Tazemetostat Trial Pulled

 Yesterday (February 4) was World Cancer Day. It's a day to encourage research, prevention, and awareness. The link will give you more information about some of the events that took place around the world yesterday, and some that will continue to take place. I had planned to post something about it, but I've been so busy lately that I never got the chance. I had forgotten all about the day until I saw a notice from the Follicular Lymphoma Foundation last night.

It wouldn't have been much of a post anyway. I mostly would have wished you a good day and encouraged you to eat some ice cream. So I hope it really was a good day for everyone.

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Instead, I want to comment on a news item that I saw a couple of days ago.

It's a post from a pharma investing site called "Ipsen’s Tazemetostat Trial in Tough Lymphoma Group Withdrawn: What Investors Should Know." I've written recently about my feelings about investment and finance with regards to my disease. This is an example of the kind of different perspective that a financial site brings over a medical site. 

It reports on a clinical trial involving Tazemetostat that was withdrawn -- stopped before it was really started.

Tazemetostat is an EZH2 Inhibitor that was given accelerated approval by the FDA in 2020. EZH2 is short for "Enhancer of Zeste Homolog 2," an enzyme that is controlled by the EZH2 gene. The job of EZH2 is to keep tumors from growing, so when it's not doing its job, it needs to be inhibited -- stopped by Tazemetostat. The EZH2 abnormality involves about 20% of FL patients, though it can also be effective on patients that don't have that known mutation. 

But "accelerated approval" really means "approval for now." It is usually given based on data from a smaller trial, and must then go through a confirmatory trial -- a larger trial, with more patients, that can show the same results as the small trial. 

The official web page for Tazemetostat says that the confirmatory trial has not yet been completed.  

The clinical trial that was stopped was called "NCT06068881: A Study to Assess Efficacy and Safety of Oral Tazemetostat in Adult Participants With Relapsed/​Refractory Follicular Lymphoma That Does Not Have an "EZH2 Gain-of-function" Genetic Mutation (Mandolin)."

This is not the confirmatory trial. The title is clear that it is meant to study patients who do not have the EZH2 mutation and who have had previous treatment.

What I find so interesting is that there is so little information about this. And that's true of pretty much every failed clinical trial. It is very rare that a researcher or a company will be brave enough to discuss their failures, which is too bad, because we learn so much from failure. (I'm sure the researchers learned a lot -- they just aren't sharing it with us.)

And failure is certainly common. Of all of the potential cancer treatments that start the process of getting approval (lab tests, then animal tests, them stage 1, stage 2, and stage 3 clinical trials on people), less than 10% ultimately get approved. 

As the article says, there was no announcement about this, just some changes to the official clinical trial page that indicated it had been stopped. Most clearly, there is a red box that says "Withdrawn" where there would normally be a green one that says "Recruiting." It also says "Never Started."

There are many reasons why this could have been the case. It's possible that some issues with Tazemetostat have come up that we don't know about yet. I'm not saying that's true, just that it's a reason -- but it does seem unlikely, since the trial was supposed to have started last September. It's also possible that funding was pulled and there was just not enough money to complete the trial in the way they wanted. It's also possible that they just had trouble getting participants (there is no information about locations for the study) -- with so many other exciting possible treatments, maybe there just weren't enough folks for this one. 

My big point here is that this is an example of how much we don't know as patients. There is so much to be excited about, especially around ASH and ASCO, as early research gets discussed. And much of that just never finds success. No one has to tell us about failures, even though I wish they would. 

The other pint is, sometimes those folks who look at this from a financial perspective can give us something good. I can imagine someone who is invested in the company that makes Tazemetostat, looking a couple of times a week at the clinical trials site, trying to get some insight as to whether it's a good investment. their financial incentive makes it worth talking about, even if someone with a medical interest doesn't pay any attention to it.

Perhas we'll get some updated information about Tazemetostat's confirmatory trial soon. In the meantime, the good news is, we have lots of options, and lots of reasons to be hopeful, even when the failures are invisible (or perhaps because they are invisible). 

Mental Health Awareness Day

Today is World Mental Health Day. 

I found out about it because a notice popped up on my computer. The notice featured a green ribbon, which is the color for mental health awareness.

Of course, Lymphoma awareness uses a lime green ribbon. But the mental health ribbon looked kind of lime-like on my computer, so I had to look it up and make sure we weren't sharing the same ribbon color. These things are important. (Not really.) 

But when I saw that the two ribbons might be the same color, it seemed very appropriate to me, particularly for Follicular Lymphoma. As I have said for a long time, for many FL patients, the symptoms and side effects of the disease are not physical, but emotional, mental, and spiritual. Lots of us were asymptomatic at diagnosis, and maybe stayed that way for a long time. For me, it was two years of watching and waiting.

But even with no or few physical symptoms, there are plenty of mental ones during that watch and wait period.  (The Follicular Lymphoma Foundation just did a webinar on Watching and Waiting, and of course, issues related to mental health were a major part of of the discussion.) 

And there are plenty of other times during our lives as FL patients when mental health issues are important. Certainly at diagnosis. It's such a surprise for many of us, especially when we're asymptomatic. I've spoken with so many FL patients who say they were in the best shape of their lives when they were diagnosed -- again, myself included. That shock takes some time and effort to deal with. Even those of us who suspected that there was an issue still have the shock of having it conformed. "You have cancer" might be the scariest words in the world, despite all of the advances in cancer research in the last 20 years. 

And then comes treatment, and all of the mental health issues that come with it. Uncertainty over whether it will work, or whether there might have been a better choice. Fear of physical side effects -- still a huge concern for so many patients. And the mental health issues that come with being physically weakened by treatment, and having to worry about finances and every day life.

And then, post-treatment. the fear of recurrence. Even that one is different for us as FL patients. We've been told since diagnosis that the disease is incurable, and chances are good that it will return even after successful treatment. Dealing with that possible return has its own special mental health challenges.

And then, there's the mental health challenge that I think doesn't get talked about enough -- guilt. There's the survivor's guilt of going through treatment. There's the guilt that comes from being in an online group and realizing that others have had it much rougher than you have, and wondering if yu have anything to tell them that's helpful.

I'm not listing all of these mental health challenges because it's in any way fun. 

I'm listing them because I've been through each of them myself.I think there is something very special about reading or hearing about someone else's problems and realizing that you are not alone in having that problem. If, for example, you feel some kind of guilt related to your FL, know that you're not the only one. There's some comfort in that.

Which is ultimately what "awareness" days are about. They're about a collective understanding of something, and hopefully, a collective resolve to do something about it.

The FL Community Podcast's most recent episode is on mental health issues. It's worth listening to; you'll get an even greater sense that you're not alone in feeling what you're feeling.

And remember that if having Follicular Lymphoma gets a little overwhelming sometimes, that's OK. There are places online to have conversations with other FL patients and to get some reassurance. (And I'm always happy to listen, and to offer advice if I'm asked for it. I respond to every email that I receive.) And if talking it through isn't working, talk to your oncologist's office for advice on mental health professionals that might be affiliated with your cancer center. It's ok to seek professional help if that's what you need. 

