Sunday, August 13, 2017

Video Journal of Hematological Oncology

A few days ago, I posted some videos from the Video Journal of Hematological Oncology. This morning, I tried to watch a video that they had posted on Twitter, and I got this message:

I'm not a healthcare professional, so I didn't click. Which is too bad, because the video looked interesting.

I don't understand the logic of this apparently very new policy. It shows a deep misunderstanding of what it means to be a blood cancer patient in 2017. We have access to information -- lots of information. And a lot of it is crap. The VJHO has the opportunity to give patients (and not just healthcare professionals) access to that information in a way that is very easy to find and understand. Videos like theirs provide information that makes it easier for us to talk to our doctors about our conditions.

There are plenty of medical journals that are subscription-based; you can see an abstract, but not the full article, unless you pay. I completely understand that. But that's not what the VJHO is doing -- they are keeping it available for free, just telling patients that they can't come in.

That's really discouraging.

Their YouTube channel is still wide open, though. I won't post anything from it, but you might be able to find something interesting on there. (For now.)


Update (Tuesday, Aug 15):
I wrote to the VJHO, and received a reply from their editor. He explained that contributors to the journal, and the editorial board, are concerned about non-healthcare professionals misinterpreting what they see in the videos, which has some legal implications, especially for things that involve prescription medications. I understand the legal issues, though I disagree with some of the other reasoning. Still, I respect their decision. More importantly, he said that they were planning another video channel aimed at patients and caregivers, with some input from patients. I applaud them for that, and I hope their plans for the patient-focused video channel actually happen. I'll update you when I hear more.

Friday, August 11, 2017

Alternative Therapies & Follicular Lymphoma: It's Complicated

Yesterday, the Journal of the National Cancer Institute published an article called "Use of Alternative Medicine for Cancer and Its Impact on Survival." It looks at the use of Alternative Thrapies, and the news isn't good for people who make that choice. And while Lymphoma, especially Follicular Lymphoma, wasn't a cancer that was studied, it's important to think about this topic as it relates to that cancer that effects our lives.

The study looked at 840 patients with several types of cancer -- breast, prostate, lung, and colorectal.Two-thirds of the patients received Conventional Cancer Therapies, which the researchers define as Chemotherapy, Radiotherapy, Surgery, or Hormone Therapy. The rest took Alternative Therapies, by themselves, without Conventional Cancer Therapies. The main finding of the study is that those who took only Alternative Therapies had a lower survival rate than those who took Conventional Cancer Therapies.

There are a couple things that should be pointed out here. While they don't get into what the Alternative Therapies are exactly, they do see the problem with them as being that they are "ineffective and unproven." So while something like Rituxan doesn't exactly fall into any of their categories, it has been around for 20 years and saved and extended thousands of lives, so that doesn't qualify as either "ineffective" or "unproven." They mean treatments that have not been through a rigorous clinical trial process.

And it's also important to note that they are looking at Alternative Therapies on their own, not those that are combined with Conventional Cancer Therapy. That combination approach is sometimes called using a "Complimentary Therapy," since it is used as a compliment to traditional medicine, not as an alternative to it. does a nice job describing these three different approaches. Alternative Practice (they don't call it "medicine," and I agree with that choice) is unproven. Complimentary practices, as they say, help you work through Conventional Therapies: "Yoga for pain or stress relief is an example.  Exercise to help manage fatigue is another.  Such activities are sometimes called integrative medicine when used by medical doctors."  They refer to Conventional Cancer Therapies as "Evidence-Based Medicine," since those treatments have gone through trials to back up the science that created them. I think they do a really nice job of distinguishing between those three things.

Now, my guess is that anyone who has been reading Lympho Bob for a while knows that I am a strong advocate for Evidence-Based Medicine, and not so much into Alternative Therapies. So I will assume that you feel the same way.

Still, it's worth talking about why Alternative Therapies are tricky when it comes to Follicular Lymphoma.

