Interview with Dr. John Leonard

Patient Power has a new video interview with Dr. John Leonard from Weill Cornell Medicine. Dr. Leonard is asked about important Lymphoma research reported at ASCO and the European Hematology Association's annual meeting. It's about 20 minutes long, and worth the time.

Some highlights (in my opinion):

The big news in Follicular Lymphoma research these days is the RELEVANCE study, which looked at how R-Squared (Rituxan plus Lenalidomide/Revlimid) compared to Rituxan plus chemotherapy.  As Dr. Leonard points out, the trial tried to measure superiority -- in other words, the researchers hoped to show that R-squared was better than R-chemo. In the end it did not, but it did seem to show that R-squared had about the same effectiveness as R-chemo, with different side effects.R-squared seems to be a good alternative to R-chemo. (The Lymphoma community seems hopeful about all of this, though they recognize that the trial did not meet its endpoint.)

What came next is a great example of why I like Patient Power so much. Dr. Leonard was interviewed by Andrew Schorr, Patient Power founder, and a 20+ years survivor of CLL, another slow-growing blood cancer.

Schorr asked about expenses. Chemo is often over and done with after a period of weeks or months. But some newer treatments are taken daily as pills, and over time, they can be more expensive than chemo. Dr. Leonard recognized that it's a major issue. I've heard the phrase "financial toxicity" to describe this -- when researchers give the results of a trial they are required to report on physical toxicity -- the side effects that come with the treatment. But we rarely hear about the financial side effects. I love that Andrew Schorr brought that up.

Schorr also asked about CAR-T, one of the other topics that Lymphoma folks have been excited about lately. Dr. Leonard pointed out that, right now, only acute Lymphomas have seen trial results (though these include aggressive Transformed FL). He thinks they are very helpful for some patients (they have certainly been helpful for Ben and for William's wife -- I've mentioned them before, and you can read about their experiences and more on CAR-T at the CAR-T and Follicular Lymphoma Blog.

Despite their successes, Dr. Leonard tells his patients that about 1/3 of people who take CAR-T have a durable response, lasting more than a year. Another 1/3 have a shorter response, less than a year. And about 1/3 don't have a response. And he also makes clear that there are some potentially serious side effects. And, more importantly, he considers this the "1.0 version" of CAR-T, and thinks it will keep improving as researchers learn more about it.

Schorr then asks Dr. Leonard what he would tell a brand new FL patient if the patient asked if he was hopeful about the future.

Dr. Leonard, I am happy to say, is very hopeful about our future. He has seen outcomes improve over the last few years, and we still haven't seen long-term results for some more recently approved treatments. He expects things will keep getting better for us (and he encourages us to pay attention to clinical trials to see if there are any that might be appropriate for us, and move us all along).

Finally, Schorr asked what kinds of questions a new patients should ask an oncologist. Dr. Leomard has some good advice, including asking about what the goals of the treatment might be.

I encourage you to watch the whole video to see what else he has to say.

The Oncologist Blues

I had a rough day Friday. I woke up in a bad mood, and it got worse during the day. I'm trying to find an new oncologist, and that search turned out to be a part of my bad day.

My first oncologist, Dr. R, was great. I saw him for about seven years, and we got along very well. We listened to each other. But he moved out of state to teach in a medical school, and the practice assigned me a new one, whose office was closer to my home, so I went with it.

But Dr. K was not great. He wouldn't listen, and when I had questions, he wouldn't give me answers. He ordered a PET scan that he admitted I didn't need, and which I refused to have. I was looking for a new oncologist when he retired.

The practice assigned me Dr. V, who was great. He is a lymphoma researcher, and we talked about some of the the research that got him excited. I enjoyed our visits. And then he was offered his dream job at a major research hospital, and he left.

The last time I saw him was in February. I emailed Dr. R, and asked him for a recommendation for someone new. He recommended Dr. L, and I looked at the website of the hospital where he works (the office I go to is affiliated with the main hospital), and Dr. L looked great. He's a researcher, works with medical students, and he had Dr. R's recommendation.

I held off for a while before I called to make an appointment. My disease has continued to be stable -- Dr. V said I could go a year between visits if I wanted to -- and I wasn't in a rush.

But over the last week or so, I've been thinking a lot about cancer (more than usual, for someone who reads and writes about it every day).  All that thinking made me decide it would be a good time to make an appointment with Dr. L. An appointment this summer would put me in the 4-6 month range that I've kept between appointments, and that I'm comfortable with.

