Evolving Treatment Landscape in Follicular Lymphoma

A quick one today:

OncLive has a short series of short videos (3 videos, the longest being a little over 2 minutes). they are part of a series called "Evolving Treatment Landscape in Relapsed/Refractory Follicular Lymphoma."  Three videos, featuring Dr. Krish Patel, Dr. Solly Chedid, and Dr. Madan Arora. Sometimes these are part of a longer series of videos, or previews for longer individual videos, so a few more may get posted soon. But for now, the three that are available are brief but informative.

The videos are short enough that I don't think I need to go through all of them. But the overall message is important.

We're in a time when there are more and more treatments available for us, especially those of us who have relapsed/refractory FL (that is, our last treatment didn't work, or has stopped working after a time). When I was first diagnosed almost 15 years ago, there were very few options available, and the general attitude was something like, "This disease gets more aggressive over time, so we can start with a treatment that will give maximum response time, like R-CHOP. Then we can expect shorter response times with each treatment, with side effects piling up as the treatments get more aggressive as well."

It's amazing what we've learned about FL in 15 years, and how treatments have changed (especially in developing non-chemotherapy treatments that are more targeted at the cancer cells). That means the overall approach has changed, too. Lots of old assumptions are gone, including 1) FL patients will only have an 8-10 year median survival, 2) that the disease will become more aggressive over time, 3) that chemo is the least aggressive approach, and 4) quality of life doesn't matter. The videos in the series make that clear. In theory, FL patients can live long lives (18-20 years is now the consensus for the median survival rate for FL patients), and with decent quality. 

I've said this before, but it's been a while, so worth repeating for those of you who are new to the blog:

A few years ago, someone in a support group said that her oncologist told her, "If we can keep a Follicular Lymphoma patient alive for 5 years, we can keep them alive for 50 years."

That was a long time ago, before CART-T and R-squared and Bi-specifics. It's an important point, and one that I remind myself of a lot: we have more and better treatments now than we ever did, and more options when we need them, especially if our disease is indolent enough to get past those first few years. Obviously, that doesn't apply to every individual patient, but it's enough to give me hope.

Stay well, everyone.

 

Talking to Other Cancer Patients and Survivors

The website Blood-Cancer.com (for which I have written in the past, before I got too busy) had a really nice couple of articles over the past few weeks. The articles featured two of its writers, Ramae and Deb, who had been chatting for a couple of years online. Each of them is a blood cancer patient/survivor. They finally got a chance to meet one another in person. They each wrote about it separately. Ramae's story is here, and Deb's is here.

The stories came at an interesting time for me. Last week, I had the chance to speak to some other lymphoma patients/survivors. 

I keep using that "patient/survivor" thing because I don't what peoples' status is. There's whole other conversation to be had about what we call ourselves. But that's kind of part of what I want to write about.

I don't think I've ever met any of you in person, face-to-face, but I did have the pleasure of Zooming with a few of you during the pandemic, and I've had some email conversations with a whole bunch of you.

And I really enjoy making those connections. Especially with other patients/survivors.

There's something kind of oddly wonderful about hearing someone else's story. Their diagnosis, their treatment, their survival. So many of the details are different. The people I talked to last week all had more aggressive cancers. They all seemed much younger. Their diagnosis had happened much more recently. 

But so many of the details were the same. And all of the feelings were, too. The fear. The surprise and disbelief. Confusion. Guilt. Just not-knowing. 

I remember a few years ago hearing a cancer survivor talk about what it was like to tell her kids about her diagnosis. It brought back so many feelings for me of telling my own kids. It was actually painful to hear her story. But at the same time, so comforting. It's a strange feeling, a kind of reverse schadenfreude. Not taking pleasure in someone else pain, but taking pleasure in sharing that pain.

I remember, too, many years ago, hugging someone I worked with, who had been dealing with breast cancer. It was a wordless hug. We both just knew what we should be saying, and we didn't have to, because we both knew. 

I'm not saying I feel that way with every cancer patient/survivor I meet. Some experiences really are just too different. I sometimes feel strange describing my experience to someone who has had an aggressive cancer, because there are things they've been through that I haven't. 