I hope everyone has a great day today. Do something nice for yourself. 

 

Happy Lymphoma Awareness Month!

September is Lymphoma awareness month. 

It's Blood Cancer Awareness month, so it's also Leukemia and Myeloma Awareness Month, too. But I think most of us are concerned with Lymphoma, so we'll stick with that.

I always struggle with the idea of "awareness" at this time of year. Like most of you, I'm very aware of Lymphoma -- my own, and of the disease in general. But this month isn't really for us. It's about helping others be more aware of it.

Part of that is encouraging others to be aware of their own bodies. That's a big part of cancer detection -- knowing when something is wrong and then getting it checked out. Lymphoma Canada has a "Know Your Nodes" quiz that's very informative. Take it yourself and encourage others to take it, too.

And if you're comfortable, share your story. You can do that with the people you know, or share it on social media, if that's something you take part in. Or you can share it through the Follicular Lymphoma Foundation's website. 

I think that's very important. There was a time, not too long ago, when people wouldn't even say the word "cancer." It made cancer seem like a shameful thing. That led to all kinds of problems -- people not going to the doctor even if they suspected something was wrong. Isolation after diagnosis and during treatment -- exactly the time when patients needed others. And then the weird gilt that so many of us feel. Silence isn't good, at least in general. But as I said, share your story if you're comfortable doing so. There's no sense in making yourself feel worse by doing something you don't want to do.

And, of course, continue to educate yourself. Learn all you can about the disease. Not everyone wants to do this, and I understand that, too. I had an oncologist who told me that some patients didn't ever want to hear anything about the disease -- just did everything the doctor said. I get that, too. I had a loved one with cancer (not a blood cancer) who just couldn't stand the idea of doing any kind of research, for lots of reasons. But if you're here reading this, you're probably someone who likes to be informed. So keep that up -- keep finding good sources of information about FL and learning what you can. I'm always happy to share what I know on this blog, and to help people be informed, but remember that I'm not a doctor, and the best source of information is your own oncologist.

Still, there's much that we can teach one another, so I always recommend listening to other patients who can provide good information. 

I recommend The FL Community Podcast, which I wrote about last month. Their latest episode is available now. The hosts focus on Managing Treatment Side Effects in this episode, discussing common FL treatments and the typical side effects that come along with each. Nicky, one of the hosts, is a clinical nutritionist, specializing in oncology patients, so she offers some tips on eating well to manage particular side effects. This is a great example of what I mean about awareness -- well-informed patients telling stories and offering advice based on real experience. It's the kind of information that we often forget about when we are planning for future treatments. 

I hope everyone has a great month. Do something extra to increase your own awareness, and to share your knowledge with others. And be sure to do something to treat yourself -- a walk in a favorite place, or a meal that makes you happy, or a day off from work -- something that brings you joy. You deserve it.

Stay well. 

World Cancer Day

Today is World Cancer Day. 

The day is promoted by the Union for International Cancer Control, and was created to "raise awareness about cancer, encourage its prevention, and mobilize action to address the global cancer epidemic."

This year's theme is "United by Unique." It is meant to highlight that each of us has a different experience with cancer, but we also share some common feelings, experiences, and goals. We are encouraged to tell our stories. I am a big believer in this -- when we tell our stories, and listen to one another, we really see just how unique each of us is, but we also see just how much we share at the same time. 

So I join the UICC in encouraging you to find ways to share your story. Share with individual you know, with people who ask questions. Share it online, in support groups with other patients. Share it on the World Cancer Day website. Share it here.

The more we hear about others' experiences, the more we learn, and the less alone we feel. 

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Now, I have another personal request of you. Educate yourself.

This seems like as good a day as any to share an article and make the request.

Last week, the Journal of the American Medical Association published an article called "Understanding of Clinical Trials Among Patients With Cancer and Their Relatives." The article described the results of a survey of 578 cancer patients and 382 of their relatives, asking about their knowledge of clinical trials. 

About 18% of the survey takers had already participated in a clinical trial, and about 44% said they were willing to participate in one. Those who called themselves knowledgeable about trials were much more likely to participate than those who were not knowledgeable. Reasons for participating included potential health benefits and access to new treatments. Reasons for being reluctant included potential side effects, feeling like a “test subject,” and the risk of "getting a placebo." 

I understand that last one, because I had that discussion with my own mom when she was being treated for cancer, and she had this concern. Too many people think the word "placebo" means "sugar pill." In other words, they believe incorrectly that in a clinical trial, half of the patients get the new treatment being tested, and half get a "fake" treatment. That is not how a cancer trial works, of course -- no researchers would be allowed to (or would want to) keep treatment from a patient. In a double blind trial, where two treatments are being compared (and not every trial is set up this way), the new treatment is given to half of patients, and the other half received the "standard of care" -- the treatment that the would have received anyway if they didn't participate in the trial.

That "placebo" language is loaded. It might be accurate, but it has too many negative meanings for too many patients. And the people who use it should know better than t use it, but that isn't always the case. A couple of years ago, I did some work advising a pharmaceutical company about the patient materials they were writing. One of the documents was about a clinical trial they were conducting, and they kept using the word "placebo." I advised them to change that to "standard of care." It's a little more accurate and a lot less negative for a cancer patient to hear. Using it would only keep some potential trial participants from being a part of it.

Clinical trials are much too important to all of us to have a single word keep people away from them. They may help the individuals who participate in them, but they help all of us by moving treatments forward so they can eventually be approved. (Or they can be shown to not be effective, and  that's just as valuable.)

But all of that requires some education. We need to understand how a trial works, what it includes, and what it doesn't include. And that takes some effort.

So on this World Cancer Day, tell your story. But also make a vow to learn as much as you can about your disease. That bit of education might now just help yourself - it might help all of us.

Also, on this World Cancer Day, do something to treat yourself. I'm going to have a big bowl of ice cream We've all earned it.

Talking to Other FL Patients

I had the chance to talk with some other Follicular Lymphoma patients today. I won't get into details of the event, to protect everyone's privacy. But we had a chance to talk about circumstances and experience and give our opinion on some relevant things.

Two things that I came away with after the meeting.

First, I always feel a little glow when I'm in a situation like this. It's strange -- as much as I hate to revisit some of the worst parts of my cancer experience, it also feels good to hear that someone else has felt or experienced the same thing. Cancer can be a lonely experience, and there's a kind of spiritual connection between people who have heard those words, "You have cancer." I wish there were other ways to feel that connection with the nice people I spoke with today, but the connection is there anyway.

At the same time, it's also hard to not feel something else -- guilt or jealousy, I suppose, depending on the circumstances. One of the people I talked to has been through a couple of rounds of aggressive treatment and is still feeling the effects. Another has been watching and waiting for several years, and senses that treatment might be necessary very soon. No FL situation is good, though it's hard not to compare your own circumstances with someone else's and feel good or bad about it.

