Yale Cancer Answers: Lymphoma and Quality of Care

Happy World Lymphoma Day! I've already mentioned that this is Lymphoma Awareness Month, but today is officially the day dedicated to Lymphoma Awareness. 

The Lymphoma Coalition, which is a world-wide group of national Lymphoma advocacy groups from many different countries, points out this this is the 20th year that they are sponsoring this day. Their theme for this year is "Honest Talk: It's Time for Some Honest Talk about How We're Feeling." They want to focus this year on the emotional aspects of being a patient with lymphoma.

If you've been reading for a while, you know how I feel about this. As I like to say, with Follicular Lymphoma, many of us are asymptomatic or have symptoms that are stable. So for those patients, it's more about (or just as much as) dealing with emotional side effects as it is about physical side effects.

The Lymphoma Coalition offers some resources and suggestions for starting a conversation about being a patient. It can be awkward. As many of you probably know, sometimes people don't want to talk about it -- including the patients themselves. But talking can be a huge help. 

Take a look at what the Lymphoma Coalition suggests.

For this Awareness Day, I want to share a link to a recent broadcast of Yale Cancer Answers. This is a weekly radio show on a local station, sponsored by Yale Smilow Cancer Hospital, and features interviews with folks from the hospital and from Yale medical school talking about issues related to cancer. The topics range from the latest in individual cancer types to broader issues like financial toxicity or healthy eating. Yale Smilow is my cancer center, so I'm particularly interested in the show, and I check n often to see if they have done an episode that I can relate to.

The episode I want to link to is called "Improving Quality of Care," featuring an interview with Dr. Scott Huntington. Dr. Huntington is a Lymphoma specialist, and the first half of the interview focuses on his work as a hematologist. He gives some basic information about Lymphoma and about current treatments, especially CAR-T. He recognizes how important CAR-T has become, but also that it is imperfect. As much as we hope to improve first-line treatments for lymphomas (not just FL), for now, CAR-T seems most useful as a "back up" for initial treatments, especially for more aggressive Lymphoma types.

He also touches on Survivorship issues, something that I am obviously more and more interested in lately. He points out in particular that cancer survivors need t pay more attention to things like heart-related issues and making sure to do cancer screenings that are age-appropriate. 

The second half of the interview focuses on quality of care (Dr. Huntington is the Chief Quality Officer for the hospital, so his job is to evaluate and improve the way care is given to patients.)

One of the issues that he discusses is how Guidelines are created to make sure patients get quality care. There are groups like NCCN (the National Comprehensive Cancer Network) that use data to make sure the best care decisions are being recommended.

However, as good as those guidelines might be, each individual patient is different, and their disease, their circumstances, and their desires must all be taken into account. 

The conversation turned to what the quality of care might look like five years from now. Dr. Huntington talked about electronic health records. For now, they're useful to us as individuals. But maybe soon, all of that data could be useful to researchers -- going through thousands of electronic records can show patterns that might help improve care. Same with the feedback we give as patients, through our phones or our portals. Or maybe more of us use wearable devices, and that data helps doctors see where we are having problems (more accurately than we might report it at a visit to the doctor). It's interesting to think about. But it seems inevitable that technology will play a bigger role in our lives as patients in just a few years.

So I encourage you to listen to the radio show/podcast, and browse through the others to see if there are topics that might interest you. It'd all very much for a general audience, not experts (unlike some other things I link to), with good practical advice.

And enjoy World Lymphoma Day today (or, if you're reading this later, enjoy THAT day). Have some ice cream or some other treat. Or take a walk. Or read a book. But do something that makes you happy. It's your day today.

Upcoming Events

There are a few events coming up that I thought many of you might like to know about.

The first is from the Follicular Lymphoma Foundation. It's a webinar called "Relapsed Follicular Lymphoma: Essential Insights." It's happening on Thursday, September 26, at 1:30pm Eastern Time (US and Canada). As the name suggests, the webinar will focus on relapsed FL -- the latest treatment, how to identify possible signs of relapse. And there will be a question-and-answer period, too. The speakers look fantastic -- Dr. Mitchell Smith, the Chief Medical Officer of the Foundation; Dr. Philippe Armand, head of the Lymphoma program at Dana-Farber in Boston; and Andrew MacAslan, an FL patient and advocate, who was diagnosed with FL at 25 years old. You can read more about the speakers here, and register for the webinar, too. 

