Thankful

Today is Thanksgiving in the U.S. It's a day we set aside to be thankful for lots of things. I do my best to reflect on what I'm thankful for every year, because I know it's easy to take things for granted.

Of course, it's a tough year for a lot of people to feel thankful, as Covid-19 has had such a large effect on everything we've done for much of the year. Thanksgiving is no different. This is the first Thanksgiving since my wife Isabel and I were married that we won't be with extended family. We almost always travel to see one of our families; very occasionally, family travels to see us. But this year, it will just be us and our three kids. I'm thankful to have all of them here with me. 

We'll have a traditional Thanksgiving dinner, scaled down for the five of us, and for the first time, the kids will really play a part in doing the cooking. My wife and I spent about six months as "empty nesters," with the kids all away at school or on their own. I was thankful for that. We've sent another eight months with a full house. And we'll probably end up with an empty nest again in a couple on months, as the kids all try to get some normalcy back in their lives. We'll be thankful for that, too. If nothing else, cancer teaches us how to appreciate whatever it is we have in front of us. 

Isabel and I went for a walk this morning, as we have been doing every morning since the spring. It was very rainy, but we did our full walk anyway. It was very quiet, too. No one else out, probably sleeping in a little because of the holiday, and the rain. We dodges puddles. Usually we dodge neighbors. Our neighborhood is very walkable, and we usually encounter a dozen or more people as we do our walks. We always say good morning, and there's always a little contest where we try to get out of one another's way, crossing the street or taking a few steps up someone's walkway, making sure we stay six feet from one another. I live in a neighborhood where people take the pandemic seriously, and treat one another with respect and kindness.  I am very thankful for that, too. Sometimes it seems like that's a rare thing.

And on our walk, we talked about family, and how much we want to see people we love, and how hopeful, we are for a vaccine (or two, or more) that will allow that to happen soon. I am extraordinarily thankful for science, not just for what it has given us as cancer patients, but also for the hope it has given us in the pandemic. The vaccines that are being developed will be done fast, much faster than ever before. That comes with concerns, making sure it's not being rushed. But I trust the science community to look at the results carefully. I truly believe that the developers will make a lot of money, but that they also understand that if they mess this up, it will hurt them forever. Everyone involved wants this to succeed. I'm thankful for that, too.

And, as I am every year, I'm thankful for all of you. You give me a reason to keep writing and to keep learning and sharing. At the risk of leaving someone out, I'm going to name a few names. To William for his thoughtful comments, and for sharing his experience. For Rodrigo (and his mom), for reminding me that I things that help people far away. For Save Pig, who likes what I tweet, and shares with me a deep desire for travel and hugs. For Popplepot, who I would love to share a whiskey with some day. For Ben, who teaches others about CAR-T. For Jacqueline, from the breadbasket of the world, whose neighbors probably grew something on my table. For Sharon, who made my day on her own Thanksgiving.

There are more of you, so many more, and I wish I could name you all. But know that I'm thinking of you, and thankful for you, too, even if you never comment, never leave your name, never let me know that you are there. I do know you are there. (Google counts you, even if they never tell me your name.)

I hope you all can take a few minutes today to think about good things in your life that you are thankful for and happy about, even if it's not your "official" day to do so. We have lots to be hopeful about.

ASH: 35 Year Follow-Up of Follicular Lymphoma Patients

 I'm doing my best to look at presentation from the ASH conference, which will take place in a few weeks. As usual, I'm seeing lots of press releases from pharmaceutical companies that talk about how great their new treatments are, and how well they are doing in various stages of clinical trials.

So far, though, nothing that I am seeing that is going to really change the treatment landscape at all. As you may know, I follow a lot of lymphoma specialists on Twitter, and so far, I haven't seen a lot of talk about any great breakthroughs about Follicular Lymphoma being presented at ASH (or, really, about any lymphomas). That could be because research has been slowed by Covid, or because the oncologists I follow have just been so overwhelmed that they haven't had much chance to really dive into the abstracts.

Whatever the case, that doesn't mean I won't find things to be excited about! Even small steps are still forward progress. So I'll keep reading and trying to find things to share. There's always something.

This time, the abstract that really caught my eye was one called "Thirty-Five Year Follow-up Analysis of Follicular Lymphoma Patients Treated through the Nebraska Lymphoma Study Group: Prognostic Factor Analysis and Outcomes." 

The paper looks at 1037 FL patients who were diagnosed between 1983 and 2020. That's a very long time span to look at, and it includes about 14 years before Rituxan was approved and widely used as part of FL treatments. (If you don't know, Rituxan really changed things for FL patients. It works pretty well on its own -- I haven't needed treatment in 10+ years after receiving Rituxan on its own -- but what makes it really great is that it improves lots of other treatments, too, and makes them more effective.)

