NCCN Guide for Caregivers

 

The National Comprehensive Cancer Network (NCCN) has published a new set of guidelines for caregivers of cancer patients. This is the first time such a guide has been published, at least by the NCCN.

The NCCN has other sets of guidelines. The best known is their sets of guidelines for oncologists. It helps them decide things like which treatment is best to try first, which is best to try after relapse, how often a patient should get a scan, and other decisions that are based on current research. It's similar to the guide from the EHA that I wrote about recently.

The NCCN also publishes a series of guides for patients, each one focused on a different type of cancer, including Follicular Lymphoma. The guides are very good, and are written in clear, easy-to-understand language.

So it is fitting that they would put out a guide for caregivers. And it has been absolutely needed. Given how important caregivers are, this kind of basic support is long overdue. Caregivers are often overlooked when we think about the important things in a cancer patient's life.

In my experience, in my own life and when talking with others, a caregiver is as surprised by a diagnosis as a cancer patient is. For most of us, no one prepared us to be a cancer patients. And no one prepares a caregiver to be a caregiver most of the time. Caregivers have no choice but to kind of make it up as they go along. They have to deal with the physical, emotional, and financial changes to a cancer patient's life, while often trying to live their own lives the same way they had before someone else’s diagnosis. It's a lot to deal with.

That's why I think this guide is so important. And it's not just useful for the caregiver of someone who is newly diagnosed. It's great advice for any caregiver, whether they are helping care for someone who was diagnosed a few weeks ago or many years ago. It's always a good time for a caregiver to get support.

The guide is divided up into several sections. The first one is on what caregiving is. That's important. I think lots of care givers don't realize that they are caregivers. Many of them probably think of a caregiver as someone providing support 24 hours a day. But even regularly helping with small tasks makes someone a caregiver.

Another section discusses the basics of cancer -- what cancer is, some typical types of treatments, some typical side effects that cancer patients deal with. This is one of the places that I think makes this guide so valuable. We all have our vision of what cancer is, but we don't always see it from the perspective of a caregiver. So this section is valuable in helping a caregiver understand what is happening and why. I think it would give many caregivers a bigger picture, which is probably very helpful to them.

Probably the best section (in my opinion) is the one that gives advice on making a caregiving plan. As I said, in my experience, most caregivers are dropped into their role without much time to think about it, and without much time after they begin caregiving to step back and think about the best way to handle things. This section gives some very good practical advice on how to care for someone with cancer day-to-day. It also points out something very important -- how caregiving changes depending on your relationship to the patient. Caring for a spouse is different from caring for a parent or grandparent. It's nice to have specific advice based on those relationship differences.

Another important section talks about the role of the caregiver as part of the larger cancer care team. I think that's incredibly important. We often think of our cancer care team as the healthcare professionals that we deal with -- our oncologist or hematologist, our nurses, hospital and doctors office staff members, various technologists, etc. Discussing the caregiver as an important part of this team puts the caregiver on the same level as these healthcare professionals. And that's where caregivers should be. Many caregivers spend much more time with the cancer patient than any of those healthcare professionals ever will. They know the patient best -- sometimes even better than the patient knows themselves. So discussing the caregiver's role on the same level as the oncologist’s is a really nice recognition of how important the caregiver is. And I hope caregivers who read this guide we'll see that, and believe it.

The last two sections give advice for the actual day-to-day care that a caregiver gives. First is how to take care of the patient. I'm guessing that by the time most caregivers read this, they will already have a very good idea of how to take care of the patient. But they may pick up some good advice anyway.

More important is the section on how a caregiver takes care of themselves. If you've ever spoken to a caregiver, had a deep and honest conversation with them, then you know how physically and emotionally exhausting that role can be. Self-care always comes second for the caregiver, in my experience. So some reminders about self-care are very valuable here. Just things like eating right, getting some exercise, trying to find time for yourself. And that's not always easy for a caregiver. Many of them are working a job while also caring. Free time is taken up by caring for the patient. Self-care comes last. There's a good reminder here that it's OK for the caregiver to get help. But that's not always possible. So it's also a good reminder for us if we are able to give someone else’s caregiver a break when we can.