As I've said before, given the nature of the disease, most of us should be aware of what happens if we relapse after treatment. We won't all need a second treatment any time soon. I'm still feeling lucky that I've gotten almost 15 years out of my first treatment. But I regularly talk to my oncologist about what happens next, if I do need treatment -- what we might try, what my goals might be, what clinical trials are available at my cancer center. So I think a webinar like this is good for everyone, and the FLF does a nice job with their webinars.

And so does the Lymphoma Research Foundation. Their next webinar that might be of interest to FL patients is called "Update on Chimeric Antigen Receptor (CAR) T-cell Therapy." You have a while for this one -- it's happening October 23 at 3:00pm Eastern Time (US and Canada). The speaker for this webinar is Dr. Jerry Abramson, who is the head of the Lymphoma program at Massachusetts General Hospital in Boston. (As someone who was born in Boston, I have to say I am really pleased to see my beloved city represented by both organizations. Go Red Sox!)

This should also be a very interesting webinar. It will cover some basics about CAR-T, when to consider taking it (and the importance of talking about it as early as possible), side effects, and follow-up care. Dr. Abramson is an expert on CAR-T. If you want to hear a little bit about what he thinks about the treatment, you can watch a short (2 minute) video here. He's excited about the possibilities.

The LRF also did a webinar last week on "Understanding Diagnostic and Biomarker Testing." I wasn't able to attend, but they should have a recording of it up soon. Check back at this link.

The LRF also has their annual in-person Educational Forum happening in New York, October 26-27. It's a major event, with lots happening. When they post the final schedule for it, I'll be sure to put up a link.

But for now, mark your calendars for the Follicular Lymphoma Foundation event. I'll definitely be tuning in for that one.

Caring for Your Heart

I used to subscribe to the Journal of the American Medical Association, and I still have access to some of the content from JAMA and  some of its specialty journals (like JAMA Oncology). 

The JAMA Oncology journal has something called the "Patient Page," with interesting information aimed at patients with cancer. I'm not sure how many patients actually see these pages, since they appear in the medical journal. Maybe there are oncologists who share the information with patients? I have no idea.

Which is too bad, because the information can be useful.

The most recent Patient Page, for example, is called "Caring for Your Heart During Cancer Treatment."

It's valuable information, getting at what cardio-oncology is -- a cardiologist to look after your heart along with the oncologist looking after your cancer. And it lists some of the heart problems that can happen while receiving cancer treatment.  Some of those problems include:

Cardiomyopathy (damage to the heart muscle)

Arrhythmias (heart beating too fast or too slow or too irregularly)

Pericardial disease (problems with the pericardium, which covers the heart)

Hypertension (high blood pressure)

Thromboembolic events (blood clots)

Myocardial ischemia (reduced blood flow to the heart)

Valvular dysfunction (problems with the valves that control blood flowing through the heart)

Vascular toxic effects (damage to blood vessels).

 Not every cancer treatment results in cardiac problems. For example, some of the elements of CHOP can cause heart issues (which is why you can only receive it once, and so many oncologists will reserve it for aggressive or transformed lymphoma). 

The Patient Page also gives some advice for how to take care of your heart before you receive treatment. Controlling high blood pressure and high cholesterol, for example, before treatment can help lower the risk of heart problems that the treatment could bring on.

I think that's a weakness of this Patient Page, though. How many of us think about controlling heart problems on the off chance that we get cancer some day?

Of course, for those of us in the Follicular Lymphoma community, that's a little different. Some us watch and wait before we get treatment, and that can give us an opportunity to improve our health (our hearts and our overall health) before we need treatment. Similarly, for those of us who might need a second or third treatment after some time, that interval also gives us the chance to improve our health. (Assuming the treatment has allowed us the ability to do those things.)