That's when the problem started.

I called Dr. L's office to make an appointment at the research hospital where he sees patients. I was put on hold for a about 10 minutes, and then someone got back to me and said I should call the office near my house, since Dr. L was now seeing patients there once a week.

Perfect. Close to home is always nice. I called and was put on hold again. When someone finally answered, I was told that someone else would call me back. When someone did, 20 minutes later, I was told that I would need to call the main hospital again (the one I had called originally).

OK -- some miscommunication, but that's fine. I called the number I was given, and the person who answered said "Who gave you this number?!" very suspiciously, like we were in a movie. I was put on hold again, and after 10 minutes, I was told that Dr. L doesn't see lymphoma patients (which is not what the hospital website says, or what Dr. R told me). I was transferred back to the other office and offered an appointment with a general oncologist.

My goal is asking Dr. R for a recommendation was to see a lymphoma specialist. I really liked being able to have those kinds of conversations with Dr. V. A general oncologist is fine -- I'm sure I'll get good care -- but my needs are kind of specific at this point.

I took the appointment, though I was extremely frustrated. The whole thing took over an hour, and I was transferred between the two offices three times. I was already having a bad day, and the experience put me in a big funk.

Part of the frustration was with the system, and I don't think that's going to get any better any time soon. No coordination between offices that are supposed to be part of the same hospital system, and apparently out-of-date information on their website.

And part of the frustration is personal. I'm on my fourth oncologist in four years. I'd like one that I can have a relationship with, and at this point, I know just what kind of a relationship I want that to be.

I also know that I might be unrealistic in thinking I can find the perfect oncologist -- and the perfect hospital that he or she might work in. And I know how lucky I am to even have a choice. And part of me says I should stop whining about it all, and that other people have it worse.

But just because other people have horrible experiences, that doesn't mean we as patients should settle for "it could have been worse." Good care should be the standard for everyone.

So, for now, I have an appointment for next month. I'm feeling better today, and I'm still deciding whether or not to take it, or to keep searching for an oncologist that I think I'll be happier with.

Thanks for listening.

Hope is a Good Breakfast

There's been a lot in the news over the last few weeks about a woman who had her breast cancer eradicated by a new type of Immunotherapy. You may have seen it -- if you're like me, the word "cancer" in a headline catches your eye.

My wife saw an article about it before I did, and read it to me. A few other people have pointed it out to me.

It's excellent news, for the woman and for the rest of us.

But whenever I see something related to cancer that's getting so much attention, I have the same reaction -- first a rush of hope, then a jolt of skepticism. Anything that's getting that much hype needs to be examined a little more carefully.

Here's the line in one of the news reports that stopped me: "Six other patients in the trial (out of 45 total, with various types of cancer) also saw their diseases go into remission after participating in the trial."

7 out of 45? That's a rate of 15%. Not exactly a number that should get anyone excited.

The original article in the journal Nature Medicine actually focuses on just this one patient. The authors are certainly not trying to hide that. They present the patient as one example of how this approach to Immunotherapy might work.

(And it's a very cool approach. This type of Immunotherapy tries to take advantage of immune cells hat are inside the tumor, but aren't attacking the tumor. The immune cells are removed, as are some of the tumor cells. The tumor cells are screened for mutations, and then the immune cells are checked to see if they will recognize those specific mutations. So, like all Immunotherapy, the immune system is being trained to recognize cancer cells that it wasn't able to recognize before.)

The problem I have with all of this isn't the article, or the research, but the way it all gets reported and consumed. Too much attention paid to splashy headlines and not enough to the details -- for both the sites that present the articles and the people who read them.

That's kind of inevitable in the Internet Age, I guess. Sites want to be read, and people want to read happy things.

And as a cancer patient myself, I certainly don't blame anyone for grabbing onto a headline that gives them Hope. You don't have to read this blog for very long before you see me use the word "Hope." It's important to me.

But Hope is about possibility, not reality. Hope is about what we want to happen, not what is happening.

That sounds way more negative than I usually sound about things, but I need to remind myself every now and then to slow down. I am prone to being hopeful. When I write about new treatments being tested, I almost always focus on the good. I have to remind myself to write about bad side effects and reasons why things might not work the way we would like them to.

"Hope is a good breakfast, but a bad supper." (I think Francis Bacon said that, and if anyone knows about good breakfasts, it's someone named Bacon.)

