Managing Follicular Lymphoma with Oral Therapies

There are times when I realize I haven't thought about the blog much for a few days, and then I look at the last thing I posted, and realize it's been almost a week since I wrote something. This is one of those days.

I went back to work last week. As in, face-to-face, in a room with other people, not working from home. It's been almost 18 months since that happened. And I have to tell you, it's strange. I stopped at the coffee shop, and the same woman who was there all those months ago is back. I used to stop and chat with her for a few minutes, and I always asked about her grand daughter. (Grandparents like to brag about their grandkids.) This child was the smartest child in the world (at least according to her grandmother). She was 2 years old and already knew a bunch of words in Italian. 

As we talked the other day, the woman was describing how smart the kid was, and I thought, "Wow -- that's unbelievable. No 2 year old can really do that!"

And then I remembered that the child isn't 2 years old anymore, she's 4. In some ways, being back at work felt like it was yesterday, but then I realize that so much has passed me by. It's a world that's very familiar, but so much has changed.

While I like being back at work, there is also the challenge of trying to do my job while not being anxious about everything, given that we are still very much in a pandemic. And my own immune status is very much unknown. My blood count numbers are good, but I still don't know how my body would react to getting sick. Everyone where I work has to be vaccinated, or gets tested once each week, and everyone is required to wear a mask inside. So that eases my anxiety a little bit, anyway. 

But I'm still anxious, and still adjusting to the "old new world" I find myself living in. 

All of this is, of course, my way of saying I haven't had a lot of time to write in the last week.

But I do have something interesting to share.

It's a video, about 5 minutes long, called "Jonathan W. Friedberg, MD, on Managing Indolent NHL With Oral Therapies," from the ASCO Post. 

Dr. Friedberg works at the University of Rochester Medical Center, and the video comes from his presentation at the 2021 Pan Pacific Lymphoma Conference. In it, he talks about why he uses Lenalidomide + Rituxan (also known as R-Squared) for Follicular Lymphoma when it has returned after treatment, rather than when someone is first diagnosed.

It's an interesting, short video, and I'm sorry there is no transcript for anyone who needs a translation. 

Hoping things settle down soon.

 

Update on Mosunetuzumab (Bi-specific) for Follicular Lymphoma

Finally, some interesting research to report on! You don't need to listen to my opinions about vaccines and telemedicine (at least for a few days).

At the 2021 Pan Pacific Lymphoma Conference (held in beautiful Hawaii a couple of weeks ago), there was a presentation called "Updated Experience from Mosunetuzumab in Multiply Relapsed Follicular Lymphoma: Promising Efficacy from a Phase 1 Trial."

The slides from the presentation are available here.

The presentation is an update from a phase 1 trial for Mosunetuzumab, a bi-specific. I've written about bi-specifics before, but here's a reminder. A treatment like Rituxan works because it seeks out cancer cells (B lymphocytes, specifically) that have a protein on its surface called CD20. When it finds the CD20, it attaches itself and kills the cancer cell.

A bi-specific works in a similar way, but because it is "bi" it attaches to two things -- first the cancer  cell, by finding the CD20. But it also looks for a CD3 protein, which is found on a T cell, an immune cell that can kill cancer cells (that's the "T" in CAR-T). So the bispecific might kill the cancer cell on its own (the way Rituxan would), but it also brings in the T cell to help. So, in theory, a bispecific could be twice as effective as something like Rituxan.

This presentation reports on a phase 1/2b study. Phase 1 studies usually involve a fairly small number of patients, and focus on how safe a treatment is, and how much of the treatment to give to be both safe and effective. The study involves 62 patients with FL who have had at least two previous treatments. Some of the patients were considered "high risk."

The numbers look good. There was an Overall Response Rate of 67.7% (42 of the 62), including a Complete Response from 51.6% (32 of 62). The responses for patients with high risk FL were also high.

Because the trial focuses specially on patients who have already had 2 or more treatments, the researchers are especially interested in how well Mosunetuzumab works on patients who have had specific treatments. In the study, 4 patients had already had CAR-T, and it had stopped working (they were refractory). All 4 had a response, and 2 of the 4 had a Complete Response. 

For patients who were refractory to PI3K inhibitors, the response rate was 92%, with an 84% CR.

For patients who were POD24 (that is, their disease came back within 24 months of receiving immunochemotherapy, making them very high risk), the response rate was 76%, with a 55% CR.

There were a few other breakdowns for high risk subgroups, and their numbers were equally good. 

As a phase 1/2b study, the researchers are looking at a few different things. As a phase 1 study, they are still looking at dose escalation -- figuring out how much to give a patient before it becomes too much. And as a phase 2b study, they already know it works, and are looking to create a larger, phase 3 study, which would potentially lead to approval. That's where they are headed, with a combination trial where patients will get Mosunetuzumab and Lenalidomide. Combos often work better than single agents.

