Exercise Recommendations for Cancer Survivors

I've seen two articles in the last couple of weeks that are focused on the importance of exercise for cancer survivors. As you probably know from reading, I have become more and more focused on the role of survivorship lately -- the things we do after diagnosis and treatment that can improve our Quality of Life. 

The articles about the importance of exercise has especially caught my eye for a few reasons. 

First of all, I've been in Physical Therapy for a knee problem for a few months. I've been strengthening my leg muscles to help stabilize my knee, and I'm remembering how much I used to enjoy those kinds of exercises. I don't go to the gym much these days, but the PT work is a lot like a gym workout.

Second, for the last few weeks, I've been attending a yoga class. I tried a Tai Chi class, which I was excited about, but I had to stop it because of my (unrelated) knee issue.  I'm enjoying the yoga class, which is called "Yoga for Healthy Aging." The movements are gentle, but it's still a workout, and the focus is on things like flexibility and balance that we all need as we age. I'm the youngest person in the class; one man introduced himself by saying "I've been doing yoga since I was 83 years old." How's that for inspiring?

Third, I spent two nights watching the Olympics. I love cheering for the "old" athletes -- anyone over 30. More inspiration to get up and move.

Because I like to move my body, and I find that I feel better when I do.

The first of the two articles I saw was the JAMA Network from last week, called "Leisure-Time Physical Activity and Cancer Mortality Among Cancer Survivors." This article reported on research that looked at six different large studies from the past. The studies each looked at survivors of bladder, endometrial, kidney, lung, oral cavity, ovarian, and rectal cancer. The participants in the studies completed surveys and had their leisure-time physical activity tracked 1976 through 1997. There were 17,141 cancer survivors in the combined studies.

The researchers found that even low amounts of moderate to vigorous physical activity resulted in lower risk of death from cancer for patients who had been diagnosed with bladder, endometrial, and lung cancer. Doubling the recommended amount of exercise was associated with lower risk of death from cancer for patients diagnosed with oral and rectal cancer. For some patients in the study, their risk of death from cancer improved when they exercised even if they were inactive before they diagnosed. 

Now, there are all kinds of reasons why this doesn't really prove anything for us. There were no blood cancer survivors at all in this study, and it took place many years ago. But it's one of many that show that movement can be beneficial for cancer survivors; the first words of the Introduction the study are "The role of physical activity (PA) in mitigating cancer risk is well recognized." 

At around the same time, I saw a article from last month from Cancer: Interdisciplinary International Journal of the American Cancer Society. It's called "Exercise recommendations for older adults living with and beyond cancer: A consensus statement by the Advancing Capacity to Integrate Exercise Into the Care of Older Cancer Survivors expert panel."

The idea behind this was that there are lots of recommendations for older folks to exercise, but none that take into account the unique needs of cancer survivors over 65. This article presents some guidelines for how that group of folks should consider exercising.

To be clear, it doesn't recommend specific exercises, which is kind of the point. It assumes a few things -- first, that some cancer survivors over 65 do not move as much as they should. Second, that they have specific needs as cancer survivors. And third, that everyone's situation will be a little different. That's important. My exercise needs aren't the same as yours.

So the guidelines are kind of general. They start with the idea that someone who is a recent survivor should get a full medical evaluation before they begin exercising, and should the be evaluated by someone who understands how to make sure someone can handle the exercise they might want to do. They recommend tests for things like mobility and balance -- things that can be affected by the side effects of the disease or by treatments. They also recommend that an expert help design an exercise program, make sure that it is being followed safely and correctly, and that behavioral support is also offered (because it's pretty easy to get discouraged when you start exercising and you can't do everything you wish you could).

The principle guiding all of this is that barriers and risks should be kept as low as possible. The program should be manageable and enjoyable, not creating more mental or physical problems than the person started with.This is ultimately about Quality of Life -- being able to do the things that you want to do. That can be a struggle for some of us, especially as we get older, and especially as we deal with the effects of cancer. 

So, to me, the personal message from all of this is to keep doing what I'm doing. My wife and I still walk about 2 miles every morning with our dog. I'm in physical therapy for my knee, not ignoring problems until they get worse. I wish I had enjoyed Tai Chi as much as I had hoped I would, but that's OK -- I'm trying yoga instead. And if this doesn't work out, I'll try to find something else. But I'll keep trying and keep looking.

As we get older, my wife and I seem to collect doctors. We have a new health condition or  new prescription every six months or so. But we also have goals, like continuing to travel. And so taking care of ourselves physically becomes very important to us. Quality of Life -- doing the things that we want to do. 