A couple of interesting statistics from the guide. First is that 1in 4 adults in the United States will be a caregiver at some point. And the length of time they act as a caregiver averages about 5.5 years. As cancer treatments become better, and people live longer lives, the need for caregiving has become even more important.

One more point that the guide makes: caregivers aren’t perfect. And they don't need to be. We all have bad days, caregivers included. There are things we simply cannot do. The help that we can give sometimes has to be good enough.

As I have been reading this guide, I have been thinking about my own recent experience. It's been a long time since I needed help that was related to my status as a cancer patient. But I'm dealing with a shoulder injury and recovery from surgery right now, as I write this. My wife has been my chief caregiver for the last few weeks. And even though I'm getting stronger every day and more independent, there is still much that she needs to do for me. I see the time she puts in, not just at helping me with things like putting my socks on my feet and tying my shoes, and driving me to physical therapy or anywhere else I need to go. But she's also taken on a lot of the work that I have often done for us, like cooking meals, dealing with our dog, going to the grocery store, etc. It's frustrating for me to need the help,  though she does it without complaint, even though she’s dealing with her own health issues. So I have a very good reminder day-to-day of just how important caregivers are to patients. And I have a good reminder to make sure I say thank you.

If you have a caregiver in your life, I hope you'll show them this guide. If you know other patients, I hope you'll share it with them, so they can share it with the caregivers in their lives. They are such an important part of our care team. And even the small way of supporting them, by sharing a guide that might make their lives just a little bit easier, might be a nice way to say thank you.

Updated European Guidelines for Treating FL

The European Hematology Association just published its updated Follicular Lymphoma guidelines in the journal HemaSphere. The guidelines are pretty comprehensive. They include recommendations for diagnosis, staging, first treatment, second treatment, and treatments after relapse. But they also include information about survivorship, which is pretty nice.

The guidelines are slightly different, I think, from those in the United States. They also are based on very recent phase III clinical trial results. So they are about as up-to-date as you can find.

I'm not going to go through all of their recommendations. I think you should read them for yourself. Here's the link again. But there are a few things from the article that I find interesting and worth highlighting.

Before I go on, this is a very good time to remind you all that I am not a medical doctor. I'm not a cancer biologist. I’m just a Cancer Nerd -- a patient with a blog who likes to read a lot. What I write is not medical advice. The best person to talk to about your disease is your own oncologist. But I hope sharing some of this makes that conversation a little easier. That's always the goal here.

One thing that I really liked to see in the abstract was this: “The median overall survival at diagnosis now likely exceeds 20 years.” That's pretty remarkable. When I was diagnosed almost 19 years ago, the literature on FL put the median survival at 8 to 10 years. We've more than doubled it in that time. I'm going to write more about that soon.

But for now here are a few thoughts from EHA guidelines. First is diagnosis. The guidelines say that about 85% of FL patience have the t(14;18) gene mutation. There are other common mutations as well, but they don't recommend testing for them, because there still really isn't enough information about them to know if it's worth knowing that a patient has a KMT2D mutation, for example. I've said this before -- there's still lots of research that needs to be done on biomarkers for FL.

In their discussion about first treatments after diagnosis, the guidelines still recommend active surveillance (or watch and wait) for asymptomatic, low tumor burden disease. They also suggest straight Rituxan is acceptable, though this treatment does not increase Overall Survival when compared to watching and waiting.

I found this especially interesting: For patients who do need treatment, Iimmunochemotherapy is the recommendation. This could be Bendamustine or CHOP along with Rituxan or Obinutuzumab. I think it’s interesting because there is so much discussion these days about “moving on” from traditional chemotherapy.  They do mention R-squared as an option for a first treatment, but looking at the research, they say the clinical trials for R-squared showed it was comparable to Immunochemotherapy but not better. The guidelines say that Rituxan (or Obinutuzumab) maintenance is an option after Immunochemotherapy. Research shows that maintenance therapy extended Progression-Free Survival, but it did not increase Overall Survival. Patients who are susceptible to infection should not receive maintenance since it lowers immunity.