And sometimes the words we use just don't match up. I call myself a cancer patient most of the time. I'm not cured, and I still see my oncologist twice a year. For me, it's an active disease. But sometimes I call myself a survivor, because it's what people are used to hearing. I know for some people, it means that my cancer experience is over, and we don't have to talk about it. And that's OK. I call myself a survivor to make other people comfortable sometimes. 

But despite those differences, it seems like the similarities are greater, and our experience is distilled into one common thing - we've heard a doctor tell "You have cancer," and we've felt everythig that goes with it. 

I'm not recommending that you seek out other cancer patients/survivors to talk to, unless you know they are willing to share. But if they are, it can be a wonderful thing. It just feels less isolating. 

If you've never been a part of a support group, and it feels like you need to make a connection, I highly recommend them. In-person or online -- either can work.

And, of course, I'm always happy to listen if that's what you need.

 

 

Plant-Based Diets, Keto Diets, and Cancer

Here's some Lympho Bob trivia for you: 

The fourth most-read article on this blog is "Keto Diet and Lymphoma Treatment" from July 9, 2018.

(If you're curious what the most read article is, it's a kind of boring one from April 2021 in which I report on an oncologist's appointment and show you the Peace Garden at the cancer center that  go to. The top 3 all include photographs, which is something I don't usually do, but maybe I should start.)

I'm bringing this up because I want to report on an article from JAMA Oncology that looks at diet and how it affects cancer. It's not specifically about Follicular Lymphoma. It's not even reporting on original research. Instead, it looks back at a whole bunch of other studies that try to show if there is a relationship between diet and cancer. In particular, it looks at the research around two popular diets -- Keto diets and plant-based diets. I know that post about keto diets got a lot of hits, so it caught my eye. It actually came out about two months ago, but I've been waiting to write about it until I could read it carefully and think about it.

It's not surprising that this would be a popular topic. Based only on what I see in the online cancer discussion groups that I belong to, people are very interested in how the things that they eat might have an effect on their cancer -- especially whether or not their cancer can be cured through diet alone.

And we all know people who have had their lives legitimately changed by changing the food they eat. And there are plenty of people who profit off of those changes, making claims that certain diets, or even certain individual foods, will solve all kinds of problems. In my nearly 15 years of living with cancer, I've seen a whole bunch of people telling me to try certain foods, diets, and supplements -- or to avoid certain foods, diets, and supplements -- to cure my cancer. And they almost always include a statement like "They've done studies!" without telling me who "they" are or where I can find the particular studies. 

And when they do have an actual study, it's not a clinical trial, but instead something isolated in a test tube or petri dish, or tested on animals but not humans. 

The truth is, there is no solid scientific evidence that any food, or any diet, will cure your cancer after you've been diagnosed. That's one of the conclusions from the article. 

I certainly understand the desire to want to find an easy solution to a cancer diagnosis, especially a solution that allows us to do something. So much of being a cancer patient just seems to be sitting around waiting, even if we're not actually officially "watching and waiting." Taking control of at least one aspect of our lives and doing something to cure ourselves without drugs would be a wonderful thing. I remember reading Lance Armstrong's autobiography very soon after I was diagnosed. A few things are kind of burned into my memory. One is of him reading that a substance in broccoli might help control cancer, and his mom making him large heaping bowls of steamed broccoli every day. that sounded good to me. But it was ultimately chemotherapy that saved his life.

So if there are no studies that show that a keto diet or a plant-based diet will cure cancer, then is there any value in them?

Again, looking at the research that has been done, the answer is yes, there is some value.

Interestingly, that article from 2018 showed that a keto diet might help PI3K inhibitors be more effective. The keto diet cuts down on sugar, and that lack of sugar helps the inhibitor do its work. But that's very different from saying cutting down on sugar (a popular "cure" suggestion) will help. Cancer needs sugar to survive, so eliminating sugar will kill the cancer, right? But no. Unfortunately, our amazing bodies find ways to create glucose (sugar) all on their own. Our brains are very heavy users of sugar as well, and they manage to function just fine on a low-sugar diet. There are no easy answers, I'm afraid.

