ASCO!

ASCO is almost here!

It's the Cancer Nerd's Christmas!

In case you're new to all of this, ASCO is the American Society of Clinical Oncology, the largest organization for oncologists in the U.S. Every year around this time, they have their annual meeting, where thousands of oncologists get together to talk about the most recent research in cancer and cancer treatments. (If you've had trouble getting an oncologist appointment in late May or early June, it's because your doctor was at ASCO. That's an annoyance, but ultimately a good thing for you. Your doctor is getting educated on the latest research in Follicular Lymphoma.)

I've always wanted to go, but it's expensive to attend (registration, travel costs, hotel, etc.). But last year, because of the pandemic, ASCO was entirely online, and they made the decision to allow patient advocates to attend for free. I applied, and was allowed to attend all of the sessions I wanted to. Not quite the same as being there, but very cool anyway. Every year, I read the abstracts or summaries of the research on FL, and write about some of them here. But going to a full session lets me see all of the detail that I would otherwise miss. So I'm excited to be able to attend ASCO again this year.

And it should be a good year. There are 552 presentations related to Follicular Lymphoma. Obviously, I'm not going to all of them (and they all actually be relevant to FL, anyway). But I'll write about as many as I can over the next few weeks. 

My quick scan of the sessions shows me a couple of trends: First, there will be a LOT of research this year on CAR-T. That's not at all surprising, and I'm guessing research on CAR-T as a first-line treatment for indolent, slow-growing FL will be talked about a lot (rather than CAR-T for aggressive FL, or for relapsed/refractory FL). 

I'm also seeing a whole lot of research on inhibitors of all kinds -- those that are already approved for FL, and some newer ones that might do an even better job, or that are being tested in combination with other therapies. 

There's a little bit of research, too, on bispecifics, which I am very interested in.

Then there are lots of smaller studies about things like Quality of Life that are a little harder to find, and very important, but tend to not get press releases from universities or pharma companies, so they aren't talked about as much. I'll be sure to look for them.

I don't get a sense yet that there is any real big blockbuster presentation this year on FL. At least, I haven't seen any talk about something like that on Twitter, which is where I usually see that kind of conversation. But maybe there will be a big surprise during the meeting (which happens next week, June 4-8). 

I'll start posting some previews soon, and then some descriptions of sessions after they are given next week. 

It's an exciting time -- the Cancer Nerd Christmas, hopefully with lots of presents under the tree.

Pan-Mass Challenge

Hello all. I'm about to ask you for money.

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

Once again, my brother Mike will be riding in this year's Pan-Mass Challenge, so once again I am highlighting his ride and asking you to share his request for donations.

The Pan-Mass Challenge is a bike ride that takes riders all over the state of Massachusetts (which is why it's called "pan Mass" or "all of Massachusetts") in early August. Riders accept pledges from people, and the money goes to the Dana-Farber Cancer Institute in Boston, which conducts research on cancer and cancer treatment. The ride raises millions of dollars every year.

My brother has been riding since 2008 (the year I was diagnosed), and over that time, he has personally raised over $66,000 for cancer research. 

On his fundraising page, my brother explains why he rides every year:

I ride in memory of and support for my many family members and friends that have been cancer patients. I've seen the dedicated staff in action and outstanding care that patients have received at Dana Farber, as well as the advances in treatment that are a direct result of the research conducted by the staff at Dana Farber. Please help me by continuing to support the work of the Doctors at DFMC, and their quest to find a cure.

Please consider making a donation, or passing along this information to others who might be able to. You can make a donation directly on my brother's page.

Thanks for considering it.  

 

 

Mental Health and Follicular Lymphoma

The month of May is generally recognized as Mental Health Awareness Month by a whole bunch of organizations. I think it's worth highlighting.

For a very long time, I've said that Follicular Lymphoma is an emotional disease as much as a physical disease. Every cancer has an emotional component to it, but I think ours is different in many ways. For many of us, we don't need treatment right away. Our symptoms are not physical -- we may not have any at all. But that doesn't mean we don't have to deal with the stress and anxiety of carrying cancer around in our bodies without knowing if or when it will get bad enough to need treatment. That's what I mean by "emotional symptoms." We have those even if we are (physically) asymptomatic.

And something similar happens when we get treatment, even successful treatment. We are told that FL is incurable. And so we might have the joy of hearing about a Complete Response, but then, maybe slowly, maybe quickly, we get the fear and stress again of worrying if (or when) it will come back. More emotional symptoms, even without the physical symptoms. 

I've dealt with both of those situations. I know it's hard.