As for treatment at relapse, the guidelines recognize that there are many choices. Patients with asymptomatic disease can go back to watching and waiting. But for those who need treatment, the guidelines recommend R-squared. They also recommend considering R-Squared plus either Tafasitamab or Epcoritamab. Both of these combinations showed better response rates and longer PFS then just R-squared.

For patients who progress within 24 months after immunochemotherapy, the so-called POD24 group, options include CAR-T, though CAR-T after Bendamustine may be less effective because the Bendmustine messes with the T cells that are needed for CAR-T. The guidelines mention Stem Cell Transplants, which are still used, but much less frequently than in the past. There are many more options these days.

For patients who need a third line of treatment, the guidelines suggest Bispecific Antibodies, CAR-T, Zanubrutinib, and R-squared combinations. While there are several versions of Bispecifics and of CAR-T, the guidelines don’t recommend any particular version of either. They all have strengths and weaknesses that need to be considered when dealing with each individual patient.

The last section is on Survivorship. If you've been reading the blog for the last few years, you know Survivorship is becoming more and more important to me. Survivorship is what happens after treatment it's “finished.” The guidelines point out that about 90% of FL patients have a response to their first treatment. Most patients should see their oncologist  for two years after they are finished with treatment. After that, they can see the oncologist less often. Survivorship after treatment should focus on some common long-term side effects and issues, including infections, vaccinations, cardiovascular issues, secondary cancers, fatigue, and psychological well-being. I'm very glad they included that last one. I continue to believe that cancer patients’ and survivors’ mental health is greatly ignored. Other issues that FL patients have to deal with during Survivorship include employment, financial issues, and anxiety about the disease returning. All true, and I’m impressed tat they are acknowledged in the guidelines.

As I said, I really encourage you to look at the guidelines yourself. That's especially true if you live in Europe. These guidelines are a little different from what is often recommended in the United States. And it's important to remember, as the guidelines point out, that not every treatment is available or has been approved in every country in Europe. So these guidelines are just that -- guidelines. A conversation with your doctor that includes a discussion of your own goals for treatment, your overall health, your financial picture, and your emotional state is really important. Choosing a treatment should be more than just picking the treatment with the highest numbers. There's so much more to be considered.

I did find it very interesting to read these guidelines, and to think back about what was available to me 19 years ago. Guidelines like this are constantly evolving, as they should, because the treatment landscape is constantly evolving. I think it's really interesting that treatments like Bispecifics and CAR-T, which get so much attention here in the US, are not recommended until much later in the process here. I don't think that says something bad about the European Hematological Association. I think it says something more about the oncology journalism in the United States. Doctors get very excited about those treatments, with good reason. But it's good to see that in the real world, they are one (or two) of many different types of treatments.

And that's a good thing. We have lots of options. And as these guidelines show, we have lots of very smart people who look at the very big picture to help determine which treatments, and in which order, are likely to be most effective for us.

I also think it can be a bit overwhelming to look at all of these treatments available to us and wonder how we would ever choose which one to use. But thankfully we don't have to, and it's because of those smart people.

Remember, talk to your doctor. Have those conversations even before you need to.

More soon.

Patient Anxiety About Lab Test Results

 The JAMA Open Network has a really interesting article from just a few days ago called "Patient Anxiety About Immediately Released Laboratory Test Results." I've always found it really interesting how patients have reacted to the law in the U.S. that says test results need to be posted in their electronic records immediately, even before a doctor has had a chance to look at them. This article examines how patients react to lab results before a doctor sees them. I've had so many tests in the last few months that the idea is especially interesting to me now.

A little bit more background. In 2021 a law was passed that said patients have a right to see their lab results without a doctor interpreting them. And so most doctors and hospitals post the results to a patient's electronic records as soon as they are available. Foe example, a few weeks ago I had a blood test to prepare for my surgery. This coincided with my annual physical from my regular Primary Care Physician. As part of my physical, I do a complete blood test. So I had one test for both purposes -- my annual physical and my upcoming surgery. I had the test at 7:00 in the morning and I had the results by noon. I looked at them that afternoon. It wasn't until the next day that I got a message in my electronic records from my doctor that said there were a few things she wanted to talk about.