That doesn't mean we shouldn't be hopeful. Hope keeps me going. And I'm not going to stop feeling that way.

Ian Fleming did Francis Bacon one better: "Hope makes a good breakfast. Eat plenty of it."

ASCO: Patient-Reported Outcomes

I'm still looking at research from ASCO, but here's another one that I found really interesting: a study of Patient-Reported Outcomes from cancer patients using Apple Watches and emojis.

Let me say, first off, that this research caught my eye because the presenter at ASCO was Dr. Carrie Thompson of the Mayo Clinic. If I haven't already named her so (and, as we all know, I have the power to do this), I think we can safely say that Dr. Thompson is a Lymphoma Rock Star.

Her research focuses a lot on Quality of Life. As great as it is to have Rock Stars who are doing research on CAR-T and Immunotherapy, a cancer treatment doesn't mean much if researchers don't consider Quality of Life. A treatment might add months or years to Overall Survival, but is it really an improvement if the treatment also causes problems that make it heard to live our everyday lives. Every cancer treatment has side effects -- we can't avoid them -- but not every trial seems to pay attention to Quality of Life. if nothing else, research like the kind that Dr. Thompson does helps remind the lymphoma community that Quality of Life has to matter.

The research she reported on at ASCO was part of a panel that looked at Patient-Reported Outcomes (PROs). A PRO, as the name implies, is a report that comes directly from the patient on how the patient is doing. In my own case (and probably yours), an oncologist can take blood and analyze it, feel around for swollen nodes, and conduct other tests. Those aren't patient-reported. If he asks me how I'm doing, now we're getting a little closer to a PRO. But for researchers, PROs have to be a little more formal than just asking how a patient is doing. 

The research that Dr. Thompson and her colleagues did was meant to gather some PROs, but also to see  how easy it would be to gather them. Patients (with several types of cancer, not just Lymphoma) were put into three groups, with each group reporting on how they were doing, answering questions on issues like physical and mental health, fatigue, sleep disturbance, social/role function, and anxiety.One group answered weekly questions with a paper survey, one group used an app on an iPhone, and one used the Apple Watch. Groups 2 and 3 responded using emojis (cartoon faces that represent how they feel, like 😀 😌 😐 😑 😟 😢  -- not sure what their scale was).

The type of data they gathered looked at Quality of Life. For example, patients were asked how physically active they were . The Apple Watch allowed the researchers to compare, for example, the number of steps that patients took each day. They found that patients who took more steps (and so were more physically active) had less fatigue (a very common symptom for patients who are going through treatment, or who have finished it) and slept better, among other things.

A watch or the iPhone app might make reporting outcomes easier (I hate to say it, but I use my phone more and more every day), and the easier it is to gather that info, the more PROs we have might available for researchers.

And, of course, the more PROs available to researchers, the more they can hear the patient's voice. 

And, of course, the patient's voice should matter. A lot.

I hope we'll keep seeing research that uses PROs, values patient voices, and considers Quality of Life and how to measure it. (If you have the opportunity to participate in this kind of research, you should absolutely do it -- the only side effect seems to be that your phone battery might drain a little more quickly than you're used to.)

Betalutin Gets Fast Track for Follicular Lymphoma

The RadioImmunoTherapy Betalutin has been given Fast Track status by the FDA. This could be good news for those of us with Follicular Lymphoma.

Fast Track status means the FDA thinks the treatment will help with an "unmet medical need." The status is given to treatments that are fairly early in the development process, and the FDA will give some extra advice during the development, and might give it a faster review if and when the times comes.

So it's good news, but it still has a way to go.

The "unmet medical need" in this case is that Betalutin will be targeted at FL patients who have had at least two other treatments that have stopped working or didn't work in the first place (Relapsed or Refractory). The FDA agrees with the makers of Betalutin that there aren't enough options available for this group of patients.

Betalutin is a type of RIT. I wrote about it a few months ago -- you can watch a rally nice video here that explains how Betalutin works. It targets the protein CD37, which is on the surface of B cells (the blood cells that turn cancerous in Follicular Lymphoma. Many treatments for FL involve Rituxan, which targets CD20. When that stops working (so the idea goes) the Betalutin can target CD37, and get to those cancer cells that Rituxan couldn't get to.

As that video shows, Betalutin can attack the cells in a few different ways, and the radiation it emits reaches only about 40 cells away from the target cell -- not a very far distance -- so there isn't as much damage to surrounding (possibly healthy) cells as there might be with other treatments.

