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tumor treating fields for meso - anyone actually using this or is it still experimental

Veteran · · 36 views
So I keep hearing about tumor treating fields, TTF or whatever they call it, and my oncologist mentioned it as an option down the road if chemo doesn't hold things the way we want. I'm stage II pleural, about two months post-op from my pleurectomy at Scripps in December. The thing is nobody explains what it actually does or why they'd use it for meso instead of just doing another round of chemo.

From what I can piece together it's like electric fields that mess with cancer cells dividing, and you wear this vest thing with electrodes. But I'm not finding a lot of meso patients actually talking about it. Mostly I see lung cancer and brain tumor stuff online. Is this something that's actually approved for mesothelioma or are they still testing it. And if anyone here has done it or knows someone who did, what's the reality. Does it work. Does it suck to wear the vest all day. How long do you stick with it.

I'm not at the point where I need to decide yet but I like knowing what's coming so I'm not blindsided. My VA claim is still sitting in limbo since November so at least I've got time to figure this stuff out.

9 Replies

Patient
I've been digging into the same thing since my diagnosis last month and honestly the data on meso specifically is pretty thin compared to what's out there for glioblastoma. Have you asked your oncologist whether they're talking FDA-approved use or more of an off-label situation for your histology type?
Attorney ✓ Expert Response
Not a lot of meso patients talking about TTF yet, which makes sense because the FDA only cleared it for pleural meso in May 2019 under the brand name Optune Lua, and the trial data that got it there, the STELLAR trial, was showing median overall survival around 18 months which honestly was better than what most folks were seeing with standard second-line chemo alone at that point.

So it's not experimental in the sense that it's still in trials. It has a clearance. But your oncologist is probably framing it as a "down the road" option because the current evidence base puts it most clearly in the maintenance or second-line setting, not immediately post-op when you're still responding to first-line treatment.

The vest thing is real and it's a commitment. Patients in the STELLAR trial were wearing the device roughly 18 hours a day. That's not a typo. The idea is the electric fields interfere with cell division specifically, so consistent exposure matters. I've talked to clients who found it manageable after the first few weeks and others who really struggled with the skin irritation under the electrode arrays, especially in summer heat.

On the VA claim, that's actually worth flagging. If your TTF device ends up being part of your treatment plan, the coverage question gets complicated depending on whether VA authorizes it directly or you're routed through community care. Durable medical equipment coverage for TTF has been inconsistent across payers and I've seen that play out in ways that surprise people.

Consult an attorney for your specific situation, especially once that VA claim moves.
3 found this helpful
Veteran
Haven't gone that route myself but my oncologist mentioned it too, said it's approved for meso but not a ton of data yet on how well it actually works compared to standard chemo. Might be worth asking your doc straight up what the success rates look like for pleural cases specifically.
Attorney ✓ Expert Response
The VA angle you mentioned is actually relevant here in ways that might not be obvious. Coverage for TTF through the VA has been inconsistent depending on which VAMC is handling your claim, and some facilities have been slower than others to update their formularies after the 2019 clearance. I've seen situations where veterans got the treatment approved through their private insurer before their VA claim even resolved, so it may be worth running both tracks at once rather than waiting on one to finish.

Also on the mechanism, your instinct about cell division is basically right. The electric fields disrupt mitosis specifically, so they're interfering with cells as they're actively dividing rather than just poisoning them the way chemo does. That's part of why the thought is it could work alongside chemo rather than instead of it. The STELLAR trial that got it cleared showed median overall survival around 18 months with combination use, which got people's attention.