I think guilt is a very real emotion for a lot of us. I've written about this before, and I think it happens even more these days as there are more places for us to connect with other patients online and compare our experiences. Some folks really do have a tough time. I've been lucky, I know, to have had a pretty stable disease after all these years. It's not the path that was presented to me when I was first diagnosed all those years ago. Back then, I was told to expect to have multiple treatments, and to have the disease come back sooner and more aggressively than before. It hasn't.

And I do feel some guilt about that every now and then. Not so much because of what my experience is. More because I am sometimes considered to be a representative of the larger FL community. I'm always listening, and I have a good sense of what other FL patients have gone through and are feeling now. But sometimes when I talk to another patient who has been through a lot more than me, I become to same fool that doesn't know what to say to someone with cancer, and I say the wrong thing. I didn't today, than goodness. But it happens. With a disease that presents itself in such a wide variety of ways, it's impossible to find someone whose experience is the exact same as ours. There's always someone worse off, and always someone better off.

And so -- guilt or jealousy. 

I hope you're not feeling that way yourselves, but if you are, know you aren't alone. (There -- that good feeling of connecting with other patients with FL.)

So it's been an emotional day. Believe it or not, as I feel guilt for having it better than some, I am actually leaving soon to head to a shelter for the homeless to cook dinner for 100 people. My wife has been doing it for about 12 years, and I've joined her for the last year or so. Another reminder that I am fortunate. But I also get to hear how much they love my macaroni and cheese, which is always a hit. 

I wasn't going to write about this, but it's Lymphoma Awareness Month, and the Lymphoma Coalition wants us to talk about how we're feeling. So now you know what's on my mind.

Have a great day, everyone. Stay well.

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.

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.

World Cancer Day

Today is World Cancer Day, an event sponsored by the Union for International Cancer Control. In case you are wondering what "cancer control" is, here is how the UICC defines it:

Cancer control aims to reduce the incidence, morbidity and mortality of cancer and to improve the quality of life of cancer patients in a defined population, through the systematic implementation of evidence-based interventions for prevention, early detection, diagnosis, treatment, and palliative care.

 In other words, their aim is to support cancer patients throughout the cancer experience, from preventing it from happening to making them more comfortable when they do have it. 

And so Word Cancer Day is meant as a day of awareness. As I have said in the past, I'm really not in need of awareness -- I am made of aware of cancer literally every day of my life. But cancer awareness is about making others aware, and World Cancer Day is not different from mother awareness campaigns. Making others aware means helping them prevent it, detect it, and support funding for research to get rid of it. All of that matters -- those of us who have been diagnosed know that all too well.

The theme for this year -- actually for the last three years -- has been "Close the Care Gap." The UICC wants to highlight the disparities in cancer. Not everyone is able to get screened, or diagnosed, or treated in an equal way. So over three years, they have highlighted the problem, the ways that action can be taken, and now this year,  they encourage is all to "challenge those in power." Together, we can demand that leaders prioritize cancer and its eradication.

It's a great goal, and anyone who has been unable to get what they need really understands what this theme is all about. In the United States, cancer care is often a problem because of our healthcare system, which certainly creates disparities. I'm guessing many of you have had the experience of not being able to get something you wanted or needed. But that's not just a problem in the United States. Health systems in other countries need to prioritize care, meaning some treatments aren't available to some patients. And in still other countries, some treatments that have been approved in the US or the EU are not available to patients.

So this year's World Cancer Day is about working to make those differences go away. Doing so can be as simple as clicking on the "Call to Action" link on the World Cancer Day website. Or maybe there's more you want to do. A group like the Leukemia and Lymphoma Society would welcome your help in getting our leaders to pay more attention to the needs of cancer patients.

So while World Cancer Day only lasts for one day, the need keeps on going. And there are are lots of opportunities to  help.

Of course, lots of cancer patients don't ave the energy or the resources to do what they'd like, and that's OK, too. We do what we can.

But for those of you who can, please do consider spreading awareness and getting the message out. It can only help you.

 

Thanks a Million!

I have some very cool news to share with you all.

The Lympho Bob blog has reached 1 million total page views!

I didn't catch the exact moment that it happened, but this was the page view counter that showed it to me:

 

So, a great big thank you to all of you have read the blog. An especially big thank you to those of you who have been reading for years.

I've told the story of this blog before, but I'll tell it again. I started the blog very soon after I was diagnosed. It was a way to tell family and friends what was happening with my diagnosis, any testing, and any possible treatment. I know from experience how people react when someone else has cancer -- they want to know what's happening, but they don't want to call and ask and feel like they are being a bother. I wanted people to know what was happening with me, so I tried to make it easy. They could just google "Lympho Bob" and read all they wanted, and maybe leave a comment.

And people did leave comments. And they meant a lot in those early days. As I'm sure many of you know, even a little acknowledgement of what you are going through can mean a lot. 

I also used the blog to let people know how I was feeling every day. Most days, that meant telling people I felt good. So if you're wondering why I have a picture of the singer James Brown in my profile, that's why -- his song "I Got You" has the famous line, "I feel good."

Over time, because I was watching and waiting, I kind of ran out of things to write about, regarding my own cancer. My oncologist appointments were less frequent and I had much less news to share. The blog became a kind of gathering place for some family members, and for a while I wrote about a lot more non-cancer topics. And then came Facebook. As a family member told me back then, Facebook gave everyone a new place to gather online, so they stopped coming to my blog.

No problem. At that time, I was reading and writing more about Follicular Lymphoma research. And pretty soon, I started to get comments from people I had never met. And that was really cool. And then at some point, I got a comment from someone overseas. And that was even cooler.

And all of this time, I didn't really know exactly how many people were actually reading the blog. At some point, Google (which owns Blogger, my hosting platform) added a counter and some widgets, and I was able to see just how many people were actually reading the blog. And that was very, very cool.

So where am I now with the blog? Let me share a few numbers.

• I have readers from at least 82 countries, from Argentina to Yemen and many places in between. Blogger doesn't tell me anything about who exactly is reading an individual post, but it does tell me things like how many readers I had from each country for the last week, and which browser they used. So I kind of kept a running list for a while to come up with the 82 different countries. It's fun to look at.
• This post is the 1738th that I have published. I try to post once or twice a week. Once per week is more likely these days, with my schedule.
• This is not the 1738th post I have written, however. I have about 300 more drafts in my folder on Blogger that I started but never published, and probably another 500 that I didn't bother to save. That happens a lot. I'll find something online that seems really interesting and I'll save a draft with a link, and then I'll go back and read it and find that it wasn't all that interesting anymore and I'll never write or publish the post. Other times, I'll find an article in a medical journal, usually something with a lot of science or statistics, that will seem really important. But then as I'm writing, there will be parts of it that I just don't understand, and even with some research, I can't understand it well enough to explain it to you. If I can't explain it, I don't publish it. Like I said, that happens a lot. 
• I probably spend anywhere from 1 to 4 hours per post, between searching for ideas, watching videos, writing things up, researching any information I need, and editing. Some days I just don't have the time, but if I'm getting close to a week between posts, I'll find the inspiration to write something.
  