So wherever you are physically, I hope you'll take some inspiration from the Olympics and try to start moving more. (And take advice from your doctor first.) I had lots of inspiring Olympic role models from the U.S. to choose from, but I have to say, the most impressive to me was Johannes Høsflot Klæbo, the cross country skier from Norway. He won every cross country event, from a sprint of 1,585 meters (about one mile) to a 50 kilometer race (about 32 miles). At one point, he was running uphill on skis at a pace of a 6 minute mile. Just amazing to be that great in so many different ways.

Take your inspiration where you can. But keep moving forward. 

 

FLF Survey

 A quick post today.

The Follicular Lymphoma Foundation is conducting a survey: "We're Listening - what information you would like about Follicular Lymphoma?"

As you may know, I've been doing some work lately to help support the FLF. I believe strongly in their mission, to educate and inform patients with Follicular Lymphoma, to support those who support us, to help health professionals understand FL, and the provide money for research for a cure. It's hard to be a patient with FL and not support their work.

As part of their mission, they'd like to know more about what FL patients and caregivers want to know more about. They will use the information they gather to do things like develop programs, expand the information on their great website, and find other ways to provide us with more information and support.

The survey should take about 5-10 minutes to complete (it took me about 10 minutes). The information is anonymous, though if you want to include an email address, you'll be entered in a drawing for one of three £20 Amazon vouchers (that's about $27 for us in the U.S.).

Whether or not you put in for the voucher, it's a small time commitment for a big payoff for all of us. 

The survey closes on Tuesday, February 24, so get to it soon.  

You can find the survey here. Definitely worth the 10 minutes. 

Thanks for your help. More Follicular Lymphoma info soon. 

R-Squared 15 Year Follow-Up

A couple of weeks ago, a reader named Johnatan sent me a link to an article from Blood and asked if I'd seen it yet. I had not seen it -- it came out while I was reading all of those ASH abstracts. But it's worth taking a look at.

The article is called "Phase II Trial of lenalidomide plus rituximab (R2) in previously untreated follicular lymphoma: 15-year follow up data from MDACC Trial." 

It's an important study for a couple of reasons. 

First, it's always great when we get long-term data about a treatment. And 15 years is a long time. I love the idea that this study was starting when I was just out of treatment, and I had no idea it was even happening. Just think about how many amazing clinical trials are happening right now that we won't even hear much about for a few years.

But that 15 year follow-up is great. We always assume that a new treatment will continue to be good, but it's great to see the actual data that shows it.

Second, a long-term study of R-Squared (Lenalidomide + Rituxin) is especially important because it seems that R-squared is becoming the base treatment for lots of new combinations. In other words, researchers used to say "What would happen if I added thing new thing to CHOP or Bendamustine?" Now they're saying "What would happen of I added this new thing to R-Squared?" Just look at the excitement over Epcoritimab. It's not on its own -- it's in combination with R-Squared.

The original study that the article discusses was a phase 2 clinical trial at MD Anderson Cancer Center. It involved 79 patients with Follicular Lymphoma who had not yet had treatment. The participants were broken into two groups, one receiving six cycles of the combination and one receiving 12 cycles. The participants had a range of risks, based o FLIPI scores. The Overall Response Rate was 99%, with the Complete Response Rate at 87%.  Even with the long-term follow-up, a large number of patients could not be evaluated, with almost half not showing up for clinical visits after a while, particularly during the Covid pandemic.  

Despite that, the long-term follow-up numbers look great. The median Progression-Free Survival (the time it took from diagnosis for the disease to progress) as 16.5 years, with 61% of patients having their disease not progress for 10 years. At 30 months, 76% of the patients were in Complete Response. The patients who were in the group that received 12 cycles of the treatment had a longer median 10 year PFS than the 6 cycle group (75% vs 70%). And while 9 of the patients being followed died during the 15 year follow-up, only one was for a cause related to Lymphoma. The 10 year median Overall Survival was 95%. There were 11 patients who experiences POD24, progressing with 24 months, and 5 whose disease transformed, with the time to transformation ranging from 9 months to 15 years).

I would have loved to tell you that every patients was doing great after 15 years, but that's not how things work, unfortunately. But I can tell you that these 15 year follow-up numbers are excellent. A 10-year median Overall Survival of 95% is kind of amazing. 

So it's easy to see why R-Squared is becoming the base treatment for other combinations. I have still not seen numbers that show that R-Squared has become kind of the default treatment for patients (the most recent one I can think of had R-Squared being given to less than 10% of FL patients).  But things change over time. 

Thanks, Johnatan, for sharing the link to the article. I'm always happy to receive things like this, in comments or by email. Always feel free to contact me if you think I can be helpful, and I'll do my best to help.

 

Oncologist Appointment

I had my six month appointment with the oncologist this morning. Everything looks good.

It was kind of a bad day for the appointment. I felt a head cold coming on last night, and it was worse this morning when I woke up. So I wore a mask to the appointment, something I haven't one in a few years. It was the first of several things that were a little bit off.