I'll get right to thing that I had hoped I would see in this presentation. There was a median follow-up of just over 9 years (which means half the patients were followed up for less than 9 years, and half for more than 9), with a maximum follow-up of 36 years. That means that at least one FL patient in this study has survived for 36 years.

I try to be good about reminding everyone not to read statistics as destiny -- the median survival doesn't have anything to do with your own situation. But I also know lots of patients, especially newly-diagnosed, wonder things like "Will I see my kids or grandkids grow up?" So if you're looking at possibilities, hold on to that hope. Yes, it is possible to survive for a very long time with FL. 

The study looked at things like Progression-Free Survival and Overall Survival, and broke down the patient groups by age, treatment, and FLIPI Score. 

(A quick note on FLIPI Scores. I don't want to spend a lot of time on it -- I think Lymphomation.org does a nice job of explaining it. But the important thing about FLIPI, like anything that involves numbers, is that they are not destiny. The research here presents trends, but lots of patients fall outside the trend. Remember that.)

I won't go through everything that the abstract says, but what I found interesting was how much this confirmed what we already know -- some treatments do better (and last longer) than others, some patients have better outcomes, and some patients can live with the disease for a very, very long time.

As far as treatments go, it is clear that Rituxan has been a very important addition to FL treatments. The median PFS was a little over 12 years for the entire group. That's a lot lower than recent estimates, that some experts say is as much as 18 to 20 years these days. But remember -- this includes people diagnosed as far back as 1983, before a lot of the treatments that we have available today. For patients who received Rituxan (alone or as part of a combo), the median PFS was 16 years, and for those who did not (which would include those patients diagnosed between 1983 and 1997), it was a little under 10 years. Patients who had both anthracycline and rituximab (that is, R-CHOP) had a PFS of over 10 years, compared to those who had only Rituxan (5 years) and only CHOP (3 years). 

PFS is significantly longer at 10.6 yrs in pts treated with both anthracycline and rituximab containing regimen as compared to 5.3 yrs in pts treated with rituximab alone and 3.05 yrs in pts that had only anthracycline based regimen (p=<0.001) (Fig 4). The median OS also was significantly higher in the combination regimen group at 18.8 yrs as compared to 11.3 yrs in rituximab only group and 9 yrs in anthracycline based regimen group (p=<0.001). 

Overall Survival seemed to correlate with FLIPI score. Low FLIPI patients had a median OS of 15 years; intermediate FLIPI patients had an OS of just under 12 years; and High FLIPI about 5 years. (Again, I'll remind you that FLIPI scores are not your destiny. They are scored by looking at several factors that indicate certain risks. A higher score means you have more of these risks, and often a more aggressive lymphoma. It makes sense that lower PFS and OS scores would result, especially when you lump people diagnosed in 1983 with those diagnosed in 2015.)

Focusing on patients who had relapsed or died after that 10 years (190 out of the 1037), the study found that 13% died from their lymphoa, 4% from a different cancer, 2% from something related to their treatment, 23% from something not related to their disease, and 56% unknown. Another 278 patients survived longer than 10years, and 119 of them had gone over 10 years without a relapse.

It's all very interesting, looking at a group over 35 years. 

Is it useful? Yes, in many ways. It would be a lot more useful to look at the group over time -- what the numbers are for patients before Rituxan was approved, versus those from the last 10 years or so. Then we'd really see how much better off we are today than we would have been 30 years ago. (And there are lots of studies that do that, including this one from a few months ago.)

Still, if nothing else, the study confirms what I said above -- some treatments do better (and last longer) than others, some patients have better outcomes, and some patients can live with the disease for a very, very long time.

There's lots to be hopeful about and thankful for. I'm not one to say we have a "good cancer" or that cancer is a good thing in general. But I think it's true that medicine progresses, and that whoever we are, wherever we are, we're probably better off in many ways than those who came before us. 

More ASH abstracts soon.

ASH: Covid-19 and Blood Cancer

This year's ASH conference takes place in just a few weeks, from Wednesday, December 2 to Friday the 11th. 

If you're new to all of this, ASH is the American Society of Hematology, the largest group of doctors who study blood disorders (including blood cancers) in the U.S. Their big conference happens every December, and its one of two cancer conferences that I get most excited about every year, because there are usually some interesting about Follicular Lymphoma every year. 

This year's ASCO conference (that's the other big one that I like) was great because patient advocates were allowed to attend for free, since it was online anyway so they wouldn't have to give us any free swag that doctors get. No such luck with the ASH conference -- if I want to attend, I need to pay a few hundred dollars. Not going to happen. But I can still look at the abstracts online, since they are free for anyone to look at. I won't get the in-depth look at the research that I got when I "attended" ASCO, but that's OK. I can learn plenty from the abstracts, and of course, share it with you. 

To be honest, I haven't even looked at the abstracts yet, even though they've been available for almost two weeks. I've just been too busy. 

But I did see a small discussion of one abstract on Twitter, and it's an important one, so I want to share it with you.