I focus a lot on first-line treatments -- what a patient receives the first time they are treated after diagnosis. That seems to me like the logical place to focus for a disease like Follicular Lymphoma that is considered incurable. But treatments like Mosunetuzumab in a trial like this one are so important, too -- if they are effective for people who have already had two or more treatments, they might extend survival and improve quality of life for a lot of us. I'm past the need for a first treatment, like many of you, so trials like this one are worth paying more attention to.

Some good news during a slow summer.

LRF Webinar on Covid-19 Vaccinations for Lymphoma Patients

The Lymphoma Research Foundation has been doing a great job with webinars lately. As I wrote a few weeks ago, the LRF did a webinar on Follicular Lymphoma on August 3. The webinar gave some basic information on FL and an update on treatments, focusing on some of the more recently approved ones.

If you didn't get to listen in on August 3, you can watch (or listen to) a recording of the webinar on YouTube. Click here to access it. (I was hoping there would be a transcript available somewhere to make translation easier, but I can't find one anywhere.) It's a little over one hour long.

The first part of the webinar didn't offer a lot of really new info, especially if you keep up with the world of FL. This wasn't surprising.

The question and answer part of the presentation is usually where there things get interesting. In my professional life, I sometimes go to presentations that have a question-and-answer. Some questions are really specific and don't mean much to anyone other than the person who asked it. But sometimes someone asks a question that really brings up an issue that gives some new information or a new perspective on things.

The questions come about 45 minutes into the webinar. They include things like "Are there any studies that show how diet can affect FL outcomes?" (Answer: No, there haven't been any studies, but eat a healthy diet to stay healthy in general). 

Another: "I had radiation. Am I immunocompromised?" (Answer: Being in remission after radiation is probably the least immunocompromised among FL patients, but any lymphoma patient is probably immunocompromised in some way, so we should all be extra careful.)

And another: "Will an antibody test tell me if the Covid vaccine worked?" (Answer: The antibody tests just aren't accurate enough to tell us your status. Be careful. And if a booster becomes available, talk to your doctor about it.)

A reader named Cricket left a comment on my post about this webinar: "Would be helpful if they would address Rituximab and determination of COVID vaccine effectiveness."

That question wasn't exactly addressed, though the topic was dealt with in a very general way.

And even that general topic is obviously a big issue for many cancer patients, especially blood cancer patients. A lot of us have treatments that leave us immunocompromised, or maybe with an "imperfect immune system." I wrote a little bit about this last week, just before the CDC recommended a booster shot for immunocompromised patients. Most of the comments I have seen from oncologists come down to the same thing -- talk to your doctor about whether this booster is the right choice for you.

To help you with that conversation, the LRF is having another webinar on this topic very soon. The webinar is called "Update on COVID-19 Vaccination and the Centers for Disease Control and Prevention Guidelines for Lymphoma and CLL Patients." It will happen on August 23, at 1:00pm EDT. You can register for it here. 

The webinar will be led by Dr. John Leonard from Weill Cornell Medicine, maybe one of the best-known lymphoma experts in the world. 

The whole point of this webinar is to provide up-to-date information about Covid vaccines for lymphoma patients, especially information about boosters. There will be a question and answer period here, too (and maybe Crickets question will be answered).

 Here is the overview of the webinar, and the topics being covered:

• Overview of LRF COVID-19 Resources  
• Centers for Disease Control and Prevention (CDC) Guideline Vaccine Updates  
• Concerns and Considerations for Lymphoma Patients and Survivors  
• Questions to Ask Your Oncologist / Health Care Provider 
• Question and Answer Session  

It should be a good webinar. I can't guarantee it will answer all of your questions; I think a lot of the answers are going to be some version of "talk to your doctor." BUT, one of the topics listed is important -- "Questions to Ask Your Oncologist / Health Care Provider." So if nothing else, you should come away from the webinar with a way to start that conversation with the doctor.

Summer is usually a little quieter, in terms of new research in Follicular Lymphoma. So it's a nice time to "play catch up," and I hope things like these webinars help you do that.

 

COVID Vaccine Booster for Blood Cancer Patients?

The website Patient Power has a really nice interview on its site about Covid and blood cancer patients. It tackles a few different issues, and it's worth watching. You can find the video, or read (or translate) the transcript, here.

The video features an interview with Dr. Gwen Nichols, MD, who is the Chief Medical Officer of the Leukemia & Lymphoma Society. The interview is conducted by Andrew Schorr, who founded Patient Power, and is himself a blood cancer patient (with CLL, another indolent blood cancer).

One of the big questions on blood cancer patients' minds is, should we get a booster shot -- a third vaccine, to make sure our immune systems are able to handle it, should we be unfortunate enough to get Covid-19?