All of this sounds great, and the early trial results that led to the Fast track are (of course) promising.

But there's still one big problem -- will anyone be able to use it?

The RIT Bexxar was basically discontinued because it was too hard to administer, and the RIT Zevalin is way under-used. (I won't get into the details here, but you can scroll down the Lymphomation RIT page for more on why this is the case -- it's not because it's ineffective. In the U.S., it has to do with rules that determine who is allowed to administer it.)

That's a pretty big hurdle to get over. When the Fast track was announced, there was some talk online about this issue. As good as it might be, and even if it gets approved by the FDA, will it be as underused as Bexxar and Zevalin?

A Lympho Bob reader named Bjorn, who is a big fan of Betalutin, posted a document from Betalutin's manufacturer that lays out their strategy for getting the treatment to more patients in the U.S.

I understand the strategy, but (as I am happy to remind you) I am not an oncologist, a cancer researcher, or an investor in the biomedical sector, so I have no expertise to say whether or not the strategy will be successful. (Though I'm happy that they have one.)

I hope it is successful. I hope the trials show that Betalutin is safe and effective, and easy to administer, and meets the "unmet need" that some Relapsed/Refractory patients have. I have been fascinated by RIT since I was first diagnosed. It makes sense as a treatment, and Betalutin makes sense as a new approach to RIT.

Let's keep on hoping. We'll hear more about this in the months and years to come, I'm sure.

ASCO: Vitamin D and Follicular Lymphoma

Interesting research from ASCO: A look at whether Vitamin D helps extend Event Free Survival for Follicular Lymphoma patients.

It's not really "research" yet, since there are no results. But there was a presentation at ASCO on the study,which is called ILyAD (Indolent Lymphoma and Vitamin D). Clever name. I'll do my best to resist any puns on the Iliad, that great Ancient Greek poem about the Battle of Troy.

But bad puns are kind of my Achilles' heel.

(Dang it. Sorry.)


In all seriousness, the abstract for the presentation is called "ILyAD (Indolent Lymphoma and Vitamin D): A phase III double blind, prospective randomized trial to evaluate the supplemental effect of vitamin D on progression-free survival in patients with low tumor-burden indolent non-Hodgkin lymphoma treated with rituximab therapy."

It builds on some research that's been done in the last few years that shows that there might be a connection between low Vitamin D levels and Overall Survival, and Event Free Survival within 12 months. I wrote about it last fall, and if you want to see more, you can use that cool Search feature that I moved to the top of the blog and enter "Vitamin D.")

The ASCO research describes a phase III clinical trial. It is still recruiting, if you're interested -- you can find more about it here.

Basically, the researchers are looking more directly to see if there is a connection between Vitamin D and effective treatments. About 2/3 of the patients will get Rituxan (4 weekly doses), plus 2000mg of Vitamin D every day. The other 1/3 will get the Rituxan, but no Vitamin D. After 13 weeks, patients will be evaluated, and if the treatment isn't working, they'll be taken off the study to try another treatment. But if there is a response, they will continue for 3 more years to see if the Vitamin D group does better.

"Does better" will be measured by Event Free Survival, with an "event" being no response at week 13, having the disease get worse, needing a new treatment, or dying.

Again, the study is actively recruiting now, so there are no results to report.

But I think there is a big lesson to learn from it.

Vitamin D is one of those things I read a lot about -- there are many people who think it has some miracle properties that will take care of a long list of health problems. I will freely admit that I take Vitamin D every day. Every time I tell a doctor that I take some, or my wife tells a doctor the same thing, we get a thumbs-up. We hear it often enough to think we're doing a good thing by taking Vitamin D.

Do I think I've gone over 8 years without treatment because I take Vitamin D every day?

I have no idea.

And that's the point.

Without rigorous study of treatments, we have no idea what works.

A few days ago, a friend of mine who is a breast cancer survivor posted a link on Twitter, a story about a social media personality who has been saying that her veganism and her belief in God cured her cancer. Unfortunately, she died when the cancer came back.

I'm not going to link to the article, because it's a little too gleeful in its "I told you so" tone. That's not helpful to anyone.

Being vegan can be a good thing, especially if it gets you to pay more attention to what you are eating, and it gives you incentive to be healthier.

Belief in God is also a good thing, especially if it brings you comfort and helps you pay more attention to the needs of others.

But neither of them has been proven to cure cancer. Not in any rigorously tested way.

