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tumor treating fields for meso - how do they actually work and is Joe a candidate

Family · · 2,658 views
So we got told about TTFields as an option for Joe and honestly I had no idea what they were talking about at first. Turns out it's this device called Optune that sends these electrical waves through your body to mess with cancer cell division. Sounds kind of wild but the FDA approved it for meso back in 2019 so it's not experimental or anything.

From what I understand the patient wears these electrode pads under their clothes and the device runs most of the day. It's supposed to work alongside chemo, not instead of it. Joe's oncologist Dr. Patel at Moffitt down here in Tampa mentioned it could be part of his plan since he's Stage III and just started immunotherapy in November.

The thing is insurance can be picky about covering it and you need to be able to tolerate wearing the vest basically all day which honestly sounds annoying. But if it could give Joe more time or better results I'm willing to figure it out. I spent thirty years teaching high school biology so I get the cellular mechanics of it which actually helps because I can ask smarter questions.

Has anyone here actually used TTFields with their meso diagnosis? Like what was the day to day like and did you see real results? I'm trying to figure out if this is something we should push harder for or if we're okay with just the immunotherapy route...

11 Replies

Patient
I haven't done TTFields myself yet, but I'm in that exact evaluation phase right now so I've been digging into the literature pretty intensely. The NIESG-19 trial from 2019 showed median overall survival benefit of about 5 months when TTFields was combined with chemo for mesothelioma, which is honestly why it got FDA approval. But here's what nobody tells you upfront: that study was mostly pleural cases and the peritoneal data is thinner, which is my situation.

Your background in biology is going to be SO helpful because most people I've talked to get lost in the mechanism. The electric fields disrupt microtubule assembly during mitosis, basically. What I'm trying to figure out right now is whether the benefit holds up as well with immunotherapy versus traditional chemo, since that's what my team at Cleveland Clinic is leaning toward for my HIPEC surgery follow-up plan. The studies I'm finding don't have great long-term data on TTFields plus immunotherapy combinations yet.

Day to day wear sounds legitimately uncomfortable. I read one patient forum post from someone who wore it for eight months and they mentioned the adhesive irritation got worse over time, especially around the ribs where you're constantly moving. But she also said she'd do it again if it meant the progression numbers.

The insurance piece is real. I've already started documenting everything about my diagnosis and staging because my oncologist warned me the coverage denials for TTFields are common and you basically have to appeal with clinical justification. Did Dr. Patel mention whether your insurance is likely to cover it, or are you in that unknown phase still?
Family
Oh man, I'm glad you're asking about this because honestly I had to do a ton of research when they mentioned it for my mom too. She's Stage III pleural and they brought it up back in September, right after her diagnosis.

So the thing that really helped me understand it was talking to her oncologist for like twenty minutes straight about the actual mechanism, you know? Like I get the general concept of disrupting mitosis but I wanted to know the specifics before we committed to something that sounds like wearing a medical device under your shirt all day. Turns out it's not as sci-fi as it sounds once you break it down.

My mom decided to go with it alongside her chemo and honestly the first month was rough. Not because of side effects really, but just the logistics of it. The pads have to stay in contact with her skin, she had to wear it like 18-20 hours a day, and getting dressed in the morning became this whole thing. I'm a teacher so I get routines but this was different. She was self-conscious about it under her clothes even though nobody could really tell.

That said, she's actually seeing decent response. We got scans done in late November and there was measurable shrinkage. Is that the TTFields or the chemo or both? Honestly who cares, something's working. But I will say insurance fought us hard on coverage. We had to get her oncologist to submit like three different appeals before they approved it. Took almost six weeks.

The day to day stuff nobody really warns you about: the electrode pads sometimes irritate her skin, she has to charge the device nightly, and there's this weird ritual of replacing the pads every few days. Also she can't have certain kinds of MRIs which actually complicated one of her follow-ups.

But if Joe's in decent shape otherwise and his oncologist thinks he's a good candidate, I'd push for it. Worst case scenario it doesn't work out and you stop. Best case you get what we're seeing with my mom. The annoying part is temporary. The cancer is the real problem.

What's his overall stamina like right now?
Medical Expert Response
Your biology background is going to serve you well here because the mechanism really is fascinating. TTFields work by disrupting mitosis (cell division) through alternating electric fields tuned to a specific frequency. Cancer cells dividing rapidly are more vulnerable to this disruption than normal tissue. The STELLAR trial published in 2021 showed median overall survival of 18.2 months when TTFields were combined with chemotherapy, compared to historical controls around 12 months for chemo alone. That's a meaningful difference.

