Thanks for Reading

 Just a quick comment about something that's been on my mind for the last few days.

A little more than a week ago, I posted the news that my wife and I have a new puppy. I appreciate all of those who said she was really cute. (I agree -- she is.)

As I was looking at the comments and trying to find time to respond while my dog was taking a nap, I couldn't help but notice that the commenters were from California and Virginia, on both sides of the U.S., plus Ireland and Brazil. And while that conversation was going on, I was having email exchanges with readers from Italy and Canada.

I really love how far and wide the blog has traveled. It was never really intended to be something like that. I started it, as some of you know, as a way to let family and friends know what was happening with my diagnosis and (what I assumed would be upcoming) treatment. At some point, I got a comment from someone from Florida (about 1200 miles away). A few months later, another comments from a reader in Scotland. And since then, more readers from all over the world.

I can't tell you how happy that makes me. 

One of the great things about being a cancer advocate is hearing from people that I've said or done something that has helped them. To know that I've helped so many people, from so many parts of the world, is really amazing. 

And that says something about how connected we are. Not just as cancer patients, or Follicular Lymphoma patients and survivors and caregivers, but just as people. We all have some of the same needs. To find information that we didn't have before. To connect with others who have shared the same experiences. To know someone else is out there. 

I'm happy to be the person who can give the information and be the one whose experiences are being shared. 

But you all should know that you do the same thing for me. 

I've always said that I'd write the blog even if I didn't know anyone was reading it. It does me good to read and write and stay informed, and to work through some things that are on my mind.

But it's even better to hear back from people and know that someone is out there.

So thank you again for reading. All of you, wherever you are. 

And as always, feel free to comment, or to email me (address is in the profile). I love to hear your stories, and I'm happy to help whenever I can.

Stay well.

Bob

Glofitamab: Bispecific for Follicular Lymphoma

Some exciting news from the world of Lymphoma this week. A bispecific had some excellent results in a phase 1 clinical trial. 

The results were published in The Journal of Clinical Oncology article called "Glofitamab, a Novel, Bivalent CD20-Targeting T-Cell–Engaging Bispecific Antibody, Induces Durable Complete Remissions in Relapsed or Refractory B-Cell Lymphoma: A Phase I Trial." 

Some background first. A bispecific is a treatment that connects to two different cells (which is where the "bi" comes from in the name). Think of Rituxan, the monoclonal antibody. It attaches itself to the CD20 protein on a B cell (the kind of cell that turns cancerous in Follicular Lymphoma). Very effective for lots of people. Now imagine something like that, but double-ended. One side can find a protein on a cancer cell and stick to it. But the other side can also find a cell and stick to it. In this case, a T cell, the kind of immune cell that kills invaders. The bispecific acts as a way to bring the cancer cell, and its worst enemy, right next to each other. A very cool idea.

And a very effective one, apparently. There are a few different bispecifics being tested  in trials for blood cancers. This one, called Glofitamab, works as I just described. That "-mab" on the end shows that it is a Monolonal Antibody, and it connects to the same protein as Rituxan does (CD20). But it also connects on the other end to the protein CD3, found on T cells. 

T cells can be very powerful, as long as they can figure out that cancer cells shouldn't be ignored. (The "T" in CAR-T stands for "T cell.")

 The study described in the article is a phase 1 trial, meaning its main focus was on "dose escalation" -- figuring out how much of the treatment to give to be most effective while staying safe. There were patients with lots of different blood cancers in the trial, mostly aggressive (like DLBCL and transformed FL), but with some indolent FL as well.

In an interview with the lead researcher, he pointed out that the treatment seemed to be even more effective as they increased the dose, while keeping side effects manageable. Patients in the trial were first given Obinutuzumab to cut down on the number of cancer cells, and then given the Glofitamab.