Same with Vitamin D. I believe in miracles. I think there are things that can't be explained.

But for every 1 in a million miracle, there are 999,999 instances where the miracle didn't happen.

So if I have a choice between a miracle and a treatment that induced a response in 65% of patients, I'm going with the 65%. Much better odds.

I'm hoping this research on Vitamin D does show us something. Wouldn't it be great if we could make treatments more effective by taking something that costs about 5 cents a day?

But we need the research to show us that it's really true.

That, to me, is the lesson.

(Also, consider participating in a clinical trial when you need treatment. Otherwise, there are no lessons for anyone to learn.)

ASCO Follow-Up: R-Squared

Well, ASCO is over, and there are 3 or 4 big stories about Follicular Lymphoma that people are talking about.

The biggest, based on what I have seen on Twitter and other places, is the RELEVANCE trial -- the comparison of R-squared and Immunochemotherapy.

I wrote about this a week ago. R-Squared (Rituxan + Revlimid/Lenalidomide), followed by Rituxan Maintenance, seemed to work as well as Rituxan + Chemo (R-CHOP, R-Bendamustine, or R-CVP), followed by R Maintenance. Both treatments had side effects, though they were different.

I thought it was interesting that the researchers remained fairly objective in their abstract, not crowing about the results, the way some abstracts do (whether justified or not). I was very curious about how the results would be talked about after the presentation, when more data would be presented.

I would say, overall, the reaction was very favorable toward R-Squared, though the Lymphoma community is keeping its excitement under control.

Dr. Nathan Fowler, who presented the data at ASCO, spoke about the results in a video for Lymphoma Hub. He sums things up by saying he is "hopeful" that they showed that a non-chemotherapy regiment can give the same results as traditional chemo.

Dr. Fowler is quoted in an ASH Clinical News article as saying “These results show that R², an immunomodulatory approach, is a potential first-line option for patients with FL." The article also says that Dr. Fowler added that "the survival data of this analysis was immature and requires longer follow-up. The reliance on physician’s choice of chemotherapy in the R-chemo arm also may have confounded the findings."

Targeted Oncology provided a similar quote from Dr. Fowler: "Rituximab/lenalidomide was not superior to rituximab/chemotherapy, based on mature CR/CRu analysis. It is very important to know, as we might expect, there are differences in safety profiles between arms," said Fowler, the lead investigator and an associate professor at The University of Texas MD Anderson Cancer Center. "These results show that lenalidomide/rituximab, which is a novel immunomodulatory approach, is a potential first-line option for patients with FL who require treatment."

You get the picture.

I like that both the researcher and the people reporting are not getting ahead of themselves with this. R-Squared has been talked about for a few years, with lots of Lymphoma Experts very excited about its potential. So it's good that they remain excited, but aren't ready to declare this success as definite just yet. We can be "hopeful" that the combo "could" have "potential" as a non-chemo option for Follicular Lymphoma patients.

So, what does this mean for us as patients?

At the moment, nothing. And that's a good thing.

As the ASH Clinical News article pointed out, the results are promising, but still early. The Survival numbers are good, and just about the same, but longer-term numbers would make an even better comparison, and I'm sure we'll see those soon.

And as that same article points out, the comparison between R-Squared and R-chemo is a little deceptive, since the R-chemo group had 3 possible chemo combos to choose from, and each individual patient's doctor in that group got to choose which chemo to give the patient. This messes with the results a little, since the treatment choice wasn't random, and the doctor could have (and probably should have) chosen the chemo that would work best for that patient.

So we wait again, this time to see what the folks running the trial will do next. If the R-Squared combo is submitted for approval as a front-line (first) treatment for FL, and it gets approved, then we'll have a whole new round of speculation about how many patients and doctors will opt for a non-chemo option over traditional chemo.

I'll certainly be watching to see where it goes from here.

More ASCO follow-ups coming soon.

Cancer Survivors Day

Happy National Cancer Survivors Day!

The NCSD Foundation designates the first Sunday in June as Cancer Survivors Day. It's a day to celebrate being a survivor, and they call a survivor “anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

So the day you are diagnosed, you become a survivor.

"Survivor" is a funny word. I know some cancer patients don't like it -- it just doesn't feel right to them.

But others love it, because it reminds them of how far they have made it, even if they have farther to go.

I wrote a piece for Blood-Cancer.com called "The Words We Use" that talks about what the word "survivor" means to me, especially compared to another word.

Take a look.

And do something to celebrate today. You made it.