklos: That’s a terrific question, Stephanie. This maybe gets back to the question about, does everybody need to go to the second opinion.

The upfront therapy for all of the B-cell malignancies that are called non-Hodgkin’s lymphoma is almost always going to be a combination chemotherapy that we now have a name for CHOP. This is a combination of cyclophosphamide, Adriamycin (doxorubicin or hydroxydaunorubicin), Oncovin (vincristine), and prednisone with rituximab added in, so CHOP-R. There’ve been many studies over the last 40 years comparing CHOP to other combinations, and CHOP just keeps winning.

The upfront therapy for non-Hodgkin’s lymphoma has remained solidly focused on CHOP rituximab, and fortunately, 60% of the patients achieve a durable long-term remission with this type of therapy. I hope I’m talking to two people who were able to benefit from that straightforward therapy.

These do cause hair loss. They are an every 21-day treatment. It does happen six cycles usually and with staging studies using PET scans for diffuse large-cell lymphoma. Those are critical elements.

»MORE: Patients describe dealing with hair loss during cancer treatment

How can you gauge whether the chemotherapy is working?

Dr. Miklos: CHOP chemotherapy, two to three rounds, is it working? A PET scan, which is a therapy that uses radioactive glucose to monitor the metabolic uptake of cancer in combination with CT imaging three-dimensional structures that allow us to measure the cancer.

Then at the end of the therapy, it should be all gone, you’re in remission and that we do not have any indication of persistent metabolically active disease. If there is, then another biopsy is necessary. That is by far the most straightforward therapy that, again, about 150,000 patients a year should be getting.

(Audience) Describe radiation as part of the treatment

Stephanie: Great. Thank you so much. Actually, we did have an audience question before from Matthew B, who was diagnosed with PMBCL, so same as Mags. His question was, what should I expect going into radiation for my PMBCL in the upper right chest? Now I know this is a case that’s not your patient, but…

Dr. Miklos: No, of course, and again, now I’m wrong already. Case number one, and I’m already wrong because we know from a large Phase 2 studies done at Stanford and the National Cancer Institute that a more intensified chemotherapy for primary mediastinal B-cell lymphoma or PMBCL is necessary. This is a drug combination that we call R-EPOCH and its same drugs, but more intensified higher doses. Continuous pumps are involved.

Then if the patient had bulky disease with lymph nodes greater than 10 centimeters before the beginning of therapy, it would be standard of care to have a consolidated radiation at the end of the R-EPOCH.

Now, this is also becoming a challenging space and again, one of the reasons why you’d want to be seen at a center for excellence, because there is an upcoming role for CAR-T cells in this disease when patients have refractory to initial chemotherapy.

The role of CAR T-cell therapy in relapsed/refractory lymphoma

I don’t know when you want to talk about this, Stephanie, but the original indications for a personalized therapy that attacks the cancer using your own immune system by genetically changing your lymphocytes and supercharging those cells to fight the cancer has many advantages that we’ve discussed on The Patient Story previously.

These CAR-T cells I think we should, at some point, point out the challenges, we move something from investigational to standard of care, but in third line after you’ve had two other types of treatment to what is soon going to become second line therapy. You always want to have this–every patient has a fear of missing out, FOMO, because it’s changing so fast. Look, I just already restated what I told you that everyone should start with R-CHOP and I just pointed out that no, you should get R-EPOCH. Then should you get radiation?

Well, certainly in the past, yes, but should you be considering in the future potentially going with a CAR-T cell? The answer is not today because we don’t have that indication, but probably that will be the therapy in December. Today, your question is very appropriate. You should probably be getting radiation therapy.

It’s really a judgment call with your oncologist, radiation oncologist, and that tumor board review as to whether you should be receiving chemotherapy, another type of chemotherapy in addition to the radiation therapy, or did you have a very good response, potentially a complete response with the upfront R-EPOCH and the radiation is a consolidation.

Again, I don’t have all your details, but you’re getting a sense of how complicated this can be. Imagine if you get into second, third or fourth rounds of therapies where other things have already not gotten you a lifelong care.