What the review of research found was that both keto and plant-based diets, while being almost complete opposites, both can result in some very good things that can help with cancer prevention --  weight loss, decreased inflammation, and decreased insulin levels.Again, that's a very different thing from saying it will cure cancer after it has been diagnosed.

And that's no small thing, even for those of us who have already been diagnosed with cancer. As we know, we are at a higher risk for developing secondary cancers. Following a diet that cuts that risk, and the risk of other health problems, is a very good thing. We'd all like to be around for a very long time. If we're looking for something to control, diet is a good way of doing that.

Interestingly, the review of research does compare the two diets and how well they may help to prevent cancer. The researchers come down on the side of a plant-based diet here: "Currently available data support plant-based diets as opposed to [keto diets] as part of a lifestyle associated with reduced cancer risk. In the postdiagnosis setting, there are currently no rigorously tested approaches that support the recommendation of any diet to treat cancer." Eat more fruits and vegetables and less meat and fat if your goal is to prevent cancer.

One of the problems with trying to figure out how diet affects cancer is that it's just a really hard thing to isolate. In other words, in a clinical trial, researchers can gather a group of people with a certain cancer and give them a particular treatment and test how well it worked. That's a lot harder to do with food. Most research is self-reported -- people tell the researchers what they have eaten. But because eating is something we do every day, it's very hard to convince a large group of people to be isolated for weeks or months to control what they eat. Even cancer patients have lives to live. People in clinical trials for, say, a monoclonal antibody go about their lives in between treatments. That's almost impossible to do with testing food as a treatment. As humans, we eat throughout much of the day, every day.

So one of the recommendations that the researchers make is that we do just that -- treat diet as a treatment to be tested rigorously, maybe by requiring patients to eat only food that is sent to them through a delivery service, for example.

And that's important to note. The researchers who wrote this article are not closing the door here, and saying food will never be a cancer treatment. Instead, they're saying that we need to do a better job of finding out whether or not it is. As different as they are, keto diets and plant-based diets do have benefits, and might have even more, if we can figure out how to measure them in a more rigorous way.

For now, the best advice is to continue to eat well, however you define that. A good diet won't cure us, but it can help prevent other health issues, can keep our bodies strong for when we need them to be (whether it's cancer-related or not), and maybe most importantly, can help us feel a little more in control than cancer makes us feel.

Also, I'm including a photo, because apparently that gets more readers.

Stay well.

World Lymphoma Day

I've already written something about Lymphoma Awareness Month, and why awareness is both important and difficult. But today is World Lymphoma Awareness Day, as designated by the Lymphoma Coalition. 

The Lymphoma Coalition is a group of over 80 organizations from over 50 countries whose focus is on Lymphoma patients. It's an interesting group because they focus on so many different patients from different countries with different needs. Patients in the U.S., for example, may have access to more cutting-edge clinical trials than those in some other countries. But many in the U.S. may have a successful treatment only to find their lives devastated by financial toxicity, because they are responsible themselves for the cost of the treatment. We all have different issues related to where we live, and then we also all have the same issues that come from being a Lymphoma patient -- the physical effects of having cancer, and of the side effects of treatment, on top of the emotional effects that come with a diagnosis. The Lymphoma Coalition is concerned with all of it.

And so the theme of  World Lymphoma Day every year is broad enough to cover the needs of Lymphoma patients all over the world.

This year, the theme is We Can't Wait. It gets at the urgency that we all feel as patients.

If you go to the World Lymphoma Awareness Day website, you'll see that there are two particular things that the LC thinks are urgent.

First, we can't wait to address the ways the pandemic has affected people living with Lymphoma. I don't need to remind anyone reading this that the pandemic has affected us. Many of us have "imperfect immune systems" to some extent, whether it is outright being immunocompromised, or just having our immune systems work less efficiently, or just worrying about what might happen if our immune systems are challenged by viruses we don't know much about. It's been a difficult couple of years.