For some patients, that time gap could be very difficult emotionally. It was over a day until the doctor commented on the results, and then almost two weeks before we actually met to talk about the results. There has been a lot of commentary in the five years about this law, whether or not it is a good thing that patience can access their records without necessarily understanding what they mean. So this research from JAMA Open Network was meant to examine just how much anxiety patients experienced from seeing their test results, rather than meeting with a doctor to discuss them.

The study was conducted at one hospital in the United States. The researchers looked at electronic records to determine which patients accessed their laboratory results before they spoke to a doctor. They found almost 14,000 patients who had done that out of 234,000 that were seen at the hospital over 3 months. About 2/3 of them had already received an abnormal lab report within the previous 45 days.

Patients in the study were given surveys to determine how anxious they were while waiting for test results and then after getting them. About 28% of the patients reported feeling somewhat, very, or extremely anxious while waiting for the results. That's not surprising. In fact, it seems a little low to me. But it's also true that people get lab tests for all kinds of things, lots of which are routine. Interestingly, the groups that felt extremely anxious were usually female, had multiple health issues, or were between 35 and 49 years old. That age category is really interesting to me. That's when I was diagnosed with FL (at age 40). It's that time when you feel like you're too young to be sick, so you worry more when you might be. 

Patients also took a survey after they received their results. Almost all of them felt less anxious after getting their results. That might have been because the results were normal, and if they weren't normal, the implications weren't potentially life-changing. But it could also have been that, even with an abnormal result, the burden of waiting was gone. Just knowing you can start dealing with a problem can make it easier to deal with it. I think a few of us are familiar with that idea.

However 4.6% of the patients did feel more anxious after getting the results. The groups associated with this had higher anxiety before the test results, and interestingly, this increase in anxiety was not associated with receiving abnormal results. Except for one group: those who were potentially being diagnosed with cancer.

So all of that makes sense to me, too. Sometimes just knowing makes things better. And sometimes knowing it's cancer makes things worse.

The researchers gave one final survey. They wanted to know whether or not patients were going to look at the results on their own in the future. Of those 12,000 patients who took this final survey, about 88% planned to keep looking at results immediately on their own before a doctor looked at them. About 6% said they would wait to speak to a doctor first before looking at the results. And about 6% weren't sure. Even 80% of those patients who reported increased anxiety after getting the results said they planned to look at them on their own anyway.

It's an interesting study. I think I'm a little bit surprised that so few patients want to wait for a doctor or are less anxious after viewing results on their own. I probably shouldn't be surprised. We are kind of in a place now where people are taking more control of their own men health, which can be a good thing. I'm always in favor of patient empowerment, especially when it comes from patients getting information -- good, reliable information -- on their own. But I also know there is a downside to that. When people try to be their own doctor, especially with a serious health condition like cancer, so many things can go wrong.

So I would say we should all continue to educate ourselves, especially in ways that decrease our anxiety. For many of us with Follicular Lymphoma, it's a long road. We are likely to deal with the disease for many, many years. And that's a good thing. But we also need to recognize when we need help, when we can't do things on our own, when we are not the experts, and when our doctors are the experts. So keep reading, keep learning, and keep taking control of your health, while recognizing that there is much that we don't know.

 

Trispecific CAR-T

It's really hard to type with one hand. 

But here we go. I need to get back into practice. I read that ASH abstracts will be released around November 4, so I can't go into my busy season if I'm all out of shape.

I haven't been writing about newer research as much over the last month, so I've been looking at some articles that I had saved since then for something good to share.

I liked this one: "Safety and Clinical Outcomes of a First-in-Human Trial of Point-of-Care Manufactured Trispecific CAR T Cells Targeting CD19, CD20, and CD22" from the journal Blood Cancer Discovery. The researchers point out that while CAR-T can be very effective, it often stops working because of "antigen loss." This new way of using CAR-T might help with that. 