Stephanie: I appreciate you even tackling that question, Dr. Miklos because again, these are not your patients. I know there’s a lot of different considerations. You have to know the patient history, but I’m glad you also brought up the CAR-T. There’s a lot of new research and clinical trials and things happening and already approved different lines of treatment in this space, which as someone who is diagnosed with non-Hodgkin’s makes me feel a little bit better just in case.

For people who want to dive into more of Dr. Miklos’s research and what he has to say about this, please go to The Patient Story. We’ll drop that link also later.

Patient perspective: Describe the R-CHOP chemo regimen

I do want to ask Mags now, you went through R-CHOP as Dr. Miklos said, that’s the standard. Can you just describe what that was like for you? Then we’re going to segue into side effects as well. You can talk about the hair loss and stuff like that.

Mags: Yes, absolutely. It was exactly as he said. I chose to do it through an IV. I didn’t want a PICC or a port; however, I know that’s not an option for everybody, but I chose to get IV.

It was six cycles. It was like a full day of injection. I would go in at about 9:00 AM and then I would stay there until about 3:00, 4:00 PM, and then I was done for the next three weeks. I would say that the side effects probably lasted a week for me. The biggest one was obviously the hair loss. I lost my hair two weeks after my first treatment.

Second, would definitely be the nausea. The nausea is probably I think the hardest one to manage for me, just because you just constantly felt sick.

Otherwise, it was headaches and just really like loss of energy. Minor things such as mild sores I’d get from time to time, constipation from time to time, but I think the major ones for me were definitely the nausea and the headaches.

Treatment Side Effects & Management

What helped prevent or reduce the side effects?

I tried my best to not have to take medications for it. That was just a really personal choice. I’d tried to do just like ginger or just really finding what kinds of foods worked for me. I knew that for me personally, smell was a huge trigger for my nausea.

I would just try to eat bland foods, not have things with smells. When it came to headaches, I would just try to rest as much as I could, drink water, cold or hot, whatever felt better at the time and just find my own little ways to manage my side effects.

Then I think the first two rounds were definitely the hardest because I didn’t really know what to expect, but I think as the treatments progressed around three, four, five, six, I was able to manage them a little bit better, although my body was getting weaker.

Yes, but I do think that they vary from person to person. However, I’ve been told that the side effects that I had are pretty common for the regimen that I did.

Stephanie: Thank you for sharing that, and, of course, these are the pictures that Mags had sent in to show what you were going through treatment. It’s, of course, depends on the person. Everyone has different side effects and impacts them differently.

I know for some people in the beginning it’s easier, and then it gets harder because it’s cumulative. For other people, they say you know what to expect and then you can handle it better so it gets better in that way.

One thing I would like to offer is just getting out ahead. Especially with nausea, for me, if I felt it, it was too late. As soon as I was chasing, it was way too overwhelming.

I took the nausea medication beforehand, for instance.

How did you manage the hair loss?

Great. I want to talk about the hair loss, too, Mags, because that’s such a big topic for people. You had also mentioned about wigs and how you bought it, but you didn’t really use it. Just if you could give us a summary of what that was like for you and how you made those decisions.

Mags: Yes, like I said, I lost my hair, probably, I think it was two weeks to the day that I started my first treatment. I remember my friend was like, “Oh, your hair is still here.” I was like, “Yes, I haven’t felt any hair loss.” Then later that day, it was just like, I had clumps coming out and I was like, “Great, here we go.” It was probably about four to five days until it was just so bad that I decided to completely just take all the hair off because it was harder to watch it fall rather than to just save it all off.

I did choose to get a wig. I think for me, especially at first, when I was told that I was going to lose my long blonde hair, that was super heartbreaking for me. Obviously, I asked if there’s anything that I could do to stop it. The oncologist said you can try this and this, but your hair is probably going to fall out regardless. You might as well just stop that now.

