LRF Webinar on Follicular Lymphoma

The Lymphoma Research Foundation is holding a webinar on Follicular Lymphoma on Tuesday, August 3, from 2:00 to 3:00pm ET (11:00am PT). You can register for it here. It's free, though you'll end up on the LRF email list, which isn't necessarily a bad thing.

The webinar is called "Update on Follicular Lymphoma," so I suspect you'll hear about the newest information of FL treatments. The program schedule says the topics will be
•    Overview of Follicular Lymphoma
•    Treatment Options for Newly Diagnosed
•    Watch and Wait
•    Emerging Treatment Approaches
•    Question and Answer Session 

I've listened in on a few of these, and even with all of the reading and watching and listening I've done in 13+ years, I always come away with something new that I have learned. The Question and Answer session can be especially valuable -- you'll have an expert who might answer your question.

And the expert this time is Dr. Sarah Rutherford, who teaches oncology and hematology at Weill Cornell Medicine in New York. Her recent research is on the use of PET scans during R-CHOP to see whether the treatment has been successful enough to be stopped earlier than planned. (Dr. Rutherford has also done some research on why surveillance scans are less useful than they might seem.) Cool stuff. 

So it should be a good session.

I have signed up for the webinar, and I encourage you to as well, because even if you can't make it during the scheduled time, they often post a recording online a day or two later, and send a link to people who signed up, so you can watch it (or re-watch it) when it's convenient. 

Hope you enjoy the webinar.

How Onclogists Feel About Telemedicine

Interesting article in the Journal of Clinical Oncology: "Oncologist Perspectives on Telemedicine for Patients With Cancer: A National Comprehensive Cancer Network Survey." I have to say, I have mixed feelings about telemedicine and virtual visits with oncologists, so I was very interested in how our doctors feel about them.

And for the most part, they feel pretty good about them.

The article reports on a survey of 1,038 oncologists from 26 cancer institutions in the United States during summer 2020 (at the height of the Covid-19 scare, as things were locking down severely and cases were increasing dramatically). The oncologists were asked 20 questions about how they use telemedicine (meeting with patients either by phone or by video), how much more more often they were doing so than they were before the pandemic, and how they felt about it. (You should be able to see the questions here, if you're interested.)

 The results: 88% said that meeting a patient by video was the same or better than an office visit, and 805 said using the phone was the same or better than the office. That seems very high, but it gives a good indication of how positive the oncologists see telemedicine. 

However, when it came to establishing a personal connection, only 24% thought video was the same or better, and only 7% thought phone was the same or better. And that makes a lot of sense. It's certainly the same with much of the communicating I've had to do during the pandemic. Video is better than phone when speaking to a loved one, but neither is as good as being in the room. And when it comes to meeting someone new and establishing a connection, that's especially true. A small gesture like a hand on the shoulder from the doctor is really missed.

So while the oncologists might feel a certain way about connecting with patients, more importantly, did meeting virtual cause problems for the patient that might have been found in a face-to-face meeting? Only 6% felt like that happened occasionally, and 93% said it never happened or happened rarely.

In the end, the oncologists estimated that about 46% of all patient visits could be handled by phone or video.  

And that makes sense, especially for follow-up visits, like the kind of many of us with Follicular Lymphoma get after treatment. (I'm thinking especially of the kind of 6 month appointments I have these days, when I don't have problems or specific concerns to talk about or get checked out.)

For many of us, that might be a blessing. For many of us, we need to travel a bit to get to our oncologist. Maybe it might be easier to get a blood test near where we live, and have the results sent to the oncologist, and then talk about them during a phone call or Zoom meeting. That might make things easier for everyone.

On the other hand, there are potential problems, too. Not every patient has the kind of access to technology that would make these visits helpful. And, at least in the U.S., it's possible that insurance companies will pay for a telemedicine visit and not a face-t-face visit for certain kinds of issues, when the patient could use the reassurance of seeing and talking to the doctor.

As I said, I have mixed feelings about telemedicine. I have seen my oncologist face-to-face during the pandemic -- the timing was right so that we knew enough about Covid, and the hospital took enough precautions, to make things safe.  So I can't speak about telemedicine for cancer.

 But I did have a few doctor visits for some other health issues that we did over Zoom, and they just weren't the same as a usual visit. For one thing, I was having some breathing issues (and this was happening about the time the survey was being conducted). Asking me a bunch of questions just isn't the same as listening to my lungs through a stethoscope. It took a long time to resolve the issue, and I think it could have happened much more quickly with an office visit. (But I also understand why the doctor's office was being very cautious and not seeing patients face-to-face.)