As a reminder: CAR-T stands for Chimeric Antigen Receptor T cells. A T cell is a type of immune cell, and is very good at finding invaders like viruses and bacteria. But our immune cells don't recognize cancer cells as invaders, because they aren't. Cancer cells are our own cells. They "belong" in our bodies. They just don't know how to die.

So with CAR-T, some T cells are removed from the patient, taken to a lab, and changed so they recognize the cancer cell as something that doesn't belong.  Then they can treat it like an invader and get rid of it. 

The feature on the cancer cell (or any actual invader) that gets recognized by a T cell is called an antigen. The immune system recognizes antigens once they have been encountered for the first time. That's what it means to be immune to something. You get a strain of flu, the immune system recognizes it, and if it encounters it again, it knows how to deal with it. A new strain shows up the next year, and you need a new vaccine to train your immune system.

So with CAR-T, the antigen that they are trained to recognize is usually a protein called CD19. Ideally, after those changed T cells have recognized the CD19 on the cancer cells, they will remember, and if the cancer returns, they will know to go after them. But that doesn't always last, and the CAR-T cells stop recognizing the CD19, and the treatment stops working.

The researchers from this study have a few solutions. The first is to create a "trispecific" T cell. Just like a bispecific antibody works by recognizing two proteins (bi = 2), a trispecific recognizes three of them (tri = 3). In this case, the T cells are changed so they can recognize not just CD19, but also CD20 and CD22, two other proteins that are commonly found on cancerous B cells (the cancer cell for Follicular Lymphoma). So if the T cell stops recognizing one of them, it may keep working by recognizing the others. 

The researchers have done two other things to help improve the CAR-T. First, they have also incorporated another protein called OX-40 int the process. This helps the T cell to bind more effectively in  a few ways (which I'm getting too tired to explain -- sorry). The third thing they tried is to cut down on the amount of time it takes to change the T cells to just 6 days. It typically takes 3 weeks. (That last one might be hard to make happen on  a large scale. The process of changing the cells is what usually makes CAR-T cost so much -- sometimes close to a half million dollars.)

All of this comes  from a very small phase 1 clinical trial -- just 16 patients. But it shows some of the work that is being done to make a very good treatment even better.

I suspect that a lot of the research at ASH this year will be along the same lines -- different ways of administering treatments, or dealing with side effects, or using different treatments in new combinations. That's all very good. Sometimes we move forward in big steps, and sometimes in little steps. But we move forward.

More soon. 

 

Update

Hello all. As I said in my last post, I had surgery on my shoulder last week. Thought I'd provide an update. You know I don't like to more than a week without posting.

The surgery seems like it went well. The surgeon told my wife that there was extensive damage to my shoulder. The situation that caused the injury really couldn't have done the damage that it did. It was probably in bad shape for a long time. I'm not at all surprised at this. I've had problems with my shoulders for many years. I had the same injury to my right shoulder about 12 years ago. It was only a matter of time that it happened to my left shoulder. So here we are.

I won't get into too much detail about the surgery, or the day it happened. It was kind of a typical experience with the U.S. healthcare system. Fighting with the insurance company about a prescription just before the surgery. Waiting around in a bed after I was prepped for about 3-4 hours. Being rushed out of the surgical center afterwards before I felt fully ready to leave. For the most part, individual people are caring and helpful. But they are caught up in a system that puts limits on how much they can care, or help. 

I've been home from work for a few days, but I'm already checking email, even though my boss told me not to. I can't help myself. I know what will be waiting for me when I get back.

My wife has been amazing, which is also not a surprise, taking over a lot of what I usually do for the family. Two of my kids have been able to help, too, despite their own busy lives. It's really hard for some people to be helpless, and I'm one of them. 

It reminds me of a situation from years ago, when I was getting treatment. Some friends offered to make dinner for us, which was wonderful of them. It felt weird to have someone do it, to be honest. My wife and I are usually the helpers, not the helped. Saying Yes to help can be tough. But if you're like me, ad someone offers to help, say Yes. It makes everyone feel good.

It's hard to type with one hand, even though my youngest teases me and says that's how I usually type anyway, which is sort of true. But writing also makes me feel good, so it's worth the effort.

I'll have more to say soon. I feel a little better every day. Thanks for reading.