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 The paper is called "Severity of Sars-Cov-2 Infection in Patients with Hematologic Malignancies: A COVID-19 and Cancer Consortium (CCC19) Registry Analysis." It's basically about how Covid-19 has affected blood cancer patients. I've been waiting months for information like this.

And before I get into it, I want to remind you: statistics don't tell you anything about your own individual situation. We need to learn what we can from them, but always keep in mind that statistics measure what happened in the past to a small number of people. Other peoples' numbers do not determine your destiny.

That said, it's probably no surprise to anyone reading this that Covid-19 outcomes for blood cancer patients are, overall, worse than for the general population. I've been hearing since the spring that people with blood and lung cancers would probably have the most difficulty with Covid-19, given the virus's focus on the respiratory and immune systems. 

The paper looks at data from the Covid-19 and Cancer Consortium, or CCC19, a group of about 100 institution that have been collecting data about cancer patients who have contracted Covid. The way it works is, doctors whose cancer patients have contracted Covid can upload information about the patient (age, sex, treatments, etc.) to the database, and every few weeks, the consortium releases an analysis about how certain groups of cancer patients have been affected by Covid.

The primary endpoint for the research -- the main thing they wanted to find out -- was how many blood cancer patients has "severe COVID-19 illness, " which they measured as meaning the patient needed mechanical ventilation, was hospitalized, was in an intensive care unit (ICU) requirement, or died. They broke the data down into types of blood cancer, as well as things like treatment type and stage, comorbidities, etc. 

To make things a little bit easier, I'm going to include the entire table from the abstract. But I want you to remember what I said about statistics.

I'm going to focus on just one line here: "Low-grade Non-Hodgkin lymphoma," which would include Follicular Lymphoma (as well as some others). 

Of the 757 patients in the study, 95 of them had low-grade NHL. 36% of these patients who were diagnosed with Covid ended up with severe disease, as the researchers define it. 24% ended up in the ICU, 19% on a ventilator, and 16% died. All much higher than the general population. Not a surprise. 

Other numbers are not broken down by specific disease, so it's harder to say how Follicular Lymphoma patients are especially affected. But the trends are easy to see:

Patients in active treatment are more vulnerable, and have worse outcomes. Patients who have progressive disease, rather than stable disease or in remission, have worse outcomes. Patients who are over 60, or who have certain other conditions, have worse outcomes. 

Again, none of this is a surprise, it's just been conformed by research.

And I will say again -- trends in numbers of other do not necessarily indicate something about you personally.

The lesson from all this is, to me, the same lessons that I heard back in March:

We are more vulnerable, so we need to be extra careful. We need to ask our oncologists questions, and follow their advice. We should follow the same public health advice as everyone else -- stay away from crowds, keep 6 feet/2 meters from others, wear a mask, and wash your hands.  

Remember, having blood cancer means we have a better chance at worse outcomes if we get the disease. But it doesn't mean we are more likely to get it than other people are. We can and should take the same precautions as everyone else, with maybe some extra care thrown in.

(And I'm going to assume that anyone reading this believes strongly in what science tells us, and values it, so there isn't going to be an argument about public health guidelines. Maybe about how they are carried out by individual governments, but not the basic science. I saw a couple of people posting on an online NHL group about Covid, who said they don't wear masks because it's a "personal choice." Goodness gracious, people, wear a freakin' mask. Make the choice to stay alive, for cryin' out loud.)

(Those last few sentences were heavily edited for language. I hope the translator works on them, and conveys my passion.)

And all of this is coming out as cases are increasing, especially in the U.S.

It's all scary, but there's still plenty of reason for hope. 

This research should have all of the usual cautions that any research has -- it looks at a fairly small number of patients (757), and an even smaller number of indolent NHL patients (95). Larger numbers of patients might tell a different story. (Perhaps better, perhaps worse.)

The research does not look at changes over time. That is, in the general population, there has been a decrease in severe cases and deaths over time, as doctors have learned how to treat Covid. It's certainly possible that these numbers are better now than they were in March, if we were able to break them down that way. (And who knows, maybe they will be broken down that way at the actual ASH conference.)

And most hopefully, there has been good news about a possible vaccine, with potentially more good news coming in the weeks ahead about other vaccines in development. 

And when the vaccine has been deemed truly safe and effective, the most vulnerable people should be the ones who are at the front of the line, including health care workers, certainly, but also patients in active cancer treatment not too far behind. 

But whatever you do, don't let a new set of numbers make you more anxious. Nothing has changed, really; you're no more vulnerable than you were yesterday. Don't let anxiety about the disease change the way you've been living -- carefully and smartly. Look at those numbers and take them as a sign that you've been doing the right thing all this time, that it's been worth it because your behavior has kept you safe, and that there really is a light at the end of the tunnel.

Stay well. And look for more ASH commentary in the weeks to come.