As you know, Follicular Lymphoma is often slow-growing. And sometimes, it "waxes and wanes" -- gets better on its own, and then gets worse on its own, often while we are watching and waiting. So while we might be watching our FL, trying to be healthy, doing yoga three times a week and eating broccoli with every meal, it's tempting to think that it's the yoga and broccoli are the reason we  haven't needed treatment yet. But they probably aren't the reason -- it's just the nature of our disease.

Not that there is anything wrong with yoga and broccoli. They are both great. And if they make you feel good, that's even better. But they probably won't cure your cancer.

And I "probably" because maybe someday we might find out that yoga and broccoli, in some way, do have an effect on cancer. But that would only be after some very rigorous, scientifically-designed, evidence-based testing. And not because you saw on a message board that they might, or that a friend of a friend swears that they do.

As someone who watched and waited for two years before initial treatment, and then who has waited for almost 8 years since then, I know how easy it would be to think that there was something that I was doing that put me in the good position that I am in. But, off the top of my head, if I had to think about something I've done consistently in all that time, that might explain why I haven't needed treatment, it's probably been blogging. Writing about cancer has certainly been helpful for me, emotionally, anyway, but probably not physically. And there are lots of cancer bloggers who have unfortunately not survived for as long as I have.

Also, I have a hamburger and fries about once a week. I don't think that's helped either. Also, I drink Scotch, which probably hasn't helped, either. (Although I'm willing to sign up for a trial for that one.)

The point, of course, is that Follicular Lymphoma is a complicated disease. It acts all weird, and that makes it hard to know what has been helping and what hasn't. The only real way to tell is to trust science.

Monday, August 7, 2017

Follicular Lymphoma Videos

The Video Journal of Hematological Oncology just published a couple of videos on Follicular Lymphoma, featuring Lymphoma Rock Star Dr. Nathan Fowler of MD Anderson.

(I think one of you loyal readers is a patient of his, though I might be thinking of someone in the support group.)

The videos were posted a couple of days ago, though they were recorded at the ASCO conference in June. Dr. Fowler reports on some of the Follicular Lymphoma research that was highlighted at the conference.

The first video is called "Novel Therapies for the Treatment of CLL, MCL, and FL," so he discusses some of the research for a couple of other slow-growing lymphomas as well. But he has a lot to say about FL in particular. He focuses on the long-term follow-up data for the BRIGHT study and the STiL study. Both involved some FL patients who ad not received treatment.

The BRIGHT study looked at Bendamustine + Rituxan, compared to R-CHOP and R-CVP, and the STiL study looked at B+R vs. R-CHOP.. After a follow-up of 7-10 years, the Overall Survival was not different for the treatments, in both studies. It also found that there was not an excessive death rate. This is important, because, as Dr. Fowler points out, a study at ASH involving Bendamustine seemed to point to increased risk of death. Good to have some evidence that goes against that.

The second video is called "Ibrutinib in Combination with Rituximab -- The Future of Treating FL." In this video, Dr. Fowler discusses a trial that he reported on at ASCO.  He discusses the combination of Ibrutinib (a BTK inhibitor) and Rituxan, and points out that the Response Rate (around 80%) is higher than it is for either of those two treatments by themselves. The focus was especially on patients who wouldn't be able to tolerate chemotherapy (either because they were elderly or had other health problems), and they will start a phase III trial looking especially at those populations.

The idea in the title of Ibrutinib and Rituxan being "the future of treating FL" might be a little over-enthusiastic (Dr. Fowler doesn't really say that), but it does highlight the trend toward more targeted treatments, and away from traditional chemotherapy (though, as the BRIGHT and STiL trials show, there is still a place for that.)

I want to put in a small plug for The Video Journal of Hematological Oncology. They post mostly short videos (under 5 minutes) from experts in their fields. I sometimes use them as starting points -- they usually give a good summary of research, and then I can look into it for more detail somewhere else. Plus, it's always fun to see videos of researchers who are obviously excited about the work they are doing.


Thursday, August 3, 2017

Keytruda and Rituxan for Follicular Lymphoma

We're back to looking at some recent research in Follicular Lymphoma treatments.