A lot of the blog has stayed the same since I started it. I resist some "best practices" -- the advice that blog writers get for how to be up-to-date. I am very aware of that advice, but for the most part, I don't make the changes that are recommended. The layout has stayed the same the whole time, even though Blogger offers lots of choices for a more modern look. The banner at the top is still lime green, the color of lymphoma awareness ribbons. I don't use a lot of images, because I have seen some blogs that use them for no real purpose. If it adds something to a post, I'll include a photo. They would help the blog become more visible to search engines, but they also slow things down for a lot of readers. I like that the look of the blog has stayed the same all these years -- simple, with a focus on the words. If you go away for a while and then come back, you know you're in the right place.

I've never had ads in the blog. When I first started writing, internet ads were kind of crude. By that I mean, if you searched for shoes, you'd get an ad about shoes. So 15 years ago, when I searched for information about cancer, I'd get ads for life insurance and funeral homes. I just didn't want those things on my blog, and if I added advertisements, that's what they would have been. Ads are much more sophisticated now, and use a whole lot of information to tailor advertisements to each individual. But I'd still want more control over which ads were shown on the blog. I could make a little money with ads, but to me, it's just not worth it. I'm lucky to have a good job that I love. I can live without the ad revenue.

I also have never collected personal information from readers. I don't have an email list, and I don't use any cookies (though Blogger might use some cookies that I don't have any control over). If you don't leave me a comment or send me an email, I have no idea who you are. I like it that way. I'm always happy to answer an email, whether it's someone asking for advice, or for help understanding something, or just saying hello and thank you. (In real life, I'm a teacher. I'm always happy to help another patient.) But I also know that we all handle our cancer in the way that makes most sense to us. For some, it's being very public. For others, it's being more private. So if you like to read the blog and leave it at that, then that's great. Use it in whatever way that makes most sense for you. I'll never demand to know who you are.

There are days when it's hard to write, and sometimes long stretches when I can't find much to say. But it seems like whenever that happens, I'll get a comment or an email that says something nice and keeps me going. Keep doing that if you are so inclined. It's all the payment I need.

So whether you've only read a handful of posts, or you've read all 1738 of them, thank you so much for reading. As long as there's someone reading, I'll keep writing.

Stay well.

Blood Cancer Awareness Month

I know I'm a week late, but I want to acknowledge that this is Blood Cancer Awareness Month.

I say the same thing every year, but I'll say it again -- I don't really need to be made aware of my cancer, thanks very much.

But of course, awareness campaigns aren't about patients as much as about everyone else, and making others aware of a disease. I certainly encourage you to do just that.

How to do that? Well, there are some really easy things to do, like posting on your Facebook page or changing your profile picture to something appropriate, like a picture of an awareness ribbon. (speaking of awareness ribbons, Blood-cancer.com was kind enough to recently re-post a piece I wrote for them 5 years ago, "My Cancer Rainbow.")

Or maybe you'd rather not be so public about your diagnosis. I understand -- all deal with our disease in the way that makes most sense. But if you've shared it with just a small circle of people, then remind them that it's important to stay healthy, eat well, get some exercise, do some self-checks for cancer, and go to the doctor regularly. That's plenty of awareness.

And if you're looking for some other ideas, there are plenty more out there.

The Lymphoma Research Foundation is in the middle of their annual Light It Red campaign.

The Leukemia and Lymphoma Society is highlighting their personalized support for patients.

The World Lymphoma Coalition, a group made up of Lymphoma organizations around the world, celebrates World Lymphoma Day on September 15. Their theme this year is "We Can't Wait -- To Focus On Our Feelings." They want to highlight some of the psychological and emotional issues that come with a diagnosis. I am in full support of that kind of awareness.

One more thing -- Blood-Cancer.com (I mentioned above that I write for them) is having a give away to celebrate the month. Sign up using your email address (and getting on their email list), and you could win a Kindle Fire HD 10 with Alexa (64GB). Click here for more details, so you know what you're getting into. (Only open to United States residents.)

At the very least, celebrate your awareness by being good to yourself. Read a good book. Take a nap. Go get some ice cream. Celebrate yourself -- you're doing a great job.

ASCO: Uncertainty and Coping

 More research from ASCO:

"Uncertainty and coping in patients with newly diagnosed indolent non-Hodgkin’s lymphoma (iNHL)."

The title of this presentation gives you the basics of what it's about, and it's pretty likely to make you say something like "Do you really thinkmI needed an ASCO presentation to tell me that?" Basically, what it says is that patients with indolent lymphomas (like Follicular Lymphoma) are anxious and uncertain because they have a slow-growing but usually incurable cancer, and need some help with developing coping strategies.

Yes, we do know that this is true.

One of the nice things about being able to register for ASCO as a patient advocate is that I get access to some additional materials besides the abstract/summary. So while it all seems pretty obvious -- yes, we are anxious -- the additional materials help round things out a little bit.

So here's the rundown:

The research focused on newly-diagnosed patients with indolent NHL. They collected PROs (Patient-Reported Outcomes), with patients giving their own thoughts about how they were feeling. They used several different surveys to do this, including Functional Assessment of Cancer Therapy to measure Quality of Life; the Hospital Anxiety and Depression Scale to measure psychological symptoms; the Prognostic Awareness Scale to measure how well they understood their prognosis; and the Brief COPE to measure their ability to cope with the diagnosis.

[Import note before we move on -- the links above will take you to either descriptions of the surveys, or the surveys themselves. If you are thinking about taking one of the surveys yourself, think carefully before you do. They are meant to be reviewed and discussed with a mental health professional. It might not be a good idea for some of us to start looking at issues on our own that we can't explore without some help. As you know if you've been reading for a while, I'm a huge believer in taking care of our mental health -- that's why this presentation was so attractive to me. But I think it's better to deal with these issues with some help.]

Then they looked at the ways the patients tried to cope with their diagnosis. They categorized the strategies as one of two approaches. The first is called "approach-oriented," including doing things like active coping, using emotional support, positive reframing, and accepting the diagnosis. The second approach is "avoidant" -- disengaging, denying, and blaming themselves for the diagnosis. Essentially, they think it's good to deal with the diagnosis, and bad to avoid dealing with it. They're probably right about that, though I think we all deal with it in the way that makes the most sense. I know people who coped very well by disengaging, for example. 

The study looked at 48 patients; about one third of them had FL (the rest had CLL, another indolent blood cancer). At the time the the patients entered the study (within three months of being diagnosed), they were given the surveys. The results of the surveys:

31.2% were found to have symptoms of anxiety and depression.

45.8% said the uncertainty about their prognosis was "the most stressful part of being a patient."

31.2% said they had "difficulty letting go of thoughts about their prognosis."

47.9% reporting that they thought a cure was at least "somewhat" likely (even though they were told it was an incurabe cancer).

None of that is very surprising to me. One thing that does surprise me, though, is that the researchers seem concerned that almost half of the patients think a cure is "somewhat likely." And I guess that is concerning, especially with patients that are less then 3 months out from a diagnosis. But that's a tricky thing. I think of myself as being just about as informed as a Follicular Lymphoma patient can possibly be, and I do think that a cure is somewhat likely to happen in my lifetime. I also have 15 years of experience with living with this disease, and the knowledge that I probably have a fairly slow-growing version of it, and as a result, I expect my "lifetime" to be pretty close to "normal." That gives researchers some time to work on this.