Second, we can't wait any longer to track lymphoma subtypes. I don't need to remind you all about my feelings on this. It's important for each of us to understand our own sub-type (the :C says there are over 80 of them). But it's important to normalize that, too, so news articles and informational essays don't lump all of those very different lymphomas into one. 

The World Lymphoma Awareness Day website has some sharable materials, if you're on social media and want others to know more. Feel free to go there and download them.

We're halfway through our special month. I hope you've become more aware of some things, and helped others to become aware.

But more importantly, I hope you've done something nice for yourself this month. Self-care is important, and if this is our month, you have an excuse. Get a massage. Get some ice cream. Take a nap. Do something to make yourself feel good. You deserve it. If you haven't yet, you still have a couple of weeks to do it.

Enjoy your day.

 

LRF Workshops

As you may know, lately I've become a fan of workshops put on by the Lymphoma Research Foundation. I think they are especially helpful for newly diagnosed patients, but great for all of us (including those who were diagnosed almost 15 years ago, like me). And best of all, they are free and done online.

The LRF offers a bunch of different types of educational programs -- "Ask the Doctor" sessions, workshops and webinars. But there are two that I think look especially promising and helpful that I want to highlight.

The first is the LRF Virtual Midwest Lymphoma Workshop. This one will take place on Saturday, September 24, and will feature speakers from some excellent cancer hospitals in the midwestern U.S. There are some general sessions about lymphoma, CAR-T, Covid-19 -- things like that which would appeal to all of us. But for me, the big attraction is that they break out and do a dozen different sessions for specific diseases, including two separate sessions on Follicular Lymphoma -- one for newly diagnosed patients and one for relapsed/refractory patents. To me, that's a sign that these folks know what they are doing. They recognize that there are very different needs for these groups.

There's also a session on Lymphoma Survivorship -- dealing with life after treatment. The speaker is Dr. Carrie Thompson. I've head her speak on this topic before -- she's fantastic. 

The other one is kind of similar: LRF's 27th Annual North American Educational Forum on Lymphoma, October 28-30. It's similar in that there are lots of the same topics, but it's a 3 day event, so there will be even more, and in more depth. One of the things I'm looking forward to with this event is that there is a little more time to discuss research (yes, I'm still a Cancer Nerd). There's lots of focus on providing basic information, and on living with specific types of lymphoma, including FL, but there's also time to get into things like immunotherapy, biomarker research, and oral therapies. A lot of that comes in breakout sessions, meaning there is a choice of 4 or 5 different topics, so you can't go to all at once. It will require some choosing. But it will be great anyway. Lots of excellent speakers at this one, too.

I hope some of you can find time to attend one or both of these events. And if not, I encourage you to keep an eye on the LRF events page for something else that might be useful.

Why Awareness Is Hard

Many of you have probably seen the recent news about the actress Jane Fonda. This weekend, she announced that she has been diagnosed with Non-Hodgkin's Lymphoma, and has begun chemotherapy, which she will be undergoing for six months.

First of all, and most importantly, I'm sure we all wish Jane Fonda an easy time with treatment, a successful outcome, and good health. We all know how it feels to hear those words, "You have cancer." And we all know how tough it is to deal with the day-to-day anxieties that come with a diagnosis and treatment. It's just not something anyone would (or should) wish on someone else.

Now, to be a little critical. As many of you know, I have a real pet peeve with people being "diagnosed with Non-Hodgkin's Lymphoma." I've read about 25 news article that describe Jane Fonda's announcement, and most also provide some background information about NHL. It's an attempt to be helpful. But to me, it's not as helpful as it could be.

Why? Because, in some sense, there is no such thing as "Non-Hodgkin's Lymphoma." Depending on who you ask, there are anywhere from 40 to 90 different types of NHL. Some are slow-growing, like Follicular Lymphoma,  where people can go years without needing treatment. But some types are very aggressive, like Burkett's Lymphoma, where lymph nodes can double in size with 24 hours. 

And some of the articles do make this distinction. But at the same time, they also mention statistics like the survival rate for NHL. That makes no sense to me -- how can you lump in the survival rate for FL with Burkett's or another aggressive lymphoma and have it mean anything? Who is that educating? 