Mostly, I worry about the kind of connection that will get lost if telemedicine becomes more common. If you've been reading a while, you know I like to say that Follicular Lymphoma is as much an emotional disease as it is a physical disease. And to me, part of the treatment for the emotional part of the disease is meeting with a doctor and feeling better afterwards, knowing the doctor has felt around and not found any problems. There is comfort that comes from physical touch. I don't want to lose that.

So I'm very curious about all of your experiences. Have you had a visit with an oncologist by phone or video? Doctors might feel satisfied after a telehealth visit, but did you feel satisfied? What was missing, if anything? What kinds of visits would you rather have in person than virtually? What kinds of problems would need to be overcome to make a telemedicine visit more satisfying? 

I think we'll probably have more of these virtual visits in the future. I'd like to hear about your experiences, if you're willing to share. 

Hospital Visit

I had a little visit to the hospital last night.

Nothing serious, just annoying.

I have a chronic condition, not life-threatening and not related to cancer, that flares up every now and then. The specialist I see suggested I take a particular medication, one that has some potential serious side effects. So the first time I take it, he said I should go to the emergency room at the hospital, so if those side effects start up, they can take care of me immediately. If there are no side effects, then I can just take the medication on my own from here out.

So yesterday at 3:00pm I started to feel symptoms of my condition. First time I'd felt them in months. As the doctor instructed, I waited two hours to see if they'd go away on their own. They didn't. I texted the doctor and told him what was happening, and that I was going to the emergency room, following our plan.

Unfortunately, the doctor was on a plane, flying home from vacation, so he never got the text. That was OK, since the plan was already spelled out in my electronic records. So the folks at the hospital just had to read the record, and we'd be fine to carry out the plan.

I won't go into too much detail, but I'll give you a little bit.

When I got to the hospital, I tried to explain what was happening, but the nurses there heard the name of my condition and pretty much stopped listening. They ran some tests and took my vital signs and called a specialist. Then they took me too a spot in the emergency room and a doctor came in after a while and listened to what I had to say. I explained the plan to him.

He understood. He was a Resident, in advanced training, so he had to discuss everything with his supervisor so they could work out a plan together.

Let me be clear about this -- my condition isn't life-threatening. I was uncomfortable but OK. I didn't need immediate medical attention. Which was good, because I didn't get any immediately.

The Resident eventually came in and said he wanted to consult with another specialist to make sure the plan was OK. The specialist eventually came and we talked about the plan again. Once he was OK with the plan, he called the hospital pharmacy to order the medication. That was eventually delivered at 9:40pm. All this time, the nurse was coming in to check on me and try to keep me positive. 

OK, the end of this story -- the medication didn't work after an hour so I needed a second dose. It took another hour for it to come up from the pharmacy. That didn't work so they let me leave. The medication finally started working about the time I got home at 1:15am.

It was a long afternoon and evening, but I'm fine. Just tired. (Because my puppy still likes to get up at 5:30 every morning, no matter what I've been doing the night before.)

I'm not looking for sympathy by telling you all of this. Quite the opposite.

I realized that's it's been a while since I've needed to be in the hospital. I go to a hospital for lots of my various doctors' appointments. But it's been a while since I've needed to stay there while they figure out what to do for me.

For those of you who need to go to a hospital often, you have my deep sympathy.

Everyone was very nice, but it seemed like the six people that I needed to work with just weren't communicating with each other. Or they had to wait around until someone else did something before they could do it. It was awful. I'm glad I don't need to do that a lot, and I feel for those of you who do. 

I also recognize I was in an emergency room, so the various doctors, nurses, techs, and pharmacists that I was dealing with were also dealing with other patients, probably people with worse problems than I had. Like I said, my condition makes me uncomfortable, but it doesn't threaten my life. 

So in addition to feeling tired today, I'm also feeling fortunate. 

I hope you're all doing well, and your days are easy.

More Follicular Lymphoma stuff next time.

Clinical Trial: Keto Diet and Copanlisib

Someone on the Follicular Lymphoma Facebook group posted a bunch of FL links this morning, and this one caught my eye:  Some very prestigious cancer centers in New York are conducting a clinical trial involving Follicular Lymphoma patients and ketogenic diets. 

Lots to comment on here.

Let me begin (since it seems appropriate here) by reminding you that I am not an oncologist, or a cancer scientist, or a medical or science professional of any kind. I'm a Follicular Lymphoma patient who had been reading about FL for over 13 years. My opinions are just opinions, though I like to think that they are informed by science.