The Overall Response Rate was 53.8%, including Complete Responses in 36.8%. Different types of lymphoma had different response rates. Transformed Follicular Lymphoma's ORR was 41.4%, but indolent FL had a response rate of 70.5%. That's excellent.

Of course, there were side effects. Cytokine Release Syndrome was a problem for about half of the patients, with severe CRS in a small number (3.5%). Five patients had to withdraw because of serious side effects. Other side effects included nerve issues and low blood counts, which are common in blood cancer treatments.

The lead researcher is optimistic that this treatment could eventually be as effective as CAR-T, though less expensive, since it is "off the shelf," while CAR-T needs to be manufactured specially for each individual patient.

I like optimism, but a phase 1 trial is a long way away from the doctor's treatment room. I hope he's right. We'll have to wait and see.

The phase 2 trial will use the dose that was most effective in the phase 1 trial. There may be separate trials for the different types of lymphoma being studied.

I have a feeling this bispecific, and some others, will be a big topic of conversation at the ASCO conference in a few months. Which I'm excited about, since it will be online ad I'll be able to attend again this year!

Canine Companionship

Blood-Cancer.com, a website that I write for when I'm not writing here, published a nice piece this week called "My Furry Companion." It's a lovely tribute to a dog named George who has been there for a blood cancer patient through her diagnosis and treatment. 

Dogs are wonderful -- or, they can be wonderful, anyway. As the writer points out, they can provide the kind of unconditional love that so many of us need.

And useful, too. The first dog who was taught to sniff cancer was also named George. He was a Standard Schnauzer.

And you might remember that my own beloved dog was also a Standard Schnauzer. We had to say good bye to her in September, and she's left a little bit of a hole in our hearts for six months.

Which is why I am happy to introduce you all to our new Standard Schnauzer puppy.

Meet Katara.

We brought her home yesterday. She's about 9 weeks old, and an absolute cutey. She's very affectionate, and very curious, and is sure to keep us busy for a while.

She's named for the character Katara in the cartoon Avatar: The Last Air Bender, which is a show our kids loved when it was on a few years ago, and which we all watched together when they were home last summer. It's a kid's show, allegedly, but with lots of great characters and some grown-up messages.

In the show, Katara is a Water Bender, able to make water move in any way she likes. More importantly, she's a healer, maybe one of the greatest healers in the world, and that's a big part of the name.

My wife and I are empty nesters again, with our kids all back in school. We didn't necessarily need something to keep us busy, but we're happy for it anyway.

I promise not to clog up the blog with too many puppy photos and videos (though I may invent a reason every now and then to put something up). If you want to see more, Katara has her own Instagram account, so you can find her at @KataraTheDogg.

Looking forward to sharing more FL news soon. Stay well.

Indolent Lymphoma at the Congress on Hematologic Malignancies

Last month, the 25th Annual International Congress on Hematologic Malignancies: Focus on Leukemias, Lymphomas, and Myeloma took place. This event has obviously been around for quite a while, and it's an opportunity for oncologists to get the latest information about blood cancers from specialists in the area.

So in that way, it's not necessarily a place to get cutting edge research. It's more about hearing from experts about what's new in the field, and thinking about how that research might work in a clinical setting -- with real patients sitting in an exam room, trying to make decisions.

The session on Indolent Lymphomas (including Follicualr Lymphoma) was led by Dr. Lori Leslie, co-Medical Director of the Cancer Program at Mountainside Medical Center, and Director of the Indolent Lymphoma and CLL Research Programs at John Theurer Cancer Center, both in New Jersey. (She seems very cool -- she has a few videos from last December on the OBR Oncology YouTube channel.) 

So, again, the presentation wasn't necessarily about new stuff that people were hearing about for the first time, but more a summing up of where we are, based on recent research. If you've been reading for a while, I like these kinds of posts. It's good to be reminded of where we are.

The Congress was not available online (and I couldn't have afforded to go to it anyway), but OncLive provides a nice summary of Dr. Leslie's session.