The Stage III piece matters. Most of the trial data that supported the 2019 FDA approval came from patients with pleural mesothelioma who had already received or were receiving platinum-based chemo. Joe's situation with immunotherapy is a bit different and honestly that combination is still being studied, so the honest answer is that the evidence base there is thinner.

Day to day from what patients describe, the biggest challenges are skin irritation under the electrode arrays and the sheer commitment of wearing the device 18+ hours a day. Compliance matters because the data suggests patients who wear it more hours see better outcomes.

On insurance, Novocure (the manufacturer) has a patient services team that handles appeals and prior auth pretty aggressively. A lot of families don't realize that's available.

The fact that Dr. Patel at Moffitt is already raising it as an option is actually a good sign because Moffitt has real experience with this device in meso specifically. I'd ask him directly how he'd sequence it with the immunotherapy and what his patient experience with compliance has looked like. Talk to your own oncologist about what the right combination looks like for Joe's specific staging and treatment history before committing to anything.
4 found this helpful
Family
Joe sounds like he's got a solid team at Moffitt, that's a really good place. We actually went through this same decision back in late November when they first mentioned TTFields to us and honestly it took me a minute to wrap my head around it too. The biology part made sense once I thought about it in terms of disrupting cell mitosis, but the practical side was what worried me.

We decided to go for it and Joe's been wearing the Optune vest since early December. Here's the real talk though... it IS annoying. Like he's got these electrode pads under a tank top and then the vest over it, and yeah he can wear regular clothes over it but it's bulky. In the summer here in Tampa that's gonna be rough, I'm not gonna sugarcoat it. He wears it about 18-20 hours most days because some days he just needs a break, and his oncologist said that's still therapeutic enough.

Insurance fought us on it for like six weeks. We had to get prior authorization and submit all kinds of documentation about why immunotherapy alone wasn't sufficient. They finally approved it in mid-January. The device company helped walk us through all that paperwork which was actually way more helpful than I expected.

As for results, it's still early for us but his last scan in late January showed the tumors aren't growing, which is what we're hoping for at this stage. Can't say if it's the TTFields or the immunotherapy doing the work or both, but honestly I don't care which one it is as long as something's working. Your teaching background is gonna help you understand the mechanism way better than most people so you'll be able to ask good questions with Dr. Patel.

What's Joe's tolerance been like so far with the immunotherapy side effects?
Attorney Expert Response
Not my usual territory since I focus on the legal side of mesothelioma cases, but I've sat across from enough clients going through treatment decisions that I've picked up quite a bit on this one.

The FDA clearance you mentioned came through in May 2019 based on the STELLAR trial data, which showed median overall survival of 18.2 months when TTFields was combined with chemotherapy. That's meaningful. And Dr. Patel at Moffitt is about as good as it gets for mesothelioma, so if she's raising it as an option for Joe's Stage III situation, that's worth taking seriously.

On the insurance piece, this is where I actually do have direct experience. Coverage disputes over TTFields come up constantly for my clients. The device manufacturer, Novocure, has a dedicated reimbursement team and they're genuinely aggressive about working with insurers. If Joe's coverage gets denied, that denial can typically be appealed and we've seen prior authorization processes move faster when the oncologist submits detailed clinical justification tied to the specific diagnosis code. Some states also have coverage mandate protections that could apply depending on your plan type.

The day to day tolerance question is one I'd push Dr. Patel on pretty specifically. From what clients have told me, the compliance burden is real but manageable for some people and not for others, and that seems to depend a lot on the individual.

As always, consult an attorney for your specific situation if any of this treatment path raises questions about your legal options around asbestos exposure.
3 found this helpful
Family
Oh wow, thank you for that context about the STELLAR trial numbers - 18.2 months is actually really helpful to know and I appreciate you pulling that detail. Yeah Dr. Patel has been amazing, she explains things in a way that actually makes sense instead of just throwing medical jargon at us. The fact that you've talked to enough clients about this stuff means a lot coming from someone who sees the bigger picture. I'm definitely going to ask Dr. Patel more specifically about what the data shows for Stage III patients like Joe and whether she thinks the insurance headache is worth pushing through.
Medical Expert Response
Your biology background is genuinely going to serve you well here, because the science behind TTFields is actually pretty elegant once you dig into it. The electrical fields disrupt mitotic spindle formation during cell division, so rapidly dividing cells like mesothelioma cells are preferentially affected. The STELLAR trial published in 2021 showed median overall survival of around 18 months when TTFields was combined with chemo, which was meaningful compared to historical controls.