I know some of you are interested in Keto diets, and in general in how the things we eat can affect our cancer. (I'm not on a ketogenic diet, but I think this is a decent introduction -- gets at the basics and points out the potential bad parts, too. So let me say here that I don't know of any study that shows that FL patients can definitively help themselves by eating certain foods, at least in terms of keeping our cancer in check or making it go away after we've been diagnosed. There are plenty of theories about why certain foods might help (turmeric, broccoli, blueberries, whatever), but no large, controlled studies that show benefits. There are lots of individual patients who say they have eaten certain foods, and remained cancer-free, but one person's experience doesn't mean much, because there are too many other factors that might have been contributing. 

(If you want to look at one person's experience, look at mine -- every week or two, I go to a hot dog stand in my town, eat a hot dog and french fries and a large diet soda, and sometime I dip my fries in fake cheese sauce. It's all delicious and it makes me happy and the owner sits with me sometimes and tells me funny stories. If you want your FL to stay away for 13 years, eat hot dogs and fries and fake cheese every two weeks. You're welcome.)

But really, what I would love to see is some kind of controlled study that does just that. And unfortunately, there aren't many out there. In 2007, there was a really cool-sounding study where they asked FL patients to take a bunch of different supplements, but I never saw anything about the outcomes, so I assume there were no results worth reporting. I think that happens a lot. Researchers aren't interested in publicizing the stuff that didn't work -- which is too bad, because there's a lot to learn from failure, too. 

Anyway, back to this trial. As far as I can tell, the trial is based on an old idea about cancer and sugar. As I'm sure you've heard, cancer cells feast on sugar. This is the basis of PET scans -- you are given a sugary drink, and the scan shows which cells are eating the sugar most quickly. Cancer cells like to eat sugar.

Now, some folks have turned that around incorrectly, and say that eating sugar is the way to feed cancer cells, and the way to kill cancer cells is to starve them of any sugar. The problem with this is, that's not how the body works. Our bodies are amazing machines, and they find ways to create sugar out of other materials, if there is no easy sugar supply available. Cancer cells operate the same way. They'll find a way to get sugar, even if you've given up cookies and ice cream.  That's what they do. They always seem to find a new way to survive, even when we cut off their usual way of surviving. 

(By the way, that Hot Dog place I love so much? The owner's sister opened an ice cream shop next door. After my hot dog, I usually get some ice cream.)

So cutting off sugar won't kill off cancer cells. They'll find a way to survive.

However -- limiting sugar while taking a PI3K inhibitor? That's a slightly different thing.

There has been research that shows that PI3K inhibitors increase blood sugar, causing an increase in insulin, which decreases the effectiveness of the inhibitor. (Remember that PI3K is an enzyme that is part of a long chain of events that keep a lymphoma cell alive.)  If there was a way to decrease blood sugar, and thus decrease insulin, in patients receiving a PI3K inhibitor, then maybe the treatment will work better. All of this was discovered in a study involving mice. The next step is to try it in humans.

And that's where this trial comes in. Patients receiving Copanlisib will also be put on a ketogenic diet, which is higher in fat and lower in carbohydrates that the typical diet. Fewer carbs means lower blood sugar and less insulin produced. 

To be clear about a couple of things:

This trial is not testing whether limiting sugar will stop cancer. It's about a specific treatment and how a specific diet can help make it more effective.

I'm also not suggesting that anyone eat bad food all the time. We should all eat healthily -- lots of fruits and vegetables, whole grains, limit meat and sugar and alcohol. That's good for our general health. But I also think a hot dog and ice cream every now and then in not a bad thing. Every now and then.

I think the trial is great, and if anyone is in a position to join, I hope you'll consider it. And if it were possible to construct a decent trial involving diet and FL, I hope someone gives it a try. There are some challenges to a trial like that, but I think we'd all be better off knowing how much (and in what ways) the food we eat affects our lives as cancer patients.

Do Scans Help Detect Relapse in Follicular Lymphoma?

New research from the journal Cancer, looking at  whether FL patients should get scans after their first successful treatment, to try to detect if the cancer has returned. The short answer -- no, scans aren't necessary.

This is an issue that I care a lot about, and I think it's worth getting into here. 

First, a story. As many of you know, I've seen a bunch of different oncologists over my time with FL. They've been good and bad, but I think the one that upset me most was a soon-to-be-retiring doctor who didn't listen to me and, worse, wanted me to get a PET scan without having a reason to get one. We had a small "discussion" about it, ending with him insisting I make an appointment with his assistant, and me telling the assistant that I wasn't making the appointment.