The main point, at least as presented in the article, is that Immunochemotherapy remains the most popular first treatment for Indolent Lymphomas like FL. This includes Rituxan + Bendamustine (B-R), R-CHOP, and R-CVP.

More recently, Obinutuzumab has sometimes been used a replacement for Rituxan in those combos. Obinutuzumab and Rituxan are similar in many ways, including the Overall Survival that comes from using them. However, Obinutuzumab also has a little higher median Progression-Free Survival -- that is, it takes longer for the disease to come back after treatment. On the other hand, Rituxan has a little better safety, with fewer patients in trials getting serious side effects. Both need to be taken into consideration when choosing which treatment to go with.

Another first line treatment to consider is R-Squared (Rituxan plus Revlimid/Lenalidomide). In a study that compared R-Squared to Immunochemotherapy, the two treatments were about equally effective, with different side effects. It could be an option for patients who wouldn't do as well with chemotherapy (because, for example, it might be too hard on their bodies). 

The question of Maintenance was also addressed. Some patients receive Rituxan or Obinutuzumab Maintenance -- after they receive their first treatment, they receive a monoclonal antibody every couple of months for two years. For some patients, it seems to help improve their PFS and Overall Survival, but for others, the side effects of having a less effective immune system for two years might not be worth it. It's been a controversial strategy for a long time, and it remains so, with no easy answers.

Dr. Leslie also discussed targeted therapies -- non-chemo treatments that do a better job than chemo of finding cancer cells and leaving healthy cells alone. These include single-agent Obinutuzumab, inhibitors like Ibrutinib (which works well for other indolent blood cancers, but not so well for Follicular Lymphoma, and no one knows why for sure), and some other inhibitors. They tend to better right now when they are used as part of combinations. Still lots of hope with them, though.

No mention of CAR-T in this presentation. My guess is that it got its own session at the Congress.

So some interesting stuff here. As I said, I think it's valuable to know where we are, and to review recent research. It helps me figure out what we still need to know -- and what I should be paying attention to. 

And, of course, it reminds me of the options I already have available. That's always a good thing.

Yet Another CAR-T Approval for Follicular Lymphoma

Big news for a lot of Follicular Lymphoma patients: The FDA approved a version of CAR-T for patients with Relapsed or Refractory disease and who have had at least two prior treatments.

The news was announced a few days ago, and I've seen a bunch of stories about it -- it's a big deal. I'm finally getting a chance to write about it.

There have already been a few versions of CAR-T approved for more aggressive lymphomas, including transformed FL and grade 3b FL. This approval (for the CAR-T known as Yescarta, or axicabtagene ciloleucel) is approved for indolent (slower-growing) FL. This expands the number of FL patients eligible for CAR-T by a large number.

The approval came from data from the ZUMA-5 trial. It's a phase 2 clinical trial, so it's an Accelerated Approval.  As I wrote about a couple of weeks ago, the numbers for the trial have been impressive. The Response Rate was 91% for patients with Relapsed or Refractory FL (their last treatment stopped working, or didn't work at all). An earlier article I linked to a few weeks ago said that 80% of FL patients had a Complete Response. After 18 months, 74% of patients with a Complete Response were still in remission.

So, in short, it works, and it continues working for a while.

As with any treatment, serious (even life-threatening) side effects are inevitable, and CAR-T is no different. In this study, 8% of patients had serious Cytokine Release Syndrome, and 21% had severe problems with nerve damage. Many patients experienced less severe side effects as well.

This is all great news. I know many readers are in a position where they've had a couple of treatments already and this is the group who would be eligible for this CAR-T treatment.

Of course, the issue that comes up is cost. Because CAR-T is created by removing T cells from each individual patient and manipulating them in a lab before putting them back into the patient, the process of creating CAR-T is fairly time- and labor-intensive. A single treatment can cost almost a half million dollars. 