One other weakness of this Patient Page - it doesn't talk about long-term side effects that come with cancer treatment. Many patients end up with heart-related issues sometime after the treatment has been finished. As I have been saying lately, that's a survivorship issue. When the treatment is "finished," some patients feel like they have been abandoned. I would have liked to have seen at least a mention of that issue. Even if we aren't in active treatment, heart problems can come up. It's something we should all be aware of and look out for.

The larger issue here is that heart-related problems need to be paid attention to -- before, during, and after cancer treatment.

This is a good time to remind you that I am not an oncologist or a cancer researcher. I'm just a patient who reads a lot.

That means that most importantly, this is an issue that you should discuss with your oncologist, not matter where you are on that treatment time line (before, during, or after).  If a cardio-oncology team seems appropriate, it should maybe be put in lace as soon as possible after diagnosis. But at the very least, when it comes time to have discussions with your doctor about possible treatments, there needs to be a discussion about the short-term and long-term physical side effects of the treatments your doctor is recommending.

All of this is just another reminder for me of how much cancer affects our lives, even before treatment.

Take care of yourselves.

 

Lymphoma Awareness Month

Today is the first day of Lymphoma Awareness Month -- and/or Non-Hodgkin's Lymphoma Awareness Month, Lymphoma and Leukemia Awareness Month, and Blood Cancer Awareness Month, depending on who is trying to make you aware. 

But whatever you call it, September is the month that is set aside for us to be more aware of our disease.

I always have the same reaction to this month, something like "I am very aware of my lymphoma, thank you. I literally think about it every day, even after 16 years."

And then I remind myself that awareness months like this aren't meant for us as patients. They are meant for others. Perhaps making others aware of lymphoma will help them recognize possible symptoms and catch a possible diagnosis early. Lymphoma Canada does this with their "Know Your Nodes" Quiz. Try it and see how well you do, then share it with others.

Or maybe the awareness is about getting people to be advocates, raising money for research or asking elected officials to make sure cancer research is adequately funded. 

You can wear your ribbon and let others now what it means and why it's important. I always think of Lime Green as my awareness ribbon color (which is why the banner at the top of the blog is lime green, even though google keeps suggesting I use an updated design for the page). But is lime green actually "our" color? I wrote about this a few years ago for Blood-Cancer.org in a piece called "My Cancer Rainbow" (and honestly, it's one of my favorites -- it was really fun to write). 

Lymphoma Awareness Month (or whatever you want to call it) really is about making others aware. 

But at the same time, we really shouldn't ignore how important it is for us to be aware, even though we're living with it every day. In some ways, the "know your nodes" and other symptom-related stuff doesn't matter as much (although it sure matters if you've already had treatment or you're watching and waiting, which covers most of us).

Being aware also means knowing that it's OK to feel a certain way, to have certain emotions. That means talking and listening to other patients and understanding that you're not alone. 

It also means knowing what resources are available to you if and when you need help -- the kinds of survivorship support that might be at your cancer center. Social workers, dieticians, trainers, massage therapists, yoga teachers. They may be there for you -- if you're aware of them.

Awareness also means knowing what treatments are available if you ever need them, and what they might involve. That takes a little work, but it's worth it.

An anonymous reader posted a comment a few days on my post describing my latest oncology appointment. The comment said, "I am an attorney and educated clients make my job easier, not harder. Stay strong in your knowledge. They are lucky to have you as their patient." 

I'm sure they are right about attorneys, and they are right about doctors. And that's probably true of any profession -- accountants probably like clients who know at least a little something about taxes. Teachers like it when students do their homework and are interested in the subject. 

And even if it makes our doctors' jobs easier, it's more important that awareness makes our own lives easier.  There are definitely times when I wish I didn't have to think about lymphoma so much. And there are plenty of patients who stop thinking about it and just try to forget that they have the disease. And if that helps them, good for them. They should do what works for them.

But if you're reading this, you're still at a point where you want to keep thinking about it. Good for you. Stay aware.

And be sure to celebrate Lymphoma Awareness Month. (Or Lymphoma Awareness Day, which is September 15th.) Have some ice cream. And stay aware.