And the last year or so has made things harder for many of us. I'm sure we've all heard that people with blood cancers have higher risk for Covid complications. So there's the uncertainty of living within a pandemic, not knowing if that cough is from Covid, or spring allergies, or just a dusty house that's been closed up form months. (I lost 10 pounds last April and May worrying about this very thing.)

For some of us, that worry has eased a little bit, as vaccination rates are increasing and the world is opening up a little more. And for many others, that hasn't happened yet. And even for those who have been vaccinated, there might be that little bit of worry that maybe the vaccination isn't going to work as well as it should. (Again -- I've felt all of these things. When I say "some of us," I'm usually including myself.")

As cancer patients, and especially as Follicular Lymphoma patients, I think we get used to all of this uncertainty after a while. Maybe not "used to it" -- but we learn to live with it, even if we're not happy about it. We find strategies to deal with it. We manage to live our lives, even with the uncertainty, and the stress and worry and fear.

I'm not saying all of this to add to the worry. Just the opposite. I'm saying it to remind you that all of the things you feel are not things that you just you feel. You're not the only one. 

That always brings great comfort to me. I can tell a story, and even if the details of the story are completely my own, and no one has ever experienced that exact same thing, readers will understand the feeling that I had. I'm not alone, and neither are they. There's comfort in being able to say, "Wow -- someone else feels that way, too. It's not just me." 

And that brings us back to Mental Health Awareness Month.

I always think "awareness" months are a little strange, because they tend to focus on the people who are already very aware of the thing being highlighted. 

But sometimes it's good to have the reminder. Mental Health is one of those things.

So while FL patients deal with so much uncertainty, and we've probably all developed strategies for dealing with it, that doesn't mean we don't get overwhelmed sometimes.  The worry and the anxiety can get in the way of living our lives the way we'd like to.

If that's happening, then it's time to do something about it.

Maybe it's as simple as talking to a partner or friend. Sometimes just using words to describe our worries is enough to make them better.

Or maybe it would help to talk to another FL patient. I'm a big believer in support groups, even online support groups. It's that "Wow -- someone else feels the same way I do" thing. (And if you can't find a a support group, feel free to email me. I'm always happy to listen.)

And maybe that's not enough. Maybe you need to contact your oncologist as ask if her office, or the hospital they are affiliated with, offers some kind of help. A counselor or social worker to talk to, or a complementary medicine practice that can offer advice.  Or maybe it's gotten to the point where a prescription would be helpful. There's no shame in that -- no more than taking medicine for a physical problem. 

The big point is -- this is a good month to remember to take care of your mental and emotional health. It's just as important as your physical health, and plays a s big a role in your quality of life. 

Stay well, everyone -- physically and mentally.

  

Follicular Lymphoma Case Study

Targeted Oncology has a short video series (8 videos, each no more than 5 minutes) featuring an oncologist discussing a particular patient with Follicular Lymphoma and how she has treated him (and would treat him in other situations).

I like video series like this. It gives me a sense of how an oncologist would treat FL in the "real world." Sometimes I read so much about possible treatments and early clinical trials that I forget about what is actually available right now. So it's nice to hear an expert talk about how she handles things.

That expert is Dr. Kami Maddocks from Ohio State University. The patient she is discussing is a 74 year old man who had complained of fatigue and weight loss for 6 months. A scan showed some swollen nodes and a biopsy showed stage 4/grade 2 Follicular Lymphoma. The first video in the series talks about his case and his initial treatment -- R-CHOP followed by Rituxan maintenance. He had a Complete Response, but then a recurrence 24 months later. He was given Rituxan and Bendamustine for his second treatment, with more maintenance. 

Then 12 months later, he complained of more symptoms. He was re-staged and found to have grade 2 FL, and was given Idelalisib, an inhibitor. 

From there, the videos talk in more general terms, with this patient being used as an example -- how oncologists can use things like FLIPI to help guide them. 

The second video talks more about first-line treatment options, straight Rituxan to Immunochemotherapy (like R-CHOP or R-B, or Obinutuzumab in place of R). [No mention of R-squared as a first-line option, which is interesting.]

The third video looks at Maintenance, and when it is (or isn't) a good idea.

The fourth video looks at how Dr. Maddocks monitors patients to make sure the FL hasn't come back -- how often to meet with the patient, when to do blood work, and how often to order a CT scan. 

Finally, the fifth video discusses options for second-line treatment, generally an Immunochemotherapy, and why she usually likes to hold off on using R-CHOP (because it's useful if a patient transforms, but can only be used once, because it can cause heart damage).