I'm less certain that, at 3 months, I would have felt the same way. But I also think that Hope is being undervalued here. It's an awfully hard thing to attach a number to, and numbers matter in something like an ASCO presentation. But Hope -- in this case, the uninformed or under-informed belief that everything will work out OK -- is something that I would consider an active, positive coping strategy. I'm all in favor of whatever helps a newly-diagnosed cancer patient get out of bed and face the day. (And I'm happy to talk more about that in the comments if anyone wants to.) 

As for what happened after the patients started using coping strategies:

56.3% used acceptance.

47.9% used denial.

47.9% used emotional support.

The patients who used multiple approach-oriented strategies (the active ones) reported fewer symptoms of anxiety and depression, and reported a higher Quality of Life. This makes perfect sense to me. An active approach gives a patient a feeling of control. That's why I've been writing the blog for 15 years. It's always made me feel like I'm doing something, especially at a time when I could do nothing but watch and wait. I don't think an avoidance strategy would work for me. Though, as I said, I've known and heard about patients who have used it very effectively. I think for someone with an incurable cancer, the ability to not think about it every day could absolutely lead to a better Quality of Life. Indeed, the study found that patients who use avoidance strategies had higher symptoms of anxiety, but not of depression, and did not have a lower Quality of Life. They are living their lives despite the cancer. (And maybe to spite the cancer.)

The researchers conclusion isn't to recommend any particular strategy for coping. Instead, they suggest that interventions are necessary. And that seems right to me, too. And strategy can work, even denial or avoidance. As long as the avoidance doesn't do any harm, then it's OK. And for me, the harm would be avoiding treatment. I've seen that up close, with people that I love denying that there was a problem until it was too late to do anything about it. But getting a diagnosis, and then putting it out of your head until a problem pops up? That's fine with me.

It makes me think about a patient that my oncologist told me about very soon after I was diagnosed. He said this patient had been diagnosed with FL about 30 years before. He retired and moved to the Bahamas, and once a year, would come back to the New York City area to see his oncologist, and then see a couple of Broadway musicals, and then head back to where it was warm and sunny for another year. 

I have to be honest -- that sounds a whole lot nicer than being hunched over a keyboard all winter, reading medical journals and writing bad news to you about PI3K Inhibitors. 

But we all find the best ways we can to cope, and to maintain the best Quality of Life that we can.

So if it's working, keep doing what you're doing.

And if it isn't -- talk to someone who can help you figure out what might work for you. Your oncologist is a good place to start. They might know about resources that are available to you.

And remember that I'm always here and happy to listen.

Take care.

 

15 Years

Today is my 15th diagnosiversary. 

I was diagnosed with Follicular Lymphoma 15 years ago. And I began my first Rituxan treatment 13 years ago today, after 2 years of watching and waiting. 

As happens every year, I start thinking about this day about a month before it comes. I'd like to share what I've been thinking about lately, and what I've learned in my 15 years as a cancer patient.

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Something kind of remarkable happened a few weeks ago in the world of United States politics. 

I don't like to talk much about politics in this blog, because it divides us too much, especially in the last few years. And that's what made this event from a few weeks ago so remarkable. It involves two politicians, from very different sides of the political divide. I won't even give their names or link to a story about it. But it's safe to say that they believe in very, very different things, and see the world in very different ways, and both are very vocal about it.

One of them was diagnosed with cancer -- Diffuse Large B Cell Lymphoma, FL's more aggressive cousin. In the announcement about the news, he called the cancer "serious, but curable," which is probably an accurate description.

The news was greeted on sites like Twitter in some very expected ways -- good wishes from people who agreed with this politician, and some nasty words from people who disagreed.

But one politician, someone that he clashed with a lot, posted a very surprising and supportive message in Twitter:

We disagree often, but I’ll be praying for [the politician]. Cancer is a terrible disease. I watched my father die from it, and it broke my heart. It’s good [he] has hope and his form of cancer is curable with the treatment he will be starting.

The politician who was diagnosed responded: 

Thank you, [her name], for this touching message, which my youngest daughter showed me. I’m grateful for your concern and very sorry to learn that you lost your father to cancer. Wishing you happy holidays with loved ones.

 I can honestly say that the exchange made me cry.

As different as we are from one another (and we live in a world that seems to highlight those differences), cancer somehow brings us together. There are experiences, words, even tastes and smells, that we all share (if I mention the saline taste before a scan, you probably know just what I mean). We've all heard the words "You have cancer." It unites us in ways we would rather not be united in.

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All of this me think back to some of the connections I have made with people over the last 15 years because of cancer. Last week,  I got tired of my youngest child making fun of how big my email inbox is -- I don't erase any old emails. I'm a digital pack rat. So last week, I did my best and went through my 500 old emails and erased a bunch that I never should have kept in the first place.

But one thing I found was that I had dozens and dozens of emails from many of you -- readers of the blog. And I hadn't erased any of them. 

I'm sure there is a psychological reason for not erasing those emails. (And if you're a psychologist and you know what it is, keep it to yourself. I'm all for self-awareness, but not today.) I do know that one reason I saved them was because, every now and then, there are some of you that I like to check in on. I'll just start thinking of you, usually when I haven't heard from you in a while, and I'll send an email, so I need your addresses. It makes me feel better.

I don't do that for everyone, because sometimes, it just feels like I'll be invading someone's privacy if I sent an email out of the blue. And I don't want to do that. The same child of mine who thinks I save too many emails also warns me that certain behaviors are "creepy" and "cringey." Which I understand. So I avoid intruding on people's lives. Some people have successful treatment, and want to move on from thinking about cancer so much, and I can just be a reminder of their cancer. And I don't want to be that.

But it is important to me to stay connected. And I really do love getting email from readers. It validates the work that I do, obviously (over 1600 posts -- it's been a lot of hours of reading and writing). I like hearing that people like the blog -- who wouldn't? And sometimes the emails are very flattering (Someone once wrote to me, and I responded to her questions, and she wrote back again to tell me that it felt like she was talking to a celebrity. My kids made fun of me for that.) But it's more than just getting "fan mail" or something like that. Even after 15 years, it feels good to hear from someone who has been through the same experience. It's more than validating the work; it's validating the life. I'd never wish cancer on anyone, but it's nice to know you're not alone in it. 

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That's one of the great benefits of being in a support group -- knowing you're not alone. I've been thinking lately about that support group that I sometimes mention. I found it just a few days after I was diagnosed, and it was a huge help to me in those first few years. It still exists -- there's a link to it in the "Sites I Like" list. I still visit it every few days. It's changed a lot. You'd expect it to change after 15 years. Some of the same people are still on it, which is great. But there are fewer people, and fewer posts. There are a whole lot more places to go online for information than there were in 2008, and more places to go for community and connection as well, which is probably why it's less active than it used to be.

