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.
No comments:
Post a Comment