The sixth, seventh, and eighth videos get into how she handles treatment if the second-line treatment failed (usually with an inhibitor), and what factors she considers (such as the health of the patient), and then some discussion of where research is headed for FL (including CAR-T and bispecifics).

And hey -- here's a nice quote: "Lastly, as I mentioned that the median OS of FL is over 20 years, so when we’re considering different therapies, it’s also important to think about the toxicities of these therapies in the quality of life for a patient."

I'll repeat the good part: "The median Overall Survival of Follicular Lymphoma is over 20 years." 

I think this is a pretty good summary for anyone at any stage of the disease experience, to give a sense of what the next steps might look like. For me, I feel less stressed if I know what my possible path might be. That possible path changes all the time, with new research and new treatments. That's another reason I like videos like these -- they help me keep up with what's going on.

Also -- each video has a transcript below it, in case translation is a concern.

I hope you enjoy this series. I did.

 

Can Covid-19 Cure Follicular Lymphoma?

If I was trying for a click bait title to get you to read, I don't think I could do much better that "Can Covid-19 Cure Follicular Lymphoma?"

 But it seems like it might actually be true. A Follicular Lymphoma patient in Italy had his FL disappear after he was diagnosed with Covid-19, and the only explanation that his doctors can come up with is that the Coronavirus did the job. They write about it the European Journal of Nuclear Medicine and Mollecular Imaging in an article called "Complete remission of follicular lymphoma after SARS-CoV-2 infection: from the “flare phenomenon” to the “abscopal effect”."

The article was published in February, but it was discussed in a piece in the online magazine Slate about a week ago. The Slate piece does a good job of explaining things, but there are some interesting issues I think are worth highlighting.

Before getting into any of that, a couple of reminders:

The risks that come with getting Covid far outweigh the remote possibility of the virus helping anyone.

That possibility is extremely remote -- the medical journal article looks at a single person's experience, and we all know that one person's experience with FL says nothing about our own experience.

But it's a fascinating situation.

The FL patient being discussed is a 61 year old man in Italy. He was diagnosed with FL in August 2019, and began Bendamustine and Rituxan, finishing treatment in February 2020. In June, a scan revealed that the cancer appeared to be growing. But a biopsy came back negative. In September, another scan and biopsy also came up negative -- no cancer, and no additional treatment since the B-R.  But he had been diagnosed with pneumonia in both lungs, brought on by Covid.

They considered some possible explanations for this, including possible spontaneous remission, which is rare, but does happen with some FL patients. The explanation they decided on was the Covid killed the cancer cells.

The Slate article gives some history on how researchers have (for centuries) tried to use bacteria and viruses as ways to kill cancer cells. Viruses might have an easier time killing cancer cells than killing normal cells. Normal cells, if attacked by a virus, will send a signal to the immune system, and immune cells will attack the virus. But cancer cells don't signal the immune system, since the immune cells might attack the cancer cells. So without the immune system to come to the rescue, cancer cells just might be more vulnerable to the virus. 

An immune response to a virus can also trigger massive inflammation -- the "Cytokine Storm" from Cytokine Release Syndrome that is a potentially dangerous side effect of CAR-T. But that inflammation caused by the immune system's huge response (a danger for Covid patients as well) might result in immune cells killing both the attacking virus and the cancer cells.  

The patient's doctors considered spontaneous remission as well as the possibility that the B-R was continuing to do its job. But they ruled those out because the cancer seemed to get worse before it got better. Those explanations wouldn't have resulted in that -- the cancer would have just kept getting better without first getting worse. That getting worse is called a "flare phenomenon" and its common to immunotherapy, but not traditional chemotherapy (or immuno-chemo like B-R).

As the Slate article points out, this single case doesn't mean much for all Follicular Lymphoma patients. Plenty of blood cancer patients have gotten Covid, and for many, the outcome was death or serious illness. Covid isn't going to cure FL.

But it does say something about the possibility of using viruses to treat cancer. The trick, of course, is to find a way to control the virus so it only affects cancer cells and doesn't grow on its own and attack normal cells. Like any cancer treatment, it's all about the balance between effectiveness and safety. That's a tough thing to pull off with a virus.

The other lesson I'm getting from this doesn't have anything to do with the virus as a cure. It has ore to do with the explanations that were rejected. Follicular Lymphoma seems especially open to spontaneous remission (it goes away all on its own) and spontaneous regression (it gets better on its own, with nodes shrinking, even if the lymphoma doesn't go away completely). I wrote about this in 2013, and that post is still on the most read on the blog.