I did go and buy a wig. My wig experience buying it was not the greatest, but I think with the information and the resources that I had at the time, it was just the best decision that I could have made for myself. I did wear my wigs whenever I left the house. I wear them until about, I think, six months post-chemo, that’s when I stopped wearing the wigs, but when I was at home, I definitely felt more comfortable with nothing on my head.

Anyone who’s worn wigs, you know it’s not the most comfortable thing in the world. Wearing it all day, it’s not fun, but yes, I found different wigs to use. Headscarves, baseball caps were wonderful. Really, it was just dependent on where I was going, what I was doing, what I was in the mood for.

Stephanie: Perfect. Just to second that wigs are really uncomfortable. I spent a lot on a natural human hair wig, and I used it maybe like three times. The third time was for my wedding because I was like, “I don’t want to walk down the aisle bald.” Thanks for sharing your experience, Mags.

By the way, for some people, if you wear the baseball cap, they have hair that’s attached to it. That was more comfortable for me because it wasn’t itchy. It was a cap material as opposed to the wig material. Some tips from former patient.

(Audience) Should a caregiver should stay with patient during infusions all day?

Stephanie: Mags, we have a question I’d love to answer live from Belinda Santos. She asks, “My husband will begin chemo soon, should I plan to be there with him at the infusion center all day? Or is this something I can drop them off for and return to pick up?”

Mags: I think that also depends on what the situation with COVID is, because currently where I live, you can’t have somebody with you at the time, but I don’t know what it’s like where you live. I definitely found that was helpful to have somebody, just because I’m a very independent person and I didn’t mind being on my own, but I was there all day long.

Yes, the nurses come check in on you, but you’re by yourself. You’re just sitting there. I would bring books and stuff, but it was definitely nice just to have my boyfriend there, just to talk or just to watch a movie together, even it’s just that comfort or something that you know close to you, and I could get him to get me snacks, so that was also a bonus.

Stephanie: Great. As you pointed out, it’s a good point, COVID, maybe there are different guidelines, and depends on which hospital or healthcare provider you’re at. Definitely, if you can and if you’re allowed, then it’s a nice, I guess, to have the company.

For R-CHOP, I actually underwent R-EPOCH because I had a slightly different diagnosis, but for R-CHOP, it’s the one infusion, usually once. Then there’s, yes. Maybe for that situation that you have the time, yes, hanging out in the infusion center gives the patient something to do to pass the time and feel less lonely, so that’s ideal. I’m so glad that COVID is hopefully, with the vaccinations happening, will allow for more of that to happen.

(Audience) How long does it take to recover from R-CHOP chemo?

I would like to address another attendee question. Let’s see here. I’m going to share it up here. It’s live and I also got one submitted. Dr. Miklos, this is to you. It says, “I am on the R-CHOP chemotherapy, how long after that last cycle does it take to recover, build white blood cells, and start to feel normal again?” To the best of your ability, if you could answer that one.

Dr. Miklos: Sure. The recovery from R-CHOP, R-EPOCH combination chemotherapy has both been relatively effective, within three to four months. Okay. I’d say three months would be my quick answer to after the conclusion of the final cycle of CHOP, but with the following caveat, that is, unless a pandemic comes along. For example, this year, we all have faced the issue of how do we get vaccinated against an entirely new antigen, the COVID vaccine.

You all must be aware by now that rituximab has been identified as one of the risk factors for having a poor antibody immune response to the treatment with the vaccine, and so while your immune response that you’ve developed over a lifetime, which has maintained a mature cell, mature T cells, mature plasma cells is intact, and it’s really relatively resistant to the chemo that we’re giving, the ability to make a new antibody T cell response to a vaccine or to an infection you get during the actual treatment is greatly limited.

I think a longer discussion would take a lot more time than that, but just to say, in general, you’re good to go in three months. Okay. Then, I think Stephanie, you and Mags could probably give a better answer. Were you good to go in three months? Did you feel good to go in three months?

Stephanie: That’s a great question. I’ll do a quick answer and then, Mags, to you. I actually ended up dealing with neutropenia for a couple of months after. It took some time. I think you said three months or so, I think that was about right for me.