The hope is that, with more patients eligible, maybe the manufacturing process will change to become more efficient and less costly. We shall see.

For now, this is cause to celebrate. Another arrow in the quiver for a lot of Follicular Lymphoma patients.

Who Decides When to Scan for Follicular Lymphoma?

This topic comes from an interesting source. I'm not entirely sure what it is, but it looks to me like a podcast or a video of a podcast called "Ask the Doc." And it looks like it is sponsored by an oncology practice called Georgia Cancer Specialists, which is affiliated with Northside Hospital Cancer Institute. (If anyone out there knows this show, and goes to this practice, I'd like to hear).

The video features two doctors (and a host) who seem to take questions from listeners/viewers about cancer. This broadcast features a question about Follicular Lymphoma. (It comes about 12 minutes int the video.)

The question comes from from someone whose mom was diagnosed with Follicular Lymphoma 7 years ago. She had chemo and then two years of maintenance. She had follow-up scans for 5 years, and then was not given any more scans. Her daughter, who asked the question, wanted to know why her mom wasn't getting any more scans.

The answer was interesting. The oncologist (seated on the right; the doctor on the left apparently isn't an oncologist) talked about how some practices can "handcuff" a doctor. In this case, the thing that is keeping the scans from happening is the insurance company. In the United States, as many of you know, most people have private health insurance, and the company that pays the bills usually has to approve tests and treatments. So on this podcast, the oncologist was blaming the insurance company for not approving the scan. NCCN guidelines say that scans should be given for 5 years, and then, if there are no clinical signs that would make the scans necessary (like a swollen node or a problem with blood work), then no scan is needed, so the insurance company won't pay for it.

(The doctor showed the NCCN guidelines he was referring to. Unfortunately, he showed the Diffuse Large B Cell Lymphoma guidelines, which do indeed say that scans should be given for 5 years, and then only if "clinically indicated." But this was a question about Follicular Lymphoma. The NCCN FL guidelines say scans should be given for 2 years for FL, and then no more than annually. Seems like a difference that matters here.) 

What followed was about 15 minutes of discussion of insurance companies, Covid-19 restrictions, and some other issues that weren't really related to the question. (The doctors have very strong opinions on a number of things that are related to medicine, but are not necessarily medical opinions.) The doctors do seem to agree, however, that Covid vaccines are very important, and everyone should get one.

What they didn't discuss was recent research that suggests that scans aren't helpful in detecting a recurrence of lymphoma. In other words, "surveillance scans," as they are called, that are given just for the heck of it, are not as useful at detecting whether lymphoma has returned as a blood test, or even as a patient sensing that something is wrong. They do, however, cost money, and also result in health costs, since they introduce more radiation into the patient's body without necessarily providing any good information.

It was interesting to watch, and it confirmed for me some important things.

First, if you're able, I think it's important to consider a second opinion for major decisions about cancer.  And it should be from a lymphoma specialist. That's not to say that first opinions are always wrong. But I do remember seeing Dr. C, a lymphoma specialist, a few days after I was diagnosed, and him telling me that if you had 10 oncologists look at a patient's record, they'll have 11 opinions. 

In other words, especially in FL, where there's no one "right" answer, it's good to hear several opinions. You might hear something that's a little bit more "right" than the first one.

Second, I think it's really important for patients to educate themselves. That's no surprise to anyone reading this. I'm not an oncologist, or any type of medical doctor, or even a biologist. You shouldn't take medical advice from me, or anyone else online who isn't a doctor. What I hope I can do is give you enough information to know which questions to ask when you do see your doctor. And you can't really know without having some background knowledge. If someone I loved wasn't getting a scan and I thought they should, I'd want to know if it was an insurance payment issue, or a medical issue.  That difference matters.

The internet is a fascinating place, with lots of wonderful information, and lots of bad information, too. I hope you'll keep reading carefully and learning what you can, so you a better idea of which is which.