I understand the impulse. The last time I got a scan, it was because I wanted one. I hadn't been scanned in a few years, and I wanted to see what was going on in my body, if anything. My beloved Dr. R was good about it, and made the appointment for me. The scan showed nothing. It was a lot of radiation in my body when I didn't need it, and I haven't had a scan since. 

In the last few years, more research has shown that scans aren't really necessary for this purpose. Let me be clear about that -- scans are great tools when someone is diagnosed, to help stage the disease. And they are great immediately after treatment, to see how well the treatment worked. But for a "surveillance scan," just kind of taking a look around inside? They aren't helpful. Research presented at ASH in 2017 said so, and more research presented at ASCO in 2019 said the same thing.

The current research, in an article called "Surveillance imaging during first remission in follicular lymphoma does not impact overall survival," says the same thing. 

Researchers looked back at patients from two cancer centers who had a response to their first treatment. They then looked at how many of those patients relapsed, and at how the relapse was detected -- by a scan or because of "clinical concerns" like a blood test, or a physical exam, or just having the patient say something felt unusual. In one group, 55 out of the 148 relapsed, and then 35 of the 55 (64% of them) were detected clinically, rather than from a scan. In the other group, 177 patients relapsed, and 63 of them (54%) were detected clinically.

In addition, there was no difference in Overall Survival between the groups.

So, to sum it up -- more patients who relapse have their cancer detected by clinical means than by a scan, and whichever method is used to detect, it doesn't affect how long the patients live. So, for patients who have Follicular Lymphoma and had successful treatment, getting scans to try to figure out if the cancer has returned (when there are no other signs that it has) is ineffective at best, and might be expensive and harmful at worst.

Like I said, I certainly understand why people want to get them. We live with so much uncertainty as Follicular Lymphoma patients, and a scan provides some certainty, even if it tells us that nothing is there. I get it.

But if more patients have their relapse detected by noticing that something is wrong, and then letting an oncologist know so it can be tested, then it seems like the better way to do things is to trust ourselves to know our own bodies, and insist that our doctors do the same.

  

WEGO Health Awards

The WEGO Health Awards are up and running again, and this year, I have been nominated for one award: Healthcare Collaborator.

I've been nominated a few times for WEGO Health Awards (like Best in Show: Blog), but never for this one. It's kind of cool, though -- my advocacy work has been turning in that direction, trying to find ways to collaborate with the healthcare industry to make sure the patient's voice is heard in as many ways as possible.

Here's the description for the award:

Fortunately, more than ever the healthcare industry is seeing just how valuable patient leaders can be! Our Healthcare Collaborator category is for the advocates bridging the gaps between industry stakeholders and healthcare consumers. Whether speaking at conferences, consulting with healthcare companies, using their education or research to help make change in the healthcare industry, or creating apps and products to fulfill needs in the current system, these patient leaders are impacting the healthcare landscape at large. 

 I haven't created an app (sorry- don't have the skills for that one), but I have tried to find opportunities to work with different parts of the healthcare industry in ways that match up with my skills. 

In the last year, I was a member of the HealtheVoices Impact Award Advisory Committee (that's me at about 1:45 in this video!), which gave out grant money to advocates to work on projects to help patients  in their health communities. I was on the 2019 advisory committee, too, and they asked me to come back for 2020. The grants are funded by Janssen, the pharmaceutical company, and I worked with their Director of Community Impact on the project. It was a very satisfying experience. 

I also worked on a couple of grant programs sponsored by the Department of Defense, the Peer-Reviewed Cancer Research Program and the Rare Cancers Research Program. For both, I was a patient representative on a panel that made recommendations grant applications for cancer researchers. Working with oncologists and cancer biologists, I described how the research would affect patients' lives -- something only another patient, not a doctor or a scientist, could fully understand.

I've done some other work as a healthcare collaborator, too, like working with the National Board of Medical Examiners' Video-Based Communication Assessment, giving feedback to doctors on how well they communicate with patients in certain scenarios.  I've done some advising with pharmaceutical businesses, too, giving them feedback on how they present information to patients.

It's all been very interesting work, and I've enjoyed being able to make sure our voices are being heard. Patients have been talked TO for so long, it's important that they are being talked WITH. And I'm happy to be a part of that.

If you are inclined to endorse me, you can click on the icon at the top of the page, or click here to go to my Awards profile. 

When you get there, you can click on the "Endorse This Patient Leader" to give me your vote. If you can't find that, click the "Awards" tab and it should come up. And if you want to nominate me for a different award than Healthcare Collaborator, you can do that, too.

  

WEGO will ask you to give an email address, so be aware of that before you go into it. 

Thanks for your consideration.