Mt GPS took me a different way to the hospital. We're still dealing with piles of snow on the sides of the streets, so traffic was slow. The parking garage at the hospital has open walls, so there was snow everywhere there, too, blocking some spaces. I had to park on a different floor than usual. Whenever anyone called  my name, they said "Robert" instead of "Bob," which is my preferred name in my chart. The room where they take my vitals was blocked off, so I went into a waiting room where other people were sitting, and they did my BP and temperature on a portable machine. 

None of this is normally a big deal. Who cares which floor of the garage I park on, you know? But when my goal at an oncologist appointment is to have everything be "stable," even small bits of instability are noticeable. Maybe I'm just superstitious.  But I didn't feel as good as I usually do going into an appointment.

But as I said, everything was OK. Nothing abnormal on the physical exam he always does -- nothing swelling that shouldn't be swelling. He commented on how long it had been since I had a scan, and saw that I'd had some scanning done on my heart recently, so he took a look at that just to check in on the lymph nodes near my collar bones. "They look great," he said. "Nice bonus to see them on the heart CT scan."

Bloodwork was also solid. We're keeping track of one of the numbers that my General Practitioner flagged as a little high. Interesting, she and my oncologist are in two different hospital systems, and hers says the number was just over the normal limit, and his system said it was within normal range. Still, he said it was something we'd keep an eye on, and that I shouldn't worry about it.

We talked a little about the weather, and about the Winter Olympics -- we were both big fans of the 90's music theme in the Ice Dancing Competition yesterday. (I had a hard time deciding which Ice Dancing duo to link a video of, so I went with the Italians skating to Backstreet Boys. You always have to choose the Backstreet Boys.)

So, nothing much interesting to report. 

Which is good, because we like things to be uninteresting when it comes to Lymphoma.

I'm going to take a nap and then hope the day feels a little less off. Having a good report from the oncologist always helps. 

 

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.

*****************

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). 

Clinical Trial on Resilience in Lymphoma Patients

I got a notice from the Miller School of Medicine at the University of Miami about a clinical trial that they are participating in. It's for Follicular Lymphoma patients, but it's not for a new treatment. It's for survivorship.

The trial is called "SMART 3RP Lymphoma: Increasing Resiliency Among Early Post-Treatment Lymphoma Survivors" (the official write up at ClinicalTrials.gov is here).

The article from the Miller School gives a nice description of the trial and what it hopes to accomplish. The .gov site gives a summary: "The goal of this clinical trial is to learn if a mind body resilience group program can help increase lymphoma survivors' ability to cope with and manage the challenges that come with the transition into early post treatment survivorship."

So I suppose, in a way, this is about "treatment," but it treating the emotional side effects of the disease rather than the disease itself. It will teach some ways to deal with being a survivor, not a patient. It will help the study participants "manage stress, strengthen coping and improve day-to-day quality of life."

"Resilience" is an interesting thing. One of the HealtheVoices conferences I went to a few years ago featured a talk about resilience. It's the ability to 'bounce back" after encountering problems, and it's a skill that can be learned (rather than a part of one's personality). As one of the survivorship experts at Miller says in the article, "“Resilience isn’t a trait you either have or don’t,” said Frank Penedo, Ph.D., associate director for population sciences, the Sylvester DCC Living Proof Endowed Chair in Cancer Survivorship and director of the Sylvester Survivorship and Supportive Care Institute. Dr. Penedo is site principal investigator at Sylvester. “It’s a skill set, like learning to play a musical instrument. With guided education and practice, survivors can make everyday stress more manageable and restore confidence in their ability to manage their recovery.”

The trial will involve 250 patients who have had treatment for lymphoma within 5 years. (It doesn't specify particular types, so I am assuming FL is included.) Half of the participants will take part in eight videoconferences lasting 90 minutes each, where they will learn about three different resilience practices: Mind–body practices like guided imagery, mindfulness, and yoga, bring about a “relaxation response”; cognitive behavioral strategies to identify and reframe negative thoughts; and positive psychology to help with personal growth, social support and healthy behaviors. To compare the results of this practice, the other half of the group will also get some help -- a Health Education Program (HEP) that focuses on health behavior education and self-monitoring. The researchers who designed the study think the SMART 3RP folks will have an even greater Quality of Life than the other group, though both should get some benefit.

The official .gov site says that recruiting would begin on January 1, 2026, though it also says that recruiting hasn't started yet. It also says that the study will only take place at Massachusetts General Hospital in Boston. However, the Miller School article says it will take place at 3 sites -- Mass General, The Miller School/Sylvester Comprehensive Cancer Institute in Miami, and the Huntsman Cancer Institute in Salt Lake City. (It also says the participants should be within 2 years of treatment, not 5 years.)