Part of the issue, of course, is that Jane Fonda announced her disease as NHL, rather than as a specific subtype. And that's very common -- the actor Jeff Bridges did the same thing when he was diagnosed not too long ago. I can't be critical about either one of them -- they make the choices they make in dealing with the disease. We all make our choices, often in the same way. We aren't necessarily pubic figures, but we choose who to tell and how to tell them and how much information to give. People do things in the way that makes most sense to them, and they may not be the way I would do them. That's especially true in the days right after diagnosis, when everything is so new and scary and incomplete. I can't be critical.

But the larger lesson here is, this is Lymphoma Awareness month, and it's up to us to be aware. It's easy for someone else to read an article (whether it's about Jane Fonda or just about Lymphoma in general), and come away with an incomplete picture. It's up to us as patients to be aware of our own disease, and understand it well enough to use that information to help ourselves. For some (like me), that means knowing nearly every detail of the disease and its treatments, because for me, knowledge is power. But for others, that might mean knowing as little as possible, because all of that detail just creates more stress. Better to trust the oncologist to make the right decisions. And that's fine too. We make those decisions for ourselves.

But it also means that, for those of us who can, we pass along our knowledge and educate others -- we make others aware. 

From what I've read in her announcement, she seems very optimistic, and is not planning on letting the disease or her treatments keep her from doing the things that she finds important. That's another great lesson from all of this. Live your life.

Awareness is hard these days because there are so many sources of information, all competing for our attention. Some are great and helpful; some are horrible; many are incomplete. Being aware is a complex thing -- it's intellectual, but emotional, and social. Do what you can.

Lymphoma Awareness Month

It's September, and that means it's Lymphoma Awareness Month!

Hurray!

If you've been reading for a while, you now I have mixed feelings about this month. On the one hand, I am very much aware of Lymphoma -- I've been living with it for almost 15 years. I don't need a reminder tat the end of every summer.

On the other hand, cancer awareness months in general are not really for the people who have that cancer. It's more important that others become aware of them. And that's true for a couple of reasons. 

First, people need to be aware of cancers because it might help them avoid those cancers. I site like Know Your Nodes from Lymphoma Canada can help people understand what their lymph nodes are and what they are supposed to do. And that means they might know their nodes well enough to know when there is a problem. That knowledge may help them catch a cancer early enough to treat it.

Second, people need to be aware of cancers because it may help with raising money for research for certain cancers. In the U.S., there's no doubt that the cancer that people are most "aware" of is breast cancer, and people and businesses donate lots of money to help breast cancer patients and fund research. Whatever you feel about pink ribbons (and cancer patients of all kinds have some very strong feelings about them), we all know what they mean. That kind of awareness is very effective.

There's a third reason to want to raise awareness. It can help as patients understand that we're not alone.

I was in a meeting yesterday with some other cancer patients about a project we might all be working on in the future. It's always interesting to talk to other cancer patients. We have so many common experiences. We shared some information about our own cancers, and how people often misunderstand them. We talked about the stupid things people have said to us that were hurtful, and that people didn't realize were so hurtful. We talked about the kinds of things that cancer patients need. And even though we had four different cancers -- all very different cancers -- we realized how much we have in common. There's something about cancer that's just different from other diseases. 

So maybe that is the value of awareness months -- it gives us a chance to share with one another. There's great value in knowing that others have been through the same thing you have been through. The details might be a little different. But the experience is the same.

Maybe that's the best way to "celebrate" this month. Find a way to connect with other patients, Consider attending a workshop or program from a group like The Lymphoma Research Foundation. Join a support group, in person or online. Find a story about Lymphoma and comment on it and ask questions. It's not so much about becoming aware as it is about sharing that awareness.

I hope this is a good month for you. Maybe it gives you an opportunity to stop and reflect, and think more about where you are right now. And if that's hard, that's OK. We all have periods in our lives as cancer patients when we just can't think any more about being a patient. Hopefully, those moments pass, and we find some peace.

Happy Lymphoma Awareness Month.