The question is particularly important because there is a chance that the FDA will approve this kind of booster shot for immunocompromised people in the U.S. sometime soon. Other countries are doing the same thing. And the U.S. may have a policy for everyone to have a booster shot sometime later in the year.

(And I recognize that there are many places in the world where a "booster" still isn't an issue because lots of people haven't even had the opportunity to get a first or second shot. I hope that happens very soon for everyone, if it hasn't happened yet.)

But back to the question -- should blood cancer patients get a booster shot, if they have already been vaccinated?

According to Dr. Nichols, the answer is complicated. The first part of the answer is, we don't know. There really hasn't been a lot of research on research on blood cancer patients to show how they will react to a booster -- whether it will be effective, or safe. There is some research going on, in the U.S. and other countries, but not specifically focused on blood cancer patients. Some blood cancers can suppress B lymphocytes (that's the white blood cell that becomes cancerous for Follicular Lymphoma and some other lymphomas), and treatments can also suppress B lymphocytes. That can cause problems for people who get Covid-19. However, B lymphocytes are only one part of the immune system. If they don't work, other immune cells might take over. But it's really hard to know that.

There is a lot that we don't know. There's a lot of data that we still need.

So, says Dr. Nichols, the thing you should not do is take things into your own hands. She hears stories of people who lie about having been vaccinated, and get a third vaccine by saying they have only gotten one or two. That's understandable, but also potentially dangerous. Maybe if the booster is approved by the FDA, there will be enough data released to make the choice obvious. At the very least, talk the option over with your doctor if or when the booster becomes available, and get their opinion on whether it is a good option.

In the meantime, if you do suspect that you have been exposed to someone with Covid-19, Dr. Nichols says to get tested right away, and then speak with your doctor about treatment. There may be monoclonal antibodies available, but they work best soon after exposure to Covid. It's the same advice my oncologist gave me a few months ago.

And finally, Dr. Nichols has this advice for the LLS for blood cancer patients: Get vaccinated, and behave as if you were unvaccinated. That means get the vaccine when it becomes available, or get it now if it available and you have hesitated. But be careful anyway -- wear a mask, avoid large crowds indoors, keep your distance outdoors, and get tested if you suspect exposure. I've been doing my best to follow this advice.

I see a lot of information online about Covid-19 and blood cancer, and I usually don't write about it because I'm afraid I'm going to cause someone to panic. That's the last thing I want to do. I also now that I am lucky to have been vaccinated already, and not everyone is so lucky. 

But the advice here is good, and I hope you'll watch the video or read the transcript. Like everything else, it comes down to trusting experts -- ask your doctor about vaccinations, about booster shots, and about treatment, if necessary.

Stay safe, everyone.

ASCO Guidelines for Telemedicine

OK, I know I've already done two posts on telemedicine and oncology in the last few weeks, but here's one more.  It's an important one -- the new guidelines from ASCO on when and how cancer patients should have telemedicine (a visit with the doctor by phone or video) instead of a face-to-face meeting.

And as I've said in the other two posts, I think this is important because my feeling is that telemedicine is going to be a big part of our lives as cancer patients from here on. In the United States, Covid-19 is making a return in many parts of the country, including the one I live in, after seeming to become less of a threat. Even if it recedes again soon, the lingering attitude is going to be "That's not good, but at least we can keep up doctor visits virtually." And it's going to just become a regular part of our lives. And then, since these visits are less expensive, we're likely to have insurance companies encourage them when possible.

It's not a bad thing -- there's a place for telemedicine, and as the two other articles show, both oncologists and cancer patients think it can be a good thing. But it has to be done right.

And that's where these new guidelines come in -- officially called "Telehealth Standards in Oncology." 

I won't go through the whole document. It's easy enough to read on your own if you're interested. But I can sum up the highlights. 

The guidelines were put together by studying all of the research on telemedicine and then putting together a panel of oncology experts to think about how cancer care should be delivered through technology. Public comments were also included in the discussions.

They considered some important questions -- Is there research that shows that there is a difference between telemedicine and face-to-face visits, good or bad? Is there a role in telemedicine for health professionals other than doctors, like nurses, or physician's assistants, or social workers? Is there a way to use telemedicine to include more patients in clinical trials?

Looking at the guidelines, it seems like the panel has thought pretty carefully about a very wide range of uses for telemedicine. 