Those early days after my diagnosis were so hard, and the connections I made in that group were so important. There are folks from that group that I have stayed connected to, on Facebook and Twitter, and that I have worked with in different ways over the years, trying to support one another in helping other patients. One ran a charity that supports lymphoma patients, and who asked me to take it over from him -- I turned it down because one thing that cancer has changed about me is that I really don't want to be in charge of anything anymore. Plus I really like my current job and wouldn't want to leave it. Another started a charity that provides free vacations for cancer patients. I've tried to support that one, too. I've stayed fairly close to some people that I've never met in person, but who have been very important in my dealing with cancer.

But for all the connection and success from those early days in the support group, all those folks who are still around, there are a few people who are gone now, and whose memories stay with me. One was a young girl, about 18 or 19. She had just started her first year of college when she was diagnosed with an aggressive lymphoma. She was treated successfully, but it didn't last long, and her family's health insurance was cancelled. (This was before the Affordable Care Act, so private health insurance could be cancelled because someone had a "pre-existing condition," meaning that since they had cancer, they were too much of a risk for the insurance company.) There were months of posts from her about fundraisers so she could get a stem cell transplant -- there were people she had just met in college a few weeks before she was diagnosed, and now they were working to raise thousands of dollars to help her. Unfortunately, she wasn't able to raise enough money and she wasn't able to get the transplant. 

That was devastating. I didn't know her well, but it hurt for lots of reasons. It was a young life gone before it really started. It made clear that my health was at the whim of an insurance company. And it made me understand how important it was that the healthcare system in the U.S. be changed. (Like I said, I don't do politics here, but I'll do it when it involves the lives of cancer patients, and there is a lot of change to the healthcare system that still needs to be made.)

Another memory -- an older woman who joined the group and immediately became everyone's best friend. Another FL patient, we bonded quickly and supported one another. She used to call me "Little Bro." She'd already had a few different treatments when we met. She died fairly suddenly, not from lymphoma, but from the complications from all of the treatments that she'd had. I remember that my wife was away for the weekend, visiting her old college roommates, when I got the news. Not a lot of big lessons there, other than a harsh reminder about how fragile life is, and of how important it is to not take anyone for granted. 

Maybe that's why I save all of those emails. I want to hang on to all of you for as long as I can. The good news is, so many of you have been hanging around for a really long time.

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Two more people I've been thinking of lately. Both of them are parents of kids who went to school with my own kids when they were young.

One if them is a doctor. I knew that both he and his wife were doctors. His wife's schedule must have been more flexible than his, because I rarely saw him when it was time to pick up the kids after school. But I did see his wife, and we talked a lot. When I was diagnosed with FL, I told her about it. She wasn't really familiar with FL (she wasn't an oncologist), but it turned out that her husband was. And not only that, he ran the biopsy lab for the hematology unit at the big research hospital nearby. "He's probably the one who saw your sample and diagnosed your cancer," my doctor friend told me.

The other person I was thinking of was not a doctor. I didn't know what he did for a living. But one night, he and I were part of a group of dads that had volunteered to paint the bathrooms in the school before a big inspection. (Parents were often recruited for things like this to save money. I'm a very good house painter -- I did it during the summers all through high school.) After we finished, at about 10pm, the group of dads all shared beers in the school parking lot. We talked about our health and our failing Dad Bodies, and my diagnosis came up. He asked what treatment I had, and I told him it was Rituxan. Turned out he works as a lab technician for a pharmaceutical services company. "I mix that stuff every day," he said. "I probably mixed the bag you had for your treatment."

We live in such a weird, small world. 

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I've heard people say that being a cancer advocate is like dropping a small stone in a pool -- the water ripples outward in circles. The things we do can affect others near us, but some that are far away, too. 

What most of us don't notice is that those ripples hit the side of the pool and then come back town the place where the stone was dropped. We affect others. But those others affect us, too.

And most important -- sometimes it's hard to remember that we're all in the same pool. None of us is alone. It might seem that way sometimes, when others aren't physically near us, or when people who are near us don't seem to understand us. But what I've really learned over 15 years as a cancer patient is how many of us are in the pool, sharing the same water, bumping up against the same little ripples and big waves.

I'm thankful that all of you have been here to share this experience with me, whether you've been around for 15 years, or 15 months, or 15 minutes. You'll all a reminder of the things that connect us. I'm thankful that you keep reading, and keep writing to me in emails and comments, and keep working hard to deal with this life that we live as FL patients.

Thanks for reading. I look forward to another year with you. 

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.

 

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.

World Cancer Day

Happy World Cancer Day!

Today is considered World Cancer Day by the Union for International Cancer Control. As the name of the Day of the Organization suggest, World Cancer Day is a day to raise awareness all around the world about cancer, to increase education, and to work together to reduce the incidences of cancer everywhere.

This year's theme is "Close the Care Gap," and is meant to highlight the differences in cancer care aware the world. I'm especially sensitive to this issue. I am very aware of how lucky I have been to have the care that I have had, and I think it's a big reason why I have been able to go 12 years since my treatment. I'm also aware that not everyone is so lucky. I have had readers from over 80 countries (so my Google data tells me), and many of you have written to me with your stories. Not everyone gets the same care. I hope this campaign works -- even just a little bit -- to change that.

With that in mind, is it a little strange to wish everyone a "happy" World Cancer Day?

No, it's not strange. I've been highlighting some potentially bad news over the last few weeks -- three treatments no longer available to us. But there's plenty of good news for Follicular Lymphoma patients, too, even in just the last few days.

For example, the "Cancer Moonshot" initiative that was first created in 2016 was relaunched this week, with the aim to cut cancer deaths in the United States by half in the next 25 years. While there won't be any new money right away (which some see as a big weakness), there will be a greater priority on things like testing and prevention and early detection, and perhaps down the road, providing more funding. I'm choosing to see this as a positive development, despite some things I'd do differently (like involving patients more directly). And, thinking about "closing the care gap," I hope some of the initiatives bring prevention and care to those who haven't gotten it as easily, in the U.S. and around the world.

The other bit of big news this week has to do with CAR-T. The first CAR-T patients, who received the treatment 10 years ago, are still cancer-free. That 10 year time period has some cancer experts saying we can consider the cured. The patients had CLL, a slow-growing blood cancer that is similar in many ways to FL. That has some great implications for us. It's also more complicated than being able to say everyone who has CAR-T will be cured. That's all I'll say about it for now because I plan to write more about it in a few days.

So, yes, I think this is a happy World Cancer Day. If nothing else, it reminds us that there are things to be hopeful about, even if there is always some less happy news whenever we receive good news. 

But we're used to that, aren't we? Personally, I'll hang on to the happy news and keep my focus there.

Enjoy the day, everyone. World Cancer Day is a good excuse to treat yourself to something fun. 

Stay well. 

World Lymphoma Awareness Day

 Today is World Lymphoma Awareness Day.

The World Lymphoma Coalition, which is made up of 80 lymphoma-related organizations in over 50 countries, has chosen a theme for this year: "We Can't Wait." They are looking to highlight the ways that the Covid-19 pandemic has affected lymphoma patients around the world.

