Three Factors to Consider in Choosing R/R Treatment

The website Oncology News Central posted an interview a few days ago with Dr. Ahmit Mehta, a Lymphoma specialist at the University of Alabama at Birmingham. It's called "Three Factors to Consider in Relapsed/Refractory Follicular Lymphoma Care." It runs a s a video, but there is also a transcript if you'd rather read, or you need to translate. The website is mostly aimed at oncologists and other health professionals, but I have to say, Dr. Mehta does a fantastic job of explaining things very clearly. I don't know if anyone out there is a patient of his, but I'd bet he's just as good at explaining things in person. 

I thought it was an interesting interview for two reasons. 

First, it focuses a lot on Tafasitamab, which I talked about in my last post. So it's kind of a timely video that way.

Second, he discusses the factors that he considers when he needs to help a patient make a decision about treating Relapsed or Refractory Follicular Lymphoma. Let's look at that first, since it's the title of the video.

When he was asked how he makes decisions about treating R/R FL, he said, "When the patient relapses, at that time, there are multiple factors we consider for second-line treatment. Usually, the way I think in my mind, is: Patient-related factors are number one, disease-related factors are number two, and number three (that I’ve added recently) is center-related factors."

I find this really interesting. I've seen lots of general descriptions about the kinds of factors that go into those decisions, but never in quite this way.   

First, the patient-related factors. (It's nice that he puts patients first, and not surprising if you watch the whole video). These factors include things like comorbidities -- the other health problems that a patient might have. Certain problems will mean that particular treatments are not a good idea, since their side effects can be aggressive and create even more new health problems. Second are the disease-related factors. Is the patient POD24 or showing B symptoms? An aggressive relapse might mean a more aggressive treatment recommendation.

And third is "center-related" factors. I thought it was really interesting that he added this consideration recently. Not all treatment centers offer every treatment, and something like a bispecific or CAR-T are only offered at a limited number of centers. If a patient will have a hard time getting to a treatment center, or staying at the center for a couple of weeks to be evaluated, then a different treatment might be considered instead.

Now, any decent doctor would consider all of those factors as well, and I don't think Dr. Mehta came up with all of that on his own. But I do appreciate the way he breaks it down, and how he shows the things that he prioritizes. As we consider our own treatment choices, those same factors are what we should be thinking about, or at least be prepared to ask questions about. 

The second interesting thing that Dr. Mehta talked about was Tafasitamab. As I wrote about in my last post, there are lots of Lymphoma specialists who are very excited about the newly-approved combination of Tafasitamab and R-Squared (Rituxan + Revlimid). Dr. Mehta is one of those specialists. He sees very real possibilities for Tafa-R-squared, as he calls it, becoming a very popular choice for R/R FL.

One thing I thought was interesting was that he said R-Squared was currently the most popular second-line treatment for FL. I haven't seen evidence of that, though I'm also not someone whose job it is to know such a thing. But anecdotally, it seems to me that lots of FL patients are receiving R-CHOP or B-R, especially if they didn't receive chemo as a first line treatment, as well as CAR-T or bispecifics. I wonder sometimes if doctors who work in academic medical centers, where cutting-edge treatments are developed and tested, have a different perspective on things than doctors in community clinics, where old habits tend to rule. 

Or maybe Dr. Mehta is correct, and more and more doctors are using R-squared as a second treatment for R/R FL. And if that's true, then the jump to Tafasitamab shouldn't be hard. (But, as I said last time, I have my doubts, still.) 

Overall, it's a very good video, and those of us who have already had treatment would find it very interesting. The video is about 15 minutes long, and as I said, there's a transcript available as well.

I hope you get a chance to watch or read.

Tafasitamab: New Standard for R/R FL?

I've been seeing some discussion online lately about Tafasitamab, and its promise for treating Follicular Lymphoma. There are a few people who think it could become the standard treatment for Relapsed/Refractory FL, given the success of the clinical trial that led to is approval a couple of months ago.

But all of the positive talk got me thinking more about how certain treatments get to be so popular, and why others never really seem to catch on.

Part of my thinking this ways comes from a conversation I had recently with someone about RIT (RadioImmunoTherapy). This type of treatment involves taking a monoclonal antibody (something like Rituxan) and adding a tiny amount of radiation to it. Because the antibody seeks out a protein on the lymphoma cell, the radiation gets delivered right where it is needed, so there is less damage to cells that don't need the treatment. It was all the rage when I was first diagnosed, and I know a few people who received it many years ago and who a very long remission because of it.

However, it never really caught on the United States. The rules for a treatment like this required that an expert in nuclear medicine administer it, rather than a regular clinical oncologist. To be able administer it, the doctor would need 400 hours of training (if I am remembering this correctly). So very few people received RIT, even though trials showed it was very effective and there were a few different options available.

It's an example of a good treatment not getting to patients who would benefit from it.

So when I see the headlines about Tafasitamab -- that it might be a "game changer," or a "new horizon," or a "new standard," I have to wonder if it's really going to happen. (The "game changer" headline comes from a website that uses that phrase once a week about some new cancer treatment. The articles are generated by Artificial Intelligence. That's a whole different blog post.)

The reasons for excitement over Tafasitamab are pretty clear. In the InMIND trial, the phase 3 trial that led to its approval, 548 patients were either given R-Squared (Rituxan + Revlimid/Lenolidomide) or R-Squared plus Tafasitamab. The results were great. The Tafasitamab group had an 83.5% Overall Response Rate (versus 72.4% for the R-squared group) including a 49.4% Complete Response (versus 39.8%) and a median Progression Free Survival of 22.4 months (versus 13.9 months for R-Squared). Safety was comparable to R-Squared alone. You can find a good summary of all of the side effects here.