Some of the interesting things that I find n the guidelines:

• There are lots of situations in which a cancer patient might have had to go into the doctor's office that can be handled by telemedicine, and not necessarily with the oncologist -- prescribing or changing medication, meetings about what to expect during treatment, discussions of lab and scan results, supportive care (finances and nutrition) and survivorship meetings, and routine follow-ups. Some other things are listed as OK that I think probably aren't (like discussions about hospice care, or genetic testing. A more personal touch might be nice).
• There are other situations that are listed as being better handled face-to-face -- initial meetings after diagnosis, complex cancer situations, meetings with patients who have hearing or vision problems that would make a telemedicine meeting difficult, and patients who do not have adequate technology for telemedicine.
• Patients need to be evaluated before a telemedicine visit to determine if it is the best choice. Patients should be given the option to meet face-to-face if possible.

As I said there is more to the guidelines than this, but probably not worth going into minute detail about it.

The important things are (again, in my opinion) telemedicine is probably going to be a regular part of our lives as cancer patients, there are now guidelines available for how it should be done to be most effective, and it is important that we advocate for ourselves, to make sure we are getting the care we need in the way that makes the most sense for us.

I'm fortunate, personally, to be fairly close to my oncologist, and to be physically able to travel to see him when I need to. I like the emotional comfort that comes with being in a room with my doctor,  getting a physical exam that confirms how I feel, being able to see the look on his face as we talk, and getting to spend some time with him. Those things are important to me. When it comes time, I will make those feelings known.

How Patients Feel About Telemedicine

A couple of weeks ago, I wrote about an article that described a survey of oncologists and how they feel about telemedicine -- appointments with patients by phone or video. They mostly like it.

And I wondered then how patients felt about it (and gt a little bit of feedback from some of you). My biggest concern, as I said then, was the lack of connection that telemedicine brings. And, as I've said for a long time, Follicular Lymphoma is as much an emotional disease as a physical disease, since many of us do not have physical symptoms, while we deal with the emotional burden of having cancer. Telemedicine seems perfect for that kind of patient -- one who is maybe watching and waiting, and not dealing with actively growing cancer. But at the same time, it could be exactly the wrong kind of approach for an FL patient, who needs to kind of personal touch that telemedicine can lack. 

This week, the same journal published a separate study that looks at how patients feel about telemedicine called "Medical Oncology Patient Perceptions of Telehealth Video Visits." It's a different study -- different researchers and different methods. The study of oncologists used a large survey, while this study looks at a very small number of patients -- just 20 of them -- and instead of survey, used interviews. Interviews are nice because they usually mean more detailed answers, but they also take more time and effort, so you end up with fewer people in the study (20 patients vs almost 800 oncologists). That can throw things off a little, especially since, in this study, they are all patients at the same hospital (which might be doing a great job with telemedicine, or a really bad job).  This study only discusses video visits, not phone visits. The average age of the participants was 60.5, so many might have had problems with the technology. The point is, treat this like a phase 1 clinical trial -- not many participants, so limited in what it can tell us.

That said, the answers do make a lot of sense. (I don't have access to the full study, so I'm only going by what's in the abstract.)

The positives of video visits with the oncologist? Patients had a few responses. Convenience was one (it's certainly easier to do this by phone rather than drive to the doctor's office or hospital, especially if the patient has trouble getting around). Anxiety was another -- sometimes just driving to the office can trigger some anxiety, and being at home might be more comfortable. COVID-19 was another positive for video visits -- no danger of catching it when you're in your home. And "provider preference" was another positive (I'd love to hear more about this, because I can see that as a negative, too, if "patient preference" is to go to see the doctor in person.)

So lots of positives.

Of course, there were some negatives as well.

These include "limitations in provider connection, physical examinations, and visit length." I assume "provider connection" means the kind of emotional connection that I talk about above, though it might also mean connecting to the technology, which could be an issue for many patients. The lack of a physical exam, it seems to me, is an emotional issue as much as a physical one. There is comfort in having a doctor feel my nodes and say "That thing you feel is nothing to worry about." And visit length is kind of a surprise for me, but maybe it shouldn't be. Many of us have had to spend time on zoom or other video platforms for work, and we're tired of it. Getting out of a meeting as soon as possible is always a goal for me. Maybe it is for some doctors as well?

An interesting note in the article abstract -- when it comes to getting bad news, the patients' opinions were mixed. Some preferred a video visit because it was private, immediate, gave time to process the news, and allowed family members to be nearby for comfort. But other patients wanted to be in-person with the doctor, to get face-to-face support, written instructions, and referrals. (Personally, I wanted the news about my diagnosis right away, and it was frustrating when I had to get a phone call telling me to come in to the office a few hours later. I think I'd be OK with getting the news by telemedicine.)

The conclusion from the researchers? Doctors need to understand each individual patient's needs and desires when it comes to telemedicine. That sounds right -- we all have different needs, and sometimes our needs change. 

My fear is that, in trying to understand patients' needs, doctors (or insurance providers) don't use what they learn to push people into something they don't want.

As always, it's important that patients stand up for themselves and make their needs known. "Provider preference" is important, but patient preference needs to some first.