And there have certainly been many ways we have been affected. A lot of us have compromised immune systems, which make us more vulnerable to the disease. Others have tried a vaccine, but have not gotten a benefit from it, because of their "imperfect" immune systems. All of us are affected in the long-term by the slowing down of research, when hospitals and university labs were closed last year, and by research money that was shifted to pandemic-related causes.

We can't let people forget about us. We can't wait for things to get back to "normal," whatever that was, and whatever is now is.

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I almost always say the same thing on World Lymphoma Awareness Day: personally, I don't need the reminder. I'm aware of my lymphoma every day. I think about it and read about and write about. Every day.

But it's other people who need to be made aware.

Yesterday, we got the news that the comedian Norm MacDonald died. I liked his comedy. I saw one obituary that described him as a "patient" comic. He would spend a full five minutes on a story that had a goofy punchline, the kind of thing my kids would tell me when they were 8 years old. But he could also tell jokes that were incredibly caustic and biting and adult. Someone once described him to me as saying he really liked to make people "uncomfortable" with his comedy. He was unpredictable that way. that's partly why I liked listening to him. I like to laugh at uncomfortable things. It's helped me deal with cancer.

Yesterday, I heard a replay of an interview he did once, where he was critical of people (particularly celebrities) who publicized their illnesses. He thought talking about it was just a way of getting sympathy. The braver choice, he thought, was to not talk about it or burden others with it. "I might have a specific ailment," he said. "Maybe I do. You don't know. But I wouldn't talk about it."

Of course, he did a specific ailment. The obituaries and tributes mention that he died of cancer (I don't know what type). A friend of his confirmed that he had been keeping his diagnosis private for about 10 years.

Now, given that I write a lot about my own cancer, I obviously disagree with Norm MacDonald on this. I'm more of a "shout it from the roof tops" kind of person when it comes to cancer.

And let me be clear: I am not in any way criticizing Norm MacDonald for wanting to keep it to himself. I've known as many roof-top-shouters as I have people who wanted to keep their diagnoses private. And they keep things private for many, many reasons. I would never tell another cancer patient that they were somehow "doing it wrong." We all need to find the best way to deal with our diagnosis -- our own best way. Every cancer patient has had one common experience: we've heard the words "You have cancer." That's enough to unite us. What happens after that is whatever makes sense to each of us individually.

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And that's why "awareness" matters so much. I shout so Norm MacDonald, and others like him, didn't have to.

Someone has to tell the stories, because as individual as our stories are, there's always something in them that someone else -- maybe just one person -- can connect to. One small detail to make another cancer patient realize that they aren't alone in feeling a certain way.

Someone has to ride the bike or run the marathon or sell the lemonade, or whatever else gets done to raise money for research.

Someone has to share the meme, or take the quiz, or post the story on social media. 

Those of us who are able to do those things need to do them, so other people don't have to. So they can deal with things in the way that makes most sense to them, that helps and supports them in their own best way.

That's what "awareness" is really about. Not making yourself aware, but using yourself to make it easier for others, even in small ways.

As I always say, there's lots to be hopeful about in the world of lymphoma. Do what you can to let others know that, too.

 

World Cancer Day

Today, February 4, is World Cancer Day. 

I know for many of us, every day is "cancer day." But World Cancer Day is an opportunity for people around the world, dealing with many different types of cancer, to stand together (figuratively), and let others see the scope of the disease. The day is put together by the UICC, the Union for International Cancer Control, a group made up of 1200 cancer organizations in 172 countries. Truly world-wide. 

I like the theme for this year: "I Am and I Will."

The idea isn't that an "awareness" day is about being aware. It's about taking action. Ideally, the folks at UICC want us to take action in a larger sense -- doing something in our community that raises awareness and helps move toward finding cures for cancer. When we take actions locally, it all adds up to something global. There's so much misinformation about cancer of all kinds that pointing people to good sources of information, or even sharing our own story, is an important part of "awareness." We can do our part.

But to me, that "I Am and I Will" goes a little bit farther. By making others aware, we strengthen ourselves. It's so easy, as cancer patients, to feel like we have no control over our situation. It's tru that there's a lot we can't control. But there's lots that we can.

I speak from experience. Writing about Follicular Lymphoma, telling my story, learning about the disease, responding to emails from readers -- all of those things are empowering. My lymph nodes will do what they're going to do. But helping others understand the disease so they can have an informed conversation with their doctor? I can control that.

So think about ways that you can tell your story, share your knowledge, and make a difference, whether it's talking to other cancer patients, or other people who could use some help understanding what the cancer experience is about. That's what real awareness is.

Enjoy the day.

ASH: Financial Toxicity and Follicular Lymphoma

I'm back to looking at ASH abstracts after a short break to be thankful. (And thanks to all of you who commented. I've always said I would still keep up the blog even if no one else read it -- I like to write, and it gives me an excuse to keep up on what's happening with Follicular Lymphoma. But it's still pretty great to hear from other FL patients that I'm helping them.)  

As you probably know, ASH is the American Society for Hematology, and their big conference takes place every year at the beginning of December. The abstracts or summaries of the presentations get put online about a month before that, and I like to go through them and write about things that I find interesting. Not always the most important, but the ones I find interesting.

The ASH presentation that caught my eye today is called "Impact of Treatment Sequencing on Outcomes and Costs in Relapsed Follicular or Other Low Grade B-Cell Non-Hodgkin Lymphoma – Results of an Evidence-Based Budget Impact Model."It deals with an important issue for cancer patients, though they don't use the actual phrase -- financial toxicity. Just as cancer treatment has physical toxicity and side effects, it can have financial side effects, too. Too many of us already know this.

The researchers wanted to know, basically the best FL treatment sequence for the buck -- what is the most effective sequence of treatments relative to cost? What's the longest a patent can go between treatments for the least money?

To do this, they looked at data from research that has already taken place in the past. They compared treatments that are recommended by the National Comprehensive Cancer Network by looking at the number of treatment cycles that each treatment requires, the number of days a treatment was received, the duration of response (how long it keeps working), rate of side effects and associated costs (like medicine to treat nausea, for example), and total treatment costs, including drugs, medical treatment, and laboratory testing. All of that information helped them figure out how much each treatment would cost for a typical patient (one that had the typical amount of treatment for the typical amount of time for the typical cost).

They looked at all of this information for a few different scenarios. Follicular Lymphoma is considered incurable, which means patients often need multiple treatments. So, using the NCCN guidelines, they looked at typical first-line treatments (the first treatment a patient receives), consolidation treatment (sometimes given right after first-line as a way of cleaning up any left-over cancer cells), and second-line treatment (given after the first-line stops working). 

The specific first-line treatments they looked at were Bendamustine + rituximab (BR); Bendamustine + Obinutuzumab (OB); CHOP rituximab (R-CHOP); CHOP + Obinutuzumab (O-CHOP); CVP+ rituximab (R-CVP); CVP + Obinutuzumab (O-CVP); and Lenalidomide + rituximab (R-squared). [No straight Rituxan? Hmmm.]

The Consolidation treatments they looked at were Rituximab maintenance (RM); Obinutuzumab maintenance (O); and RadioImmunoTherapy (Zevalin).