I think it's important for us all to remember that FL often behaves differently than other cancers. It does sometimes become more aggressive, but it sometimes lies dormant for months or years, or gets worse and then gets better on its own. It's easy to say that the FL is behaving a certain way because of something we did or didn't do (exercise a certain amount or a certain way, or eat a certain food, or avid a certain food). Those actions might affect our immune system in some way, and that might affect our FL (like what happened with the Covid patient). But there isn't a lot of evidence that those changes will cure FL. If anything, they might contribute to a temporary change, but it's also possible that eating a lot of broccoli just happened to coincide with a spontaneous regression that would have happened no matter what someone was eating.

(I like to remind people in support groups, who ask me what I eat that has kept me from needing treatment for so long, that about once every week or so, I eat a hot dog and french fries from my favorite local joint. I go there so often I actually have a Christmas tree ornament from them. My steady injection of nitrates and trans fats probably isn't keeping cancer away, and I don't think a steady diet of kale and turmeric will do it, either. Cancer and food is much ore complicated than that.)

I'm sure none of you were planning to get Covid deliberately in an effort to jump start your immune systems. And I hope you'll trust science enough to do what you can to stay safe -- keep away from others, wear a mask, and with your doctor's advice, get a Covid vaccine when you are able to.

Stay safe, everyone.

"Types of Lymphoma Papers"

I hesitate to post this, because it's pretty much the nerdiest thing I can post. You may not enjoy it as much as I did. But I proudly call myself a Cancer Nerd, so here goes.

There's an online comic strip called XKCD that makes humor out of science. They often use science as a way of making commentary about politics or society. They have made lots of comics lately about Covid-19, and especially about the frustrations that come when people don't believe in science. 

(I'm going to assume that everyone reading this is pro-science, given what I write about.)

Anyway, a few days ago, XKCD created a comic called "Types of Scientific Papers." It's basically making fun of how very few different kinds of science research articles get written. The details of the research are all very different (and important), but they all seem to fall into a few basic categories. Things like:

• "My Colleague is Wrong and I Can Finally Prove It"
• "What Are Fish Even Doing Down There"
• "Check Out This Weird Thing One of Us Saw While Out for a Walk"
• "We Scanned Some Undergraduates"
  

If you read enough scientific papers, you'll get the joke pretty easily. If you don't read a lot of them -- hey, I warned you that you might not enjoy it as much as I did.

But what I enjoyed even more was Dr. John Leonard's version of all of this. Dr. Leonard is a Lymphoma Rock Star who does research, teaches medical students, and sees patients (including at least one of you readers). He's made a few appearances in the Lympho Bob blog, including the Leonard List of 10 presentations that excite him every year at the ASH conference every December.

Dr. Leonard decided to create his own version of the XKCD comic called "Types of Lymphoma Papers":

Again, if you've read enough of these, you see the humor (and I probably read 2 or 3 medical journal articles about Lymphoma or cancer every week).

Some of my favorites from Dr. Leonard's revised comic:

• "Our Version of IPI, FLIPI, MIPI"
• "How to Cure Lymphoma in a Mouse"
  
• "R-CHOP + X"
• "A New 'Chemo-Free" Regimen
• "Our CAR-T Cells are Better than Your CAR-T Cells"
  

But my favorite has to be "Our BTK Inhibitor (PI3K Inhibitor) is Better than Other BTK Inhibitors (PI3K Inhibitors)." Because, really, it seems like there's a new inhibitor undergoing FDA review every other week.

I'd add to Dr. Leonard's comic "There Might Be a Benefit to Maintenance, Or Maybe Not" and "Watching and Waiting Isn't Worth It, Or Maybe It Is."

It's the same joke as the XKCD comic -- the deatils change, but we see the same basic kinds of research articles over and over again. 

As I said, the Cancer Nerd in me finds all of this very funny. 

Bit it says a lot about how science works -- slowly, incrementally, building on what has come before, little by little. There are very few truly groundbreaking, original ideas out there. It took about 20 years for Obinutuzumab to come around as an improvement over Rituxan. And we've has 4 different PI3K inhibitors approved for FL in the last few years.

And that's OK. Because when something new does come around, it gets studied and played with and improved on by lots of other researchers who see its great potential. And that's good for all of us.

In the meantime, I (and any other Cancer Nerds) can enjoy a little chuckle.

And if you didn't find it funny, I'll give you a little tease about my next post: Can Covid-19 actually cure Follicular Lymphoma?

(If you're too impatient to wait for an answer -- no, it probably can't. But there's a really interesting medical journal article about the possibility. I think it falls under XKCD's "The Immune System is at it again.")