At the 2017 International Conference on Malignant Lymphoma biennial meeting in Lugano, Switzerland in June, researchers presented early results from a phase II clinical trial for Rituxan and Pembrolizumab, also known as Keytruda (and since that's easier to spell, it's what I'm going to use).

Keytruda is an interesting treatment -- it has been tried out on a bunch of different cancers, not just FL, or even blood cancers. It is perhaps most famously been used in treating former U.S. President Jimmy Carter's brain cancer. It is the first treatment approved by the FDA for a biomarker, rather than a body part. In other words, most cancer treatments are approved for a cancer in the blood, or the lungs, or the colon. But Keytruda targets a genetic abnormality that is present in lots of different types of cancer. There are some oncology experts who say that is the future of cancer treatment, focusing on genes and not body parts.

Keytruda is a humanized monoclonal antibody (which explain the "-mab" at the end of its harder-to-spell name), like Rituxan (also known as rituximab). Just like Rituxan targets a protein on the surface of an immune cell, Keytruda targets the PD-1 receptor on an immune cell. PD-1 stands for Programmed Cell Death -1. The PD-1 receptor is important because it tells the body not attack itself -- it is known as an "immune checkpoint."

So here's where the problem comes: the cells for many different types of cancer will attach to the PD-1 receptor and block it. That means that the immune system can't recognize the cancer cell as an invader. While it would normally kill off the cancer cell, now it doesn't even know it's there, and the cancer cells grows and grows.

Keytruda is a "checkpoint inhibitor." It attaches itself to the PD-1 receptor, so the cancer cells can't. This lets the immune cell see the cancer cells as invaders, and destroy them. It's a great example of Immunotherapy, where the treatment helps the immune system do it's job normally to kill of invaders like cancer cells.

The phase II clinical trial that combined Keytruda with Rituxan involved a small number of patients (only 30), but the results were very good, with an 80% Overall Response Rate. Keytruda seems to help out certain types of immune cells that kill invaders in a particular way (that particular way is called Antibody-Dependent Cellular Cytotoxicity, or ADCC, in case you want to look it up). Conveniently, Rituxan works through ADCC. So the thinking of the researchers was that combining Keytruda and Rituxan would work well for Follicular Lymphoma.

The patients in the study have all had treatments with Rituxan in the past. As I said, the Overall Response Rate was 80%, with 60% achieving a Complete Response, after a follow-up of 7 months. Pretty good numbers. There were some side effects, particularly related to immune system problems (which is expected when you give a treatment that blocks the things that keep immune cells from controlling themselves). But they were considered manageable.

There are lots of limitations to this study -- it's a small number of people (just 30), and it was done at just one institution (MD Anderson), and the follow-up time is pretty short (7 months). But the researchers argue that these numbers are good enough to expand, and that would seem to be the case.

Keytruda is an interesting treatment, and it has seen a lot of success in lots of different cancers that are affected by the PD-1 receptor. But it's not perfect, by any means. In fact, about a month ago, trials for a combination therapy that included Keytruda for patients with Multiple Myeloma (another blood cancer) had to be stopped because of several deaths. Again, this treatment can do a number on the immune system, and certain combinations will probably make that affect worse. It's important to note that the Keytruda/Rituxan trial reported no deaths, but it's a good reminder that every treatment carries some risk.

For now, though, this may represent yet another non-chemotherapy treatment that is worth keeping an eye on.

[I didn't include a direct link to the abstract for this presentation at the International Conference on Malignant Lymphoma, because the ICML doesn't have a search function for their abstracts, so I can't give a direct link to just this one. However, if you want to see the abstract for yourself, then follow this link to the Abstract Book, then scroll down to abstract #109, "HIGH RESPONSE RATES WITH PEMBROLIZUMAB IN COMBINATION WITH RITUXIMAB IN PATIENTS WITH RELAPSED FOLLICULAR LYMPHOMA: INTERIM RESULTS OF AN ON OPEN‐LABEL, PHASE II STUDY.]

