tumor treating fields for peritoneal meso - has anyone actually done this

I haven't seen much data on peritoneal either, which is frustrating because pleural and peritoneal are pretty different beasts. Have you asked your Cleveland Clinic team specifically about the evidence they're basing that recommendation on? That might be worth pushing on before you commit to wearing the device full-time.

I don't have direct experience with TTF for peritoneal specifically since my dad has pleural, but I've looked into this pretty deeply when we were mapping out his treatment options back in spring. The thing is, the evidence base really is different between pleural and peritoneal, and your oncologist is being honest about that gap.

From what I've gathered talking to palliative care teams and a couple of medical oncologists, TTF in peritoneal cases is still pretty experimental. The device was designed with pleural geometry in mind, so the field distribution across abdominal organs and around bowel is trickier to model. That doesn't mean it won't work, but it does mean you're looking at smaller datasets and more uncertainty about optimal placement and dosing parameters.

The wearability piece though? Yeah, it's bulky. My understanding is the vest itself isn't terrible but the battery pack situation can be annoying for daily life. People talk about it getting warm, needing frequent charging, and dealing with adhesive irritation from the electrode pads. If you're considering this before HIPEC surgery that's actually interesting timing-wise because you'd want to be off it for a few weeks pre-op anyway.

Insurance coverage varies wildly. We got quotes that ranged from "they'll cover it after surgery" to "we need prior auth with specific criteria" depending on the plan. The company does have patient assistance programs if cost becomes a barrier, though obviously that's not ideal when you're already dealing with everything else.

Honestly? I'd push your Cleveland Clinic team for their specific data on peritoneal outcomes if they have any, and ask whether they've seen benefit in your particular stage and histology type. Sometimes the answer is "we think it might help but the evidence isn't strong enough yet." That's okay information to have even if it's not what you want to hear.

Hey, I don't have direct experience with TTF since my mom has pleural meso not peritoneal, but I've been reading a ton about different treatment options since her diagnosis in August and honestly the TTF stuff came up a lot when I was trying to understand what might work for her situation.

From what I gathered, you're right that most of the solid data is on pleural cases. The peritoneal studies are way smaller which is frustrating because it's such a different cancer even though it's the same disease. My mom's oncologist at Banner in Phoenix mentioned TTF but said the evidence wasn't quite there yet for pleural either, so we decided to hold off. But I talked to another patient at one of the support group meetings at Arizona Cancer Center and her husband had actually done TTF for pleural meso alongside chemo and she said the device itself wasn't as bad as it looked. Like yeah it's bulky but you get used to wearing it under clothes after a couple weeks.

The insurance thing though, that's the real nightmare. We haven't fought that battle yet but I've heard from other families that you basically need your oncologist to really push hard and be specific about why it makes sense for YOUR case. Insurance companies don't just approve it because TTF exists. You have to show the clinical rationale.

I think the honest answer is that if Cleveland Clinic is suggesting it, they probably have reasons specific to your situation that make sense. But definitely ask them point blank what the peritoneal specific data shows, because you deserve to know if this is based on strong evidence or more of a "might as well try it" situation. Those conversations feel hard but they're worth having when you're already dealing with so much.

How are you feeling about the HIPEC decision? That's a big choice to be sitting with on top of everything else.

I've got pleural not peritoneal so take this for what it's worth, but I can tell you about the TTF side of things since I looked hard at it after my surgery in December. My oncologist at Scripps wanted me on it too and I spent a solid month digging through the data before deciding against it for my situation.

The device itself is bulky yeah. It's basically a backpack with these electrode pads you stick to your chest and they connect to a battery pack about the size of a small cooler. You're supposed to wear it 18 hours a day minimum. The company makes it sound seamless but logistics get real quick when you're trying to shower or sleep or just exist in normal clothes. Some guys I talked to on another forum said they adapted fine, one guy said it drove him nuts after six weeks.

Here's the thing with peritoneal though and I'm not a doctor so this is just what my team told me. The electrodes work best when they can get direct contact with the tumor, and peritoneal meso is spread across your abdomen lining which is different from pleural where it's more localized. The data for pleural is already thin and for peritoneal it's basically nonexistent at this point. Your Cleveland Clinic doc probably knows more than most since they see volume but that's also why they might be offering it.

Insurance approval took us three months. Appealed twice before they said yes in March. By then I'd already made my choice based on my numbers and age and where my cancer was. If you do HIPEC surgery that might change the math anyway because you're already going aggressive.

What were your chemo results looking like.

I haven't dealt with TTF myself since Joe's is pleural, but I do want to say something about the insurance piece since that's been our biggest headache with everything. We spent a good three weeks in October fighting with our Medicare Advantage plan before they approved his immunotherapy in November, and honestly the TTF approval process might be even messier for peritoneal since there's less data to point to. When your oncologist submits for something, make sure you ask them upfront what their success rate is with insurance approvals for that specific treatment. We learned the hard way that "well-established" doesn't mean your insurance will actually pay for it without a fight.

The bulky part is real though. Joe's not on TTF but he's had enough devices and patches and monitoring equipment that I can tell you anything you wear under clothes for hours gets uncomfortable fast. That's just the reality nobody really talks about in those slick brochures.

Have you connected with anyone at Cleveland Clinic who specifically handles peritoneal cases? I feel like that's your best bet for real data since they'd have seen more peritoneal patients than most places.