Mags, I don’t know if that’s what the case was for you, and maybe if you could address– I don’t know. Normal means something different to everyone, but just maybe being able to have the normal energy levels again, how long did it take you to get there?

Mags: Yes, definitely. Not that I can remember the exact amount of time, but I definitely remember feeling really weak after my last round, because I think, the body’s been through so much, but it was definitely a recovery, but I would say probably about three months is pretty good.

I think I really tried to start putting myself back into normal life by going for longer walks and trying to do things that I was able to do more so towards my normal routine. I think that definitely helped me. I’d say, yes, three months is probably a good timeline to guesstimate.

Dr. Miklos: Karen and I are probably going to have to remind you young kids, that not everybody is as young as you.

The average age for non-Hodgkin’s lymphoma is probably 65. We have a lot of patients who are elderly, and going through even dose reduced to mini-CHOP chemotherapy, can leave them weakened for a much longer period than three months.

Obviously, we need to take into consideration where you started coming into the treatment and what your expectations will be afterwards. Thanks.

Stephanie: Absolutely. No, that’s a great point, there are so many factors to consider. Actually, Mags and I were diagnosed with the same that tends to try more young and female, which is the primary mediastinal, and less so the DLBCL.

(Audience) Can you prevent or slow blood counts from dropping?

Stephanie: On that note, Dr. Miklos, we did get Laura B is a DLBCL caregiver, and she just was wondering, is there anything someone can do to prevent or slow the blood counts from dropping? I guess she might’ve heard about vitamin C infusions. I’ll leave that to you.

Dr. Miklos: Thanks. I always remind people, I went to a medical school and not to a nutritional school, so I have to limit my comments here. The chemotherapy that you’re receiving is designed in order to interfere with cell replication and with the growth of cancer cells. That’s going to have an effect on the normal cells that are reproducing all the time blood, which has to replicate your platelets last five days.

You’re making platelets all the time. Red cells may last a hundred days, but you’re still having to refill your entire body with blood. Think of mucositis, think of the mucosa from your lips to your anus as being a very sensitive site for the chemotherapy effects as well.

It’s very difficult without this targeted therapy to get the benefit of chemo toxic medicines that doesn’t impact the normal cells. If you were to find a shortcut through reducing the dose or adding an antidote that prevented that kind of killing, you would probably be decreasing the benefit to the tumor as well. When your doctor says, “Unfortunately, this is probably going to require 20 days to recover between cycles,” that is probably going to take 20 days to recover between cycles.

Stephanie, you brought an interesting point up. It sounds like you had recurrent intermittent neutropenia, which is a side effect that can follow rituximab B cell aplasia. It’s unpredictable and it’s hard to know who’s going to have that problem.

You probably got a lot of shots of G-CSF along the way, the growth factor that we all make in our bodies all the time. It has names like Zarxio or Neupogen. There’s an example where you can overcome a deficiency that was due to the therapy, and the lab testing was helpful to you to stay safe and know that you’re not going to have infectious risks.

I like a well-balanced diet. I encourage my patients to take a multivitamin, but I don’t encourage supplements or large things that require spoons to add extracts into your diet.

No, that’s not good, healthy diet, and focus on protein when you’re recovering from chemotherapy, avoid the carbohydrates, focus on the rebuilding of the body, protein.

(Audience) When should a patient be re-vaccinated for COVID-19?

Stephanie: Perfect. Thank you for that. I actually do want to– We have Ed F who’s a DLBCL patient. I’m going to just share his question on the screen. He also asked it live, but we have it here, which is, “Just completed six R-CHOP cycles for ABC-type DLBCL, was vaccinated prior to diagnosis, when should I get revaccinated for COVID-19?”

Dr. Miklos: That is an excellent question. Thank you, Ed. We’re all studying our patients at this point, trying to understand, will we expect the cancer patients who, like you, fortunately, got vaccinated beforehand?