Monday, July 31, 2017

Pan Mass Challenge

I'm asking, once again, for you to consider making a donation to cancer research.

As he has for many years, my brother is again riding in this year's Pan Mass Challenge, a bike ride through Massachusetts that raises money for cancer research at the Dana-Farber Cancer Institute in Boston. Over 37 years, the PMC has raised over $500 million for research.

Last year, riders raised $47 million, and a pretty good chunk of that went directly to research on blood cancer -- $3.1 million, or about 15% of the total raised.

My brother works hard all year to train for the ride. He has personally raised almost $60,000, and this will be his 10th year riding. I was just one of the inspirations for him to start riding; like many families, we've had our share of losses to cancer, including our mom. I'm proud of my brother and grateful to him for all of his hard work.

The PMC will take place this weekend, and if you are looking for a place to make a donation to cancer research (even a small donation), please consider supporting my brother. You can get to his donation page by clicking here, and then entering the EgiftID MM0386.

Thanks for considering it.

And have a good ride, Mike.

Thursday, July 27, 2017

Patient Distress Guidelines from NCCN

I've been thinking (and writing) a lot lately about the emotional effects of Follicular Lymphoma. I know I keep saying it, and you all already know it, but Follicular Lymphoma is as much an emotional disease as a physical one. Many of us show no symptoms, and need no treatment, for long periods. But that doesn't make our emotional needs any less important -- in fact, it might make them even more important.

I recently came across an article that followed up on the National Comprehensive Cancer Network (NCCN) national conference, which took place in March. Some participants were asked about "what's hot" in their fields, and one pointed to the NCCN's new Distress guidelines for patients (they were new in March, anyway).

This was the first I had heard of the Guidelines, and they actually look great. NCCN, which is made up of oncologists and the institutions they work for, has published guidelines of different types for oncologists for a long time. They have only recently started putting the same information into publications for patients. So while doctors and nurses and other cancer professionals had guidelines for helping patients in distress, there weren't any guidelines for the patients themselves.

And that's a problem.

There's no guarantee a doctor or nurse will read the distress guidelines, let along use them to help cancer patients. (Not sure how long the doctor guidelines have been out, but of all the doctors and nurses I have seen, no one has mentioned them to me before). And, as the head of counseling at one hospital pointed out in that article, “A lot of cancer patients want to be ‘good patients,’ which can mean they don’t want to be whiners or give providers a reason to pull back on treatment; therefore, they may under-report symptoms…. We depend on patients to speak up about their challenges, so we can help them.”

Amen to that.

The NCCN Guidelines for Patients: Distress is pretty good. It's about 40 pages long, and easy to read. It starts with a description of what distress is, and some common situations for cancer patients that cause distress -- things like getting a diagnosis, or finding a new symptom, or learning that a treatment stopped working. We're all different, and we may have other things that add to our distress.

It goes on to give some tools to help you measure how distressed you are, using the "Distress Thermometer." It also gives some advice about how to create a team of professionals to help you manage your distress. (Lots of cancer centers have this kind of service. I don't think they get used enough, given how many people I see online who are experiencing distress.)

The guidelines also provide some help with having a conversation about distress with your healthcare provider. I think this is especially important. I get the sense that lots of doctors assume that, if we are asymptomatic, we don't have much to worry about. It is important to have those conversations with your doctor.

The guide is definitely worth reading, even if you aren't feeling lots of distress at the moment. To be honest, I'm not feeling much, at least not about my Follicular Lymphoma. (Now, as a father of three kids, 20, a8, and 16, plus a crazy dog, I have lots of other things to be distressed about. But my FL? I'm good right now.)

Maybe the time to be aware of these resources is exactly when you don't need them. Look over the guidelines with a clear head, and be prepared for a time when they might come in handy. (Though, of course, I hope that time never comes for us.)

And if you are feeling distressed, then this is a great time to take a look. You might find a source of your distress that you hadn't realized was a problem. Or you might find some resources that you didn't know existed.