But here's why I'm a little skeptical about Tafasitamab becoming a new standard. One of the very enthusiastic pieces I saw about this said that this new combo would be a potential replacement for patients who would be eligible for R-Squared. This makes sense, given that it was shown to be more effective than R-squared. But how many patients would be given R-Squared in the first place?

About a year ago, the Follicular Lymphoma Foundation conducted a survey of FL patients from 49 different countries. One question asked which treatments the patient had received. In that survey, only 6.2% of respondents had received R-Squared. That's not a huge number. But if that's the ceiling -- if the Tafasitamab combination is going to replace it for some patients -- I'm not sure how much of a "game changer" it's going to be for patients in general.

I want to be clear about a couple of things. 

First, and most importantly, I'm not a doctor. I remind you all of that every now and then because it's really important for you to remember. I have not formal medical training. I'm not an oncologist or a cancer biologist (or a scientist of any kind). I'm a Cancer Nerd -- a patient who reads a lot, and then thinks and rights about what I read. So why listen to me? Good question. The most important person to listen to is your own doctor. 

Second, I want to be clear that I'm not anti-Tafasitamab in any way. Just the opposite. I hope it gets to the patients who would benefit from it. I still have a lot of frustration over RIT. I think it could have helped a lot of people 15 years ago, and it was frustrating t see it not being used. (Search for "RadioImmunoTherapy" on this blog and you can see my long history of frustrated posts.)

But take another look at the FLF survey. The treatment type that most patients have had? Chemotherapy, with 60%.  

And that's not necessarily bad (it can be very effective) and it's also explainable in some ways (FL patients can live for a very long time and treatment types were limited 15-20 years ago).

But I also think it's true that FL patients can be over-treated, given more aggressive treatments than necessary. (I'm getting this from a couple of conversations with oncologists.) People get chemo who don't need chemo, and maybe could do just as well with something like Rituxan.

So why so much chemo? I  read a comment from an oncologist once that doctors are creatures of habit. If they have always recommended chemotherapy, and it has worked well, there's not much reason to change to something else. It's hard to argue with that logic. As a patient, if my doctor said "My previous patients have done really well with Bendamustine," I probably wouldn't argue.

But I think that's ultimately what this is all about. Very few of us patients argue.

And I don't really mean "argue," as in getting mad at the doctor. I mean, few of us know enough to have a conversation with a doctor that might lead to a different option. Why chemo? What are the other alternatives? Why not them? Can you recommend someone else I can talk to for a second opinion? 

It's not really about arguing so much as asking questions. And that can be hard to do when you've just been told you have cancer. 

But it's what I hope you will do, especially with Relapsed/Refractory FL, when we've had some time to think and learn and perhaps plan. We don't all have the opportunity to get a second opinion, or to question the decisions that a doctor or a health plan make for us. But if we can? That's how change comes, and how good treatments get to people who need them.

Stay informed, and stay well.

 

Happy Lymphoma Awareness Month!

September is Lymphoma awareness month. 

It's Blood Cancer Awareness month, so it's also Leukemia and Myeloma Awareness Month, too. But I think most of us are concerned with Lymphoma, so we'll stick with that.

I always struggle with the idea of "awareness" at this time of year. Like most of you, I'm very aware of Lymphoma -- my own, and of the disease in general. But this month isn't really for us. It's about helping others be more aware of it.

Part of that is encouraging others to be aware of their own bodies. That's a big part of cancer detection -- knowing when something is wrong and then getting it checked out. Lymphoma Canada has a "Know Your Nodes" quiz that's very informative. Take it yourself and encourage others to take it, too.

And if you're comfortable, share your story. You can do that with the people you know, or share it on social media, if that's something you take part in. Or you can share it through the Follicular Lymphoma Foundation's website. 

I think that's very important. There was a time, not too long ago, when people wouldn't even say the word "cancer." It made cancer seem like a shameful thing. That led to all kinds of problems -- people not going to the doctor even if they suspected something was wrong. Isolation after diagnosis and during treatment -- exactly the time when patients needed others. And then the weird gilt that so many of us feel. Silence isn't good, at least in general. But as I said, share your story if you're comfortable doing so. There's no sense in making yourself feel worse by doing something you don't want to do.

And, of course, continue to educate yourself. Learn all you can about the disease. Not everyone wants to do this, and I understand that, too. I had an oncologist who told me that some patients didn't ever want to hear anything about the disease -- just did everything the doctor said. I get that, too. I had a loved one with cancer (not a blood cancer) who just couldn't stand the idea of doing any kind of research, for lots of reasons. But if you're here reading this, you're probably someone who likes to be informed. So keep that up -- keep finding good sources of information about FL and learning what you can. I'm always happy to share what I know on this blog, and to help people be informed, but remember that I'm not a doctor, and the best source of information is your own oncologist.

Still, there's much that we can teach one another, so I always recommend listening to other patients who can provide good information. 

I recommend The FL Community Podcast, which I wrote about last month. Their latest episode is available now. The hosts focus on Managing Treatment Side Effects in this episode, discussing common FL treatments and the typical side effects that come along with each. Nicky, one of the hosts, is a clinical nutritionist, specializing in oncology patients, so she offers some tips on eating well to manage particular side effects. This is a great example of what I mean about awareness -- well-informed patients telling stories and offering advice based on real experience. It's the kind of information that we often forget about when we are planning for future treatments. 

I hope everyone has a great month. Do something extra to increase your own awareness, and to share your knowledge with others. And be sure to do something to treat yourself -- a walk in a favorite place, or a meal that makes you happy, or a day off from work -- something that brings you joy. You deserve it.

Stay well.