I actually think you’ll have a very durable vaccine response. Again, the mature plasma cells and T Cells are going to be relatively resistant to the therapies you just got, so I think you are relatively protected.

The patients who didn’t get vaccinated before they were able to start the therapies because maybe the cancer came during the pandemic itself, those people are going to probably need to be revaccinated.

We don’t know how to advise them yet. There is some literature even today that says that some of our patients should be getting three shots, not two. We’re struggling with limited data as we measure the immune responses to the therapies right now.

I’m sure some of you at large cancer centers have been asked to participate in research studies where we’re collecting extra tubes of blood 3, 6, 12 months after the vaccines in order to see how durable your responses are. Thank you, if you are participating in those.

Suggested questions for side effects and treatments

Stephanie: Perfect. Thank you so much. We have so many questions going on, but I do want to shift it before we move too far down to Karen about, I know there are suggested questions by the LLS in terms of side effects and treatment, so we’ll pull up some slides. Karen, if you could talk about that.

Karen: Sure. I think that what patients should do is think about some of the things that are important to them. You both talked about hair before. There are patients that losing their hair is more of a crisis, say, than constant nausea or something like that, but half the conversation with your provider about what are the expected side effects.

There are going to be a lot of general ones and there are going to be side effects that you just don’t encounter, or that you will. Everybody’s different, as to Mags’ point before, but being able to have that conversation with the healthcare team and to be prepared for what may happen is always good.

Then again, to some of the things that Mags talked about is like, what can you do maybe to minimize them? You may not be able to always minimize the side effect, but at least to take care of it.

Stephanie, you talked about taking the antiemetics in advance, because who wants to be nauseous, you didn’t even want to get to that point. If that’s the case, then yes, talk to your doctor about what are the medications that you can take to avoid the nauseousness to begin with. Or, if it doesn’t matter, can you take something afterwards?

Also, when they were talking before about the vitamin C, most of the bigger institutions, if not all, you can have access to a dietician, to a nutritionist. I would say that you should take advantage of that, but then always go back to your doctor with whatever is being suggested, because you want to make sure that whatever supplement, or vitamin, or other type of complementary medicine, as we call it, does not interfere with your treatment.

Never just take something because it sounds good, or that it was suggested as a possible thing to take. Always go back to the doctor.

I think that the other thing, which is always very helpful, is to talk to other patients. How did they deal with a particular side effect, just on a practical level? Then you’ll find what works for you, what doesn’t work.

Again, Mags talked about things like smells and going with more blend foods and stuff. I had a patient that told me one time that the only thing that she could eat was hot spicy foods. I did exactly what you both did. I’m on the phone with her and had that look on my face. It worked for her. Wouldn’t work for somebody else, but it worked for her.

Again, getting suggestions, see what works, and then always the bottom line is making sure with your physician, with the healthcare team that what you’re doing does not interfere with your treatment.

Stephanie: Absolutely. Karen, that’s like the most important conversation, but I love– I know Karen talked about it and Dr. Miklos too, there are teams. You’ve got your oncologist and/or hematologist, and you’ve got maybe you have a radiation specialist, you have social workers at the hospital, you have nutritionists, and nurse practitioners and nurses who know a lot about side effects and management as well, so don’t be afraid to seek out those resources. Hopefully, you have them.

(Audience) What is the near or long-term damage on the body from chemo?

Stephanie: I do want to lob another question here from our live Q&A. Grace Ng says, “I’m a young patient getting my last chemo treatment this week. I don’t know what near or long-term damage the chemo has done in my body.

Do you have suggestions for recovery and restoring the body after chemo? Some external things I noticed is I get tired from walking and my skin is dry and damaged.” Anyone who wants to take that, feel free.

Dr. Miklos: I emphasize that there’s a role for– It’s a terrible name. I’m going to use it just distinguish. It’s a good name, it’s a good goal. Survivorship programs. I hope that we’ll come up with a better name than that because I hate to think of the non-survivorship programs.