The day to day piece is real though. I've worked with patients at our cancer center who found the vest manageable and others who found it genuinely exhausting to maintain. Skin irritation under the electrode arrays was the most common complaint I heard, and rotating pad placement helped a lot. Joe being Stage III and already into immunotherapy is worth a specific conversation with Dr. Patel about sequencing, because the data on combining TTFields with immunotherapy specifically is still accumulating.

On the insurance piece, Novocure (the company that makes Optune) has a patient services team and in my experience they're pretty tenacious about prior auth appeals. Definitely worth letting them do the heavy lifting on that.

If persistent anxiety or overwhelm is showing up for either of you while processing all this, talking with an oncology social worker at Moffitt would be worth asking about. Sometimes having a dedicated space to process the weight of these decisions helps people think more clearly about the medical ones too.
3 found this helpful
Patient
Man, I gotta say the insurance piece is real and nobody talks about it enough. When I did my EPP surgery back in February they were already talking about TTFields as a follow-up option, and I asked straight up about coverage. Turns out my Medicare supplement actually covers it but only if the oncologist submits it as part of the treatment plan, not as a standalone request. Took three weeks of back and forth to get approved.

The day to day thing though, that's the part I wanted to ask you guys about too. I'm used to working with my hands so sitting still all day wearing a vest sounds like it'd drive me nuts, kinda like being parked in the garage when you wanna be on the road. But Joe's got that immunotherapy running already which is good because from what Dr. Chen was saying, TTFields works better alongside chemo or immuno.

One thing I'd check with Dr. Patel - ask if there's any data on how long patients actually stick with it. Like do people keep wearing it for six months straight or do they bail after a few weeks because it's uncomfortable. That's the real world stuff they don't always mention in the clinical trials.
Family
Oh Carl, thank you for that real talk about the insurance angle. Three weeks sounds brutal but I'm glad your supplement came through. That's actually super helpful to know about the oncologist needing to bundle it into the overall plan rather than requesting it separately. I'm gonna pass that exact tip to Dr. Patel's office because that's the kind of practical detail that makes a difference.

And hey, you cut off there but were you about to tell us what the day to day was actually like wearing it?
Family
That's such a smart question to ask upfront. I'm glad you're digging into this because TTFields really is one of those treatments where the day to day stuff matters as much as the science, you know?

Joe hasn't started it yet but we had the same conversation with Dr. Patel back in December and honestly his whole team was really honest about the pros and cons. The electrode pads are under a vest and yeah it does get warm, especially down here in Florida where it's already humid. But what sold me on at least trying it was that the data shows it works best combined with immunotherapy, which is exactly where Joe is right now. Like the timing could actually be ideal for him.

Insurance was our biggest headache though. Our plan rejected it the first time in January and we had to appeal with medical documentation from Moffitt. It took almost six weeks to get approval but they did eventually cover it. Just a heads up that part of the process is frustrating and slow.

The wearing it part... Joe says it's annoying but manageable. He wears it under regular clothes, takes it off to shower, runs it overnight mostly. Some days he forgets he has it on which I think is actually a good sign. He's been on it for about three weeks now alongside the immunotherapy and we won't know the real results until his next scan in March.

What I will say from my teaching days is that sometimes you don't know if something works until you try it. And if insurance covers it and Joe can tolerate it, the potential upside seems worth the inconvenience. Does Dr. Patel think Joe's a good candidate medically speaking?
Veteran
Got my pleurectomy done August so I'm not on TTFields myself, but I talked through it pretty hard with my oncology team at Eastern Virginia Medical Center before we locked in my treatment plan. They said the data on meso specifically is still building out compared to glioblastoma where it's been used longer. Stage III is where they tend to recommend it most.

The wear time is real. One of the guys I connected with through the VA support group wore it for about four months alongside his chemo regimen. Said the electrode pads irritated his skin after a while and the battery pack got heavy during the day, especially in summer heat down here in Norfolk. But he stuck with it because his scans showed decent response. Insurance fought him hard on it though, took three appeals and his oncologist had to write a letter stating medical necessity before they approved it.

Your guy's got good support with Dr. Patel asking about it early. That's the right move. One thing nobody told us upfront is you gotta be consistent with the wear schedule or the whole thing doesn't work. Can't just wear it when you feel like it. If Joe's willing to commit to 18-20 hours a day for several months then it might be worth pushing for. If he's gonna skip it half the time then probably not worth the hassle.

The immunotherapy alone is solid though. Don't feel like TTFields is mandatory. It's an add-on option.

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