But most importantly, I commend the NCCN for putting the focus on patient emotions -- making us and our health providers more aware of what';s going on in our heads and hearts, not just our lymph nodes and bone marrow.

I wish you all peace of mind and body.

Sunday, July 23, 2017

Cancer, Stress, and Social Interaction

The journal Network Science published a fascinating article a couple of weeks ago called "Social Influence on 5-Year Survival in a Longitudinal Chemotherapy Ward Co-Presence Network." It isn't about Follicular Lymphoma, but I think it has some real implications for all cancer patients.

The researchers looked at records from 4691 cancer patients in the UK who received chemotherapy. From those records, they could tell when those patients were in a treatment room with other patients who were also receiving chemo.

They were also able to look at what happened to those patients. And this is the fascinating part -- they found that if someone was in a treatment room with another patient who survived for more than 5 years, then that patient would also be more likely to survive for 5 years. And, likewise, if they were getting chemo in a room with a patient who survived less than 5 years, then they were also more likely to survive for less than 5 years.

The researchers didn't study why this was the case, but they think it might have something to do with modeling behavior and stress. At times of greater stress (and getting chemo is certainly one of those times), having social interaction can be a way of reducing stress. Supporting one another might be a way of making a stressful situation less stressful, and helping one another's survival. Without that stress relief (say the researchers), stress hormones like adrenaline can build up and create problems (since adrenaline prepares you to fight or run away, and you can't really do either in a treatment room.)

I think back to my own time in a treatment room. I got Rituxan, a monoclonal antibody, not traditional chemotherapy. But it was a stressful time anyway. The treatment room at my oncologist's office was kind of large -- it probably held 20 chairs.. It was in a U shape, with a nurse's station in the middle, with glass walls so they could keep an eye on us. When we arrived at the room, it was clear that the nurses wanted to give us some privacy -- we were given chairs far away from one another. So I might be on one side of the "U," and two more patients might be on the other sides of it, and we might never even see one another, let alone interact with one another.

And, to be honest, I was OK with that. I was there for hours, and I mostly wanted to sleep, or read, or watch TV. I wasn't really up for small talk. I usually had my wife with me, though my mom came once, and my kids came to visit me once. I had opportunities for interaction if I wanted them, and I was lucky that my loved ones' schedules allowed them to be there with me.

But now I'm thinking about other people in that big room. It was almost 8 years ago, so I don't remember them. I think some of them had company. But I'm sure some of them didn't. Would they have wanted to talk? It really is a stressful place -- would they have been less stressed if we could have chatted for just a few minutes? Would just a silent nod have helped -- just a small sign that said, "This sucks for me, and I know if sucks for you, and I hope your day gets better when you get out of here." Just something that let someone know how they felt?

It brings up a larger issue -- the importance of social interaction for cancer patients, in general, especially interaction with other cancer patients. I hear lots of sad stories from cancer patients who lost friends, or whose family members fell out of touch after a diagnosis. I think people don't know what to say and do, so they say and do nothing. That has to do some damage, to your mind and spirit, if not your body.

That's what makes support groups so important, whether face-to-face or online. There is almost always someone there who has been through what you have been through, who has felt what you have felt, or who has wondered what you are wondering. It's a huge stress relief.

I've talked before about the support group I found online just days after I was diagnosed. I still check in every day (though I don't post very often anymore.) It was a huge help to me, especially early on. I got support and I learned a lot about Follicular Lymphoma. I learned I wasn't crazy for thinking what I was thinking. There are even more of those groups online now, thanks to Facebook and other social media. And, of course, lots of face-to-face groups to join. (And, of course, I like to think Lympho Bob plays a small role in that, too. I get emails from some of you, and I'm happy to talk about whatever you want to talk about.)

But the point is, interact -- talk to someone, especially someone who truly understands what you are going through. It's a great stress relief, and, apparently, good for your physical health, not just your mental health. I've said it before -- Follicular Lymphoma is an emotional disease as much as a physical one. And sometimes those two things are closer than we realize.