What I like to think about is the care continuum, that what you’re going through frequently at the beginning is overwhelming lack of knowledge, needing a lot of support, needing good care, immediate expert attention.

Then as you go through this process, you’re going to come up with a lot of those questions, that what should I be doing about mammograms? What should I be doing about health maintenance? What should I be thinking about in regards to whether the radiation therapy has changed my lifelong risk for coronary artery disease?

Again, comprehensive cancer programs really have a requirement that they have these survivorship programs in place for patients who’ve completed their therapy to provide them a summary of what the therapy was, to provide them a plan for what type of body surveying, follow up with your local docs, primary care docs.

• Am I at increased risk?
• Should I be going through more skin dermatology reviews?
• What else should I be thinking about going forward now that I’ve gotten past the first year or more of my cancer therapy?

Guys, we need a better name than survivorship program.

Stephanie: I do like “thrivers” just because I know survivor has this weird connotation. I consider a survivor, anyone who just starts treatment. You just, as soon as you get there, that’s what it is. I know we’re coming up on time.

(Audience) Is it necessary to get regular scans after a clear mid-treatment scan?

We have so many questions I’d like to get in. I do have two I’d like to spotlight for you, Dr. Miklos, we could quickly cover so we can just spend a few minutes on the last section here. Here are the audience questions, it is, “Is it necessary to get scans regularly post-chemo after getting a clear scan mid-treatment?” That’s from Cher, a PMBCL patient. An anonymous caregiver asked, is a PET scan the only way to, “tell that it’s really gone?”

Dr. Miklos: Timely question. It is necessary to have scans. First of all, it’s very necessary to have your therapy full dose on schedule. I want to just say this again, everybody of course would like to have it more convenient and to have it changed in a way that they can handle their trip and all this, but these therapies are designed with a tempo of the cancer cell recovery, and we don’t want to let that cell to get an advantage. Full therapy on schedule is really an important theme you and your doctor should try to maintain.

Then the question becomes, so getting these scans in a timely manner so that it doesn’t slow down your therapy is really important, as well. Knowing that a PET scan should be obtained around 16 to 18 days after the therapy that you’re trying to assess, knowing that then you have three or four days to look at that PET scan and still stay on schedule for that retreatment at day 21. That’s a really important concept.

(Audience) Is a PET scan the only way to tell the cancer is gone?

Dr. Miklos: PET scanning is doing two things. It’s measuring the size of the tumor and it’s looking at the metabolic activity of the tumor. Is the tumor dead, or is it still dividing and taking up that radioactive sugar? That metabolic remission is the only way we can measure it by a PET scan.

Just to jump ahead, there might be new things in the offing. We just published this week, a study looking at a blood test that measures the rearrangement of a DNA marker that’s unique to your patient’s cancer, that can be obtained commercially going forward.

It’s a shameless plug, but this is next-generation sequencing of the B cell immune receptor. Then, measuring the tumor at a distance by sampling that DNA floating in the liquid component of your blood.

This is how research develops. I’ll just say, Dr. Matt Frank and I published that in JCO (Journal of Clinical Oncology) last week. Today, the real-time today, PET scans, and CT scans, and a normal CBC with your doctor is the way that you manage your patient’s disease response and knowing what’s next.

Navigating Life with Cancer

(Audience) Did you share your cancer diagnosis publicly?

Stephanie: Perfect. Thank you so much, Dr. Miklos. I do want to go into this section now. For anyone who has an open question, we’ll dedicate a couple of minutes in just a second.

First, the support mentally and emotionally after getting diagnosed and through treatment and then even after is a huge topic. Mags, I’m going to throw this one to you. If you could just talk about how you tended to your mental and emotional health, and then there’s a question here about how you were able to handle the diagnosis, socially and to what extent you shared it publicly?

Mags: Yes. I actually shared my story really publicly. I went on YouTube and Instagram about it. That wasn’t the plan from the beginning. I really wanted to just fly under the radar, get this over with, and then come back up after I was done treatment, but then I just had thought about it and I realized, for many different reasons, that I actually wanted to share my story. That is how I ended up finding my community. I think, for me, managing my emotions was really through my community.