Talk to your own oncologist about your specific situation, of course, but the vest compliance piece is something worth asking about directly. Wearing it 18 or more hours a day is the target and that's where a lot of patients struggle practically.
3 found this helpful
Veteran
Yeah that's actually helpful to know, the dual track thing. My VA rep keeps saying they're reviewing everything but it's been three months now and I haven't heard squat. So you're saying I shouldn't just sit around waiting for them to make a decision on the whole claim before asking about TTF coverage specifically. That makes sense, I can push on both sides at once instead of letting one hold up the other. Did you see that happen a lot with meso cases or is it more of a general VA thing.
Attorney ✓ Expert Response
The regulatory status question is a real one and worth understanding before you're in the room making decisions. TTFields got FDA approval for unresectable pleural meso back in May 2019 under the Humanitarian Device Exemption pathway, so it's not experimental in the traditional sense, but the HDE designation means the approval bar is different than a standard PMA device. The STELLAR trial published in 2019 was the primary data behind that approval, 80 patients, median overall survival of 18.2 months when combined with pemetrexed and cisplatin. Small trial but the numbers were notable enough that FDA moved on it.

What I see in practice when clients are working through treatment decisions is that the vest situation is genuinely disruptive to daily life. You're supposed to wear it something like 18 hours a day to get the benefit. Skin irritation at the electrode sites is the most common complaint. Not dangerous, just annoying and requires consistent attention.

On your VA claim sitting since November, that's unfortunately not unusual for meso cases, but there are some things that can move the file. If your service records document asbestos exposure at specific duty stations, getting those into the record clearly matters. Camp Lejeune cases have a somewhat different pathway than shipyard or base exposure cases depending on jurisdiction.

Definitely bring the TTFields question to your oncologist with the STELLAR data in hand and ask specifically how it would interact with your post-pleurectomy anatomy. That's a conversation worth having before you need to decide.

As always, consult an attorney for your specific situation regarding the VA claim side of things.
3 found this helpful
Attorney ✓ Expert Response
The regulatory piece here is actually pretty specific and worth knowing. TTF got FDA approval for pleural meso in May 2019, so it's not experimental anymore, at least not in the traditional sense. The approval was based on the STELLAR trial which showed median overall survival around 18 months when combined with chemo, which was a meaningful improvement over historical numbers for this disease. So your oncologist isn't floating a long shot here.

What I've seen on the legal side, and this comes up constantly with VA claims, is that insurers and the VA both sometimes treat TTF as if it's still investigational even though it isn't. The relevant coverage code is typically E0766 and there's been real friction getting that covered. If your VA claim is already in limbo since November you may want to flag TTF specifically when you eventually get a hearing or decision point, because coverage disputes around it are winnable but you have to ask.

On the practical side, from what clients have described to me, the vest situation is more manageable than it sounds at first. The bigger adjustment is just... wearing it consistently. The trial required 18 or more hours a day for it to work the way the data showed. That part I can't sugarcoat.

Your situation at stage II post pleurectomy actually puts you in a reasonably good position to be considering this conversation now rather than in a crisis. That matters more than people realize.

Consult an attorney for your specific situation, especially on the VA claim side of this.
2 found this helpful
Medical ✓ Expert Response
The emotional weight of waiting on both a VA claim AND a treatment decision at the same time... that's a lot to carry. I've sat with clients in exactly that spot and the uncertainty about what's coming can honestly feel harder than the thing itself.

Something nobody's mentioned yet is the practical daily reality of TTF for the people I've worked with. One patient I met through our Wednesday group at Moores Cancer Center described it as "like wearing a life vest that never comes off." The 18+ hours a day compliance piece is real, and it affects sleep, intimacy, just feeling like yourself. That's worth thinking about now so it's not a shock later.

Journaling your questions before appointments has helped a lot of my clients get real answers instead of the "we'll cross that bridge" response. Write down specifically what you'd need to feel okay about a device like that in your daily life.
2 found this helpful
Veteran
Yeah that "life vest that never comes off" thing is exactly what I need to know, not the clinical stuff. Eighteen hours a day is a lot. I'm already dealing with post-op restrictions and honestly the idea of being tethered to something for that long when I'm trying to get my strength back... that's the real question nobody asks about. Did your client stick with it or did they bail? And how'd it actually affect the cancer or did they ever find out.

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