So if you live near one of those three sites, consider looking into the trial. The Hospital of Cancer Center website probably has a page devoted to clinical trials, and you can find out more there. Or ask your oncologist. I know some patients are hesitant to go into a trial, and that's OK. But this one seems like the potential benefits are far greater than the risks.

I'm excited about this trial because it recognizes the importance of survivorship, something I have been more and more interested in the farther I get from my own treatment experience. For a disease like FL, where we might live for decades after treatment, or we might need multiple treatments over the years, or we might just need to learn to live with cancer in our bodies, a focus on survivorship is crucial, and a trial that takes it seriously is a wonderful thing.

 

The Business of Follicular Lymphoma

I get my information about Follicular Lymphoma from a few different places, but one big source is from Google Alerts. Once a day, I get an email from Google with links to anything that has been published recently about FL. That can be anything from an article in a medical journal to a story in a local newspaper in Australia about a fundraiser for an FL patient. (I've gotten alerts for both in the last week.)

Another type of alert that I get frequently is a financial analysis of FL. These alerts are usually something like an announcement from a company that you can pay for a report that will tell you which stocks or shares to buy in companies that are doing work related to FL. Maybe you can get rich by investing in a pharmaceutical company that has a successful treatment that's about to be approved.

I will admit that I have mixed feelings about all of this, and I think that's true of many cancer patients.  On the one hand, I really don't like the idea that someone is making money off my disease. We've all heard stories about drug companies that raise their prices to unreasonable levels. On the other hand, I'm grateful to the company that makes Rituxan, which helped me and thousands of other FL patients. 

The reality is, we live in a world where cancer treatments cost money to research, develop, and manufacture. It's going to cost someone money and it's going to make someone money. 

I mostly ignore the links like this that I get from Google, but every now and then I take a look. Financial analysis is something very different from medical analysis. CAR-T is an excellent treatment and is very successful for a lot of people. But at almost a half million dollars per treatment, it's out of reach for a ot of patients. And that's true for lots of patients and lots of treatments all over the world. 

But this is one that I read, and I thought it was pretty interesting. A financial perspective isn't necessarily a bad thing -- if someone is going to make money, maybe there's something they can tell me that I didn't already know. (Because if everyone already knows it, it's not going to make you as much money.)

The article is called "Refractory Follicular Lymphoma Diagnostics Market Research 2026 - Global Industry Size, Share, Trends, Opportunity, and Forecast, 2021-2031," from Research and Markets.

As the title says, it focuses on investments in refractory FL -- second or later treatments. 

But this article doesn't focus on treatments. Instead, it focuses on investing in companies that deal with diagnostics. Specifically, it looks at companies that deal with Minimal Residual Disease (MRD) monitoring and liquid biopsies. 

Both of these things are part of diagnostics -- figuring out if someone has FL, in this case, a return of FL. Both are ways of fairly easily measuring whether a patient has cancer. Instead of the traditional way of performing an incisional biopsy -- surgically removing a lymph node to check for the presence of cancer, or a needle biopsy, which pulls cells out without a surgical procedure.  Needle biopsies are less invasive but often inaccurate, since they cover such a small area. Surgical biopsies are more accurate but very invasive. A Liquid Biopsy or MRD analysis uses a blood sample to find cancer DNA. More accurate and less invasive.

The financial logic here makes sense. As newer treatments for refractory and relapsed disease become more effective, with longer PFS, that means patients will (in theory) need fewer treatments. If your financial analysis says to invest in X treatment because most patients will eventually need it, then it's smart to invest in X. But if your analysis says that fewer patients will need X because the W treatment works so well, then it makes sense to hold off on investing in X. Instead, you invest in the diagnostics -- more patient will need to know whether or not their disease has returned, and these new diagnostic tools will become more popular -- and more profitable. 

Of course, there is a downside, too. Just like CAR-T is out of reach because some health systems or insurers won't pay for it, the same is true for these diagnostics. As the article says, some folks won't get them because they won't get paid for. The medical analysis is different from the financial analysis.

I think it's all very interesting to me. As much as I value knowing what doctors think, their minds (hopefully) aren't on what's going to make someone money, but rather on what's going to make someone healthy. So maybe the financial analysis can offer us some insight. 

I shouldn't have to say it, but I'll say it anyway -- you shouldn't take any of this as financial advice. I'm always reminding you all that you shouldn't take what I say as medical advice -- talk to your doctor instead. Same thing with your money -- don't take what i say as financial or investing advice. I'm not a finance guy. After all, I', too dumb to have adverting on this site. Plus, I take furniture out of my neighbors' trash.  I'm not exactly Warren Buffett. 

But I do like to learn, and I'll take my education any way I can get it.