I was able to find not only people that were similar ages with me that were going through cancer at the same time as me, but people who had the same diagnosis as me. I think there’s just a certain level of comfort when you can talk to somebody who gets exactly what you’re going through.

Yes, you can talk to your family, yes, you can talk to your doctors, but nobody really knows what it’s like to go through cancer better than someone who has gone through cancer or is going through it at the same time. That is how I found out how to manage certain things, how to find out which questions to ask, what I could potentially look like.

It was also very helpful for me in my recovery following a girl that was months ahead of me in her hair growth process, and that gave me motivation. That really helped me emotionally feel better, that in six months, this is what my hair might look like. Things like that. Or, “Oh, they’re able to go back to work. They’re able to go back to their life.”

That gave me the motivation that it’s coming for me too. That eventually, that will be me as well.

(Audience) How did you manage the mental and emotional stress after diagnosis?

I did actually begin therapy after completing treatment to deal with some things, but looking back at it now, I really do wish that I had done it through treatment because I think it would have been very beneficial for me.

For people who ask me how to do it, I say give it a try. I know that therapy is not for everybody, but I think giving it the try and seeing.

I was recommended to a therapist that worked with the cancer center that I go to, so he already knew what he was getting himself into, what he was dealing with when it came to cancer patients and how to manage what I was going through, and my types of questions. If that’s something that you’re open to, I think it’s definitely worth looking into.

Such also support groups. There are so many on Facebook, on Instagram, through the hospitals themselves, maybe not in person at the moment but through Zoom. I definitely think that there is lots of support out there, and that people should reach out and find what works for them.

As we mentioned earlier, not everything works for everybody, and so you can see what’s out there for you and just pick and choose what would be best for you.

How can you get financial support or deal with financial toxicity?

Stephanie: Awesome. Thank you, Mags. I want to ask Karen about a different kind of support too now, which is the financial aid support. For many people, maybe insurance will cover a lot, but for others, it might not be the case. We have so many different situations, and financial toxicity is the term that we use. What would you like to let people know on how they can better understand their options?

Karen: I think that one, they should talk to, if there’s someone available, a financial aid counselor at the institution or the group practice, if there’s someone because they’ll know exactly what they’re dealing with in terms of cost at the time, but then also, to reach out. Our information specialists can give information on all of the different programs that LLS has. Then also there’s other groups, such as Triage Cancer. They have a wealth of information and can help patients find the right type of assistance that they need. Patient Advocate Foundation.

There are so many groups out there that have various different types of funds. It’s really just a matter of making that phone call, and do not feel embarrassed. I think that’s one of the biggest things. This is a very expensive proposition and I think that– I can’t say that there’s anyone that goes through it without not needing some kind of help, right?

You should definitely reach out, let them know what you’re going through. Then, most times, whoever you’re talking to on the other end of the phone, regardless of which organization it is, they can walk you through as to what’s out there and what might be appropriate for you. Then know the questions to ask to trigger what it is that you should be looking for.

Stephanie: Appreciate that, Karen. Thank you. I know we’re over time and I want to respect– Dr. Miklos, yes?

You have a right to participate in clinical trials

Miklos: I want to make sure that everybody knows that you have the right to participate in clinical trials. That Medicare patients, that’s supported by law, and so all of you above 65, you want to participate in a clinical trial and somebody says that you’re not covered by insurance, you just need to go to a different doctor. That is not the situation that you should be hearing.

It does vary from state to state when you’re under 65, and so I won’t get into that debate, but clinical trials can be a way to avoid the financial toxicity, and at the same time, receive the cutting-edge therapies. We are, as physicians and researchers, trying to advance the field and frequently we’re looking at what is the standard, versus what we think is really much better based on a lot of data?

You can, again, avoid high-risk trials by looking and educating yourselves on how advanced the research in that field is Phase 2, Phase 3. Again, LLS is a good place to reach out to try to litmus test whether or not that would be a good study for me to participate in. Karen, I think that’s one of the things LLS does the best.