The Second-Line treatments were RIT; Lenalidomide only; and Lenalidomide + Obinutuzumab (LO).

You get all that? 

They looked at the cost for each of those treatments, then added up the cost for the possible sequences. Maybe a patient first has RCHOP, consolidates with R-maintenance, then eventually needs Lenalidomide a few years later. Now create sequences with all of the possible combinations. 

I'm not going to go through every combination, but I encourage you to look at the abstract and see the tables with the information. It's pretty easy to read. 

What the researchers highlight:

The treatment sequence of first-line BR followed by Consolidation with (Zevalin) had the longest predicted duration of response (2586 days, or a little over 7 years). The cost would be $212,485. Next best was BR followed by R-maintenance, costing $233, 388 for a duration of response of 2478 days (a little under 7 years). The predicted duration of response for treatment sequences that started with O-CHOP, O-CVP and R-CHOP and then followed by Zevalin were about 1000 days (roughly 3 years) less than BR + Zevalin. 

The longest duration of response came from BR followed by Lenalidomide + Obinutuzumab, at 2778 days (about 7.7 years), but at a cost of $796,695.

Again, look at the link for more. It's pretty interesting.

[And, as I look at this again and think about you, dear readers for whom I am thankful, I know many of you live outside the U.S. and those numbers don't mean much. So here's a small gift: a link to a site that lets you convert currency.]

What I also find interesting is that a couple of treatments involving Lenalidomide had astronomical costs -- BR with second-line Lenalidomide, and R-CVP followed by Lenalidomide, each cost over $4 million for a typical patient. Lenalidomide has to be taken every day, as a pill. That adds up (especially if the price goes up.) Zevalin keeps costs down because it is given in just two doses.

My thoughts on all of this (as always, I remind you that I am not a doctor, so don't take anything I say as medical advice. Talk to your own doctor about that):

There are, as always, some warnings about research like this. It looks at published data on median or "typical" patients, so the results are going to be different for every patient. Some will get a longer response from first-line treatment, others will not respond to consolidation, etc.

But I think those "typical" responses are how insurance companies (in the U.S., or national healthcare agencies in other countries) decide on which treatments to recommend. And, in the unfortunate situation that a patient has to pay all or most of the cost of treatment, this kind of sequence analysis matters -- how many days of being free from cancer will I get for the money I pay? Better to lay less for a shorter response? Pay more for a longer response? Find some way of balancing the two? This research helps to answer those questions.

The really big take-away for me, though, is in comparing the costs of treatment to something like CAR-T. When different versions of CAR-T have been approved, there was a lot of discussion about their cost. Since each treatment is created specifically for an individual patient, the cost is pretty high -- up to $500,000. 

But if you are a patient who gets a long duration of response -- maybe even a cure -- for a half million dollars, that seems pretty good compared to, say, BR followed by Lenalidomide + Obinutuzumab, which would cost almost $300,000 more. 

And as far as financial toxicity goes, I really appreciate that the researchers considered not just the cost of the treatment itself, but of all the other things that go with it, including laboratory fees, medications to deal with side effects, doctor visits, etc. Those things matter. It would be a lot harder to calculate, but it would have been even better if they had included things like lost wages from missing work on days when fatigue was just too much.

But honestly, I'm happy with what the researchers do include here. It's an important topic, and one that doesn't get talked about nearly enough. I'm guilty of it, too -- I get excited about new treatments without thinking about how much they'll cost, and if they will be affordable.

I hope more research like this comes out, and gets a lot of attention. At least in the U.S., financial toxicity is a major issue for too many cancer patients, and awareness of the issue just might lead to something being done about it.

Invisible Illness Awareness Week

This week (October 18-24) is Invisible Disabilities Week, an awareness campaign sponsored by the Invisible Disabilities Association.

The IDA describes itself this way: "IDA is about believing. We believe you! The frequently invisible nature of illness and pain may lead to disbelief about that illness or pain by those surrounding the person who lives daily with invisible disabilities. This disbelief can lead to misunderstandings, rejection by friends, family and health care providers. It may also lead to accusations of laziness or faking an illness."

Part of the awareness campaign is to have people post about their invisible disabilities on social media, so I have seen lots of stuff on Facebook and Twitter over the last couple of days (and probably will see more during the rest of the week). I have some people who are very close to me who have invisible disabilities -- physical problems that people can't see (at least at first) but that affect their lives.

It all sounds very much to me like Follicular Lymphoma. As we all know, FL is a cancer that doesn't always show up the way other cancers do. Not all of us have traditional chemotherapy, for example, with the kind of "obvious" signs that show we have cancer, like a bald head.

I wrote a piece last year for Blood-Cancer.com called "Not Your Typical Blood Cancer Patient," where I looked at what kind of pictures show up if you do an online search for "Cancer Patient." Lots of bald heads and head scarves and very sad expressions. But not all of us look that way on the outside.

In the title for this blog entry, I'm using the term "Invisible Illness" rather than "Invisible Disability." I think it's more encompassing of out experience, though I fully support the goals of the IDA and its awareness week.

Many Follicular Lymphoma patients do indeed have invisible disabilities. Whether from symptoms of the disease, or side effects of treatment, or even side effects of the medicines that help us deal with the side effects of the treatments, our bodies have changed in ways that make it hard to do the things we used to do. Those changes aren't visible to everyone right away. And, like the IDA says, that can lead to misunderstandings, rejection, and accusations of laziness or faking. I feel for those folks.

And then for many of us, we don't have the invisible disability, but we do have an invisible illness. We don't have the bald head of chemo treatment, for example, or other signs of cancer. (A woman in one of the online FL support groups I am in recently said a friend accused her of faking her cancer because she "didn't walk like a cancer patient." I can't even begin to imagine what that means.)

Those of us with invisible illnesses like FL might not have symptoms or long-term side effects that have affected our physical abilities. But that doesn't mean we don't live with physical pain every day, in some way, that we quietly ignore or cover up so we can get on with what we need to do, and, maybe "try not to be a bother to anyone."

And we most certainly live with the emotional illnesses that come with Follicular Lymphoma, like the fear that it will come back, or get worse, or transform into something else. That fear never really goes away (even after almost 13 years, as I can unfortunately tell you). And it's even worse during a pandemic.

And the guilt. You know this if you're like me, in a weird state of being in-between -- you haven't had a clean scan in almost 13 years, but you're also living a "normal" life, working and laughing and going for walks, and not really being "sick" but not exactly being "well" either. There's some heavy guilt that comes with that, sometimes. You maybe "don't walk like a cancer patient," and you wonder why you're lucky and others aren't.

The message of Invisible Disability Week is that you are not alone. It's easy to feel like you are, especially when you think you "look like everyone else" but don't feel like they do (or like how you suspect they do).

So take this as a reminder, my dear fellow Follicular Lymphoma patients, that you are not alone. There are approximately 70,000 people in the world with a Follicular Lymphoma diagnosis. There are readers of this blog from about 80 countries. And most of all, I'm here if you want to ask a question, share some good news, learn some new stuff, or just rant about people saying you don't "walk like a cancer patient."

Enjoy the week.