Karen: Actually, I was just going to bring that up on, if anybody is interested in finding out more about a clinical trial, needs a search done, we have our clinical trial support system with our nurse navigators who specifically walk the patients through from beginning to getting on a trial, if that’s the case. It doesn’t always mean that that’s where they end up, but they will at least take them through the whole process.

They will look at any of the barriers that may exist. They’ll talk to the physician, they’ll talk to the investigators, the primary investigators, and help them through the entire process. If for some reason, one trial doesn’t work out, they will help them look further, but definitely, if a clinical trial is even anywhere in your mind, I would suggest reaching out to us so we can help you.

Stephanie: Perfect. Yes, there are so many resources. I’m so glad we’re able to spotlight the ones that are at the LLS. We have a section on thepatientstory.com where we say, if you’re looking for a particular kind of help, whether it’s financial, or lodging, or transportation, we’ll have our suggestions there as well. I want to be respectful to all of your time.

(Audience) Does the radiation from scans increase risk of cancer?

There is one question here I wanted to throw out there, and then we can end with your final thoughts or last message to the people who are here today. It’s just about scans. I think this is one that’s really popular, so I just wanted to throw this to you, Dr. Miklos.

People ask about regular scans, can they lead to increased exposure to radiation, and hence, increased risk of cancer? This is something that we hear a lot. Then, the second part of that is, is it necessary to get the regular scans even after getting a clear one without experiencing symptoms?

Miklos: Sometimes, your insurance company helps you avoid this conundrum anyways. Medicare’s policy would be three scans following a therapy, so that is often going to be limited to another reason to develop blood tests that are going to avoid this problem.

Regular scans are disease-specific, and they never extend beyond two years following the diagnosis of the cancer. We’ve learned through many prospective studies that the patients are the ones who are, at that point, telling us about new symptoms and concerns that their cancer may be back. It’s very unlikely.

In fact, many studies have shown regular scans do not pick up the cancer in the period of time beyond the bulk of patients’ recurrences. It won’t surprise you that we ask for with diffuse large cell lymphoma or primary mediastinal, these aggressive lymphomas that we ask for scans at 3 months, 6 months, and 12 months after therapy because those are the time periods when recurrences are going to occur, and capturing the cancer early before you’re symptomatic on a scan like that, can really improve your ability to move to another therapy seamlessly and without some of the toxicities that come from the overwhelming growth of a cancer.

Final Thoughts from Panelists

Stephanie: Thank you so much. Dr. Miklos, what is your last message? We’re going to go into the round of last messages for people as we wrap this.

Miklos: Information is power. These webinars and patient-focused information sites that are well-curated like Patient Story and Leukemia, Lymphoma Society are absolutely essential, doing a service to both the patients and to the doctors. Thank you for doing this, Stephanie. Thank you for being here today, Karen. Mags, thank you for sharing your story.

Stephanie: Thank you so much, Dr. Miklos. I’m going to spotlight, Karen, what’s your last message to people here today?

Karen: Echoing what Dr. Miklos said, and just to understand, don’t do this alone. We are all here to help as little or as much as you need but don’t do it alone.

Stephanie: Perfect. Thank you so much, Karen, for your work at the LLS. Mags, if you could wrap with your final thoughts.

Mags: Absolutely. I say ditto to Dr. Miklos and Karen, whether that be from information from something like The Patient Story, from the LLS, and just adding to that community, having a community of people who understand you, who are in the same situation as you, helps you so much. It helped me tremendously, so I’d highly recommend whatever forum works best for you to reach out and find a community.

Stephanie: Perfect. Thank you to Karen, to Mags, to Dr. Miklos for joining us today. For those of you who were able to join today as well, if you have a question that wasn’t answered, we’ll try to get to that. Just sign up for our community and we’ll send you an email.

Everyone, have a great day. Again, thank you so much to our awesome panelists for sharing their thoughts today. Thank you so much.

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