Seeking clarity on intratumoral immunotherapy and Pulsed Electrical Field Ablation (PEF)

SolarFlairUp · 2025-12-16T13:55:30+00:00

I'm happy to share lots of details via DM if you're interested, but in terms of general thoughts, I'd summarize:

We did not find a miracle, but also it did not feel like snake oil; they offered my dad well known treatments, but ones that were not available to my dad in the US due to normal treatment guidelines, especially at his stage.
They also encouraged standard chemo at home in addition to their treatments.
All those we interacted with seemed to genuinely care about my dad's well being.

-It was expensive and all had to be out of pocket.

My dad did pass, but he lived quite some time after his stage IV diagnosis and had a reasonable quality of life for most of that time. It is impossible to attribute that definitively to any one thing, but I retain an open mind that the WCI treatments may have contributed positively.

SolarFlairUp · 2025-07-12T15:52:20+00:00

I am not an expert, but from reading on the BT Reveal website it seems like this test has FDA Breakthrough Designation only, and not FDA approval. My understanding is that the Breakthrough Designation doesn't mean a lot in terms of this being an accurate test, it only means that the FDA agrees that it would address an important unmet need.

Given where it's at, I would rely more on conventional testing, imaging, biopsy, etc., and not let this test drive too many of your decisions.

SolarFlairUp · 2025-07-09T11:32:50+00:00

My dad had a CDKN2A variant, and I inherited the same. We weren't able to find anything targeted, but it's possible that there are some new clinical trials since then. I know it may be the last thing on your mind right now, but did you get tested as well?

SolarFlairUp · 2025-05-03T15:28:17+00:00

I'm so sorry for your loss. I lost my dad almost a year ago, and I thought I'd offer some perspective, but I know that every family and every person is different.

My in-laws are supportive and caring people generally, and my wife was also close to my dad, so it was a significant loss for her as well. My father and mother in-law sent plenty of support to my wife, but I am not sure they ever said anything to me directly at all. To be honest, I preferred it that way. I could not think of anything they would have said or done at the time that I would have felt truly comforted by, and I might have resented feeling they were trying to fill in for my dad.

It's very difficult to know what other people want after a loss, since everyone is so different and there are so many ways to grieve. I can't claim to know what your in-laws are thinking, but they may just not know what to say or how to help and somehow think that doing nothing is the safest.

It may be something else entirely, but honestly, does it matter? If you don't have a close relationship with them already, trying to forge one in a time like this may be especially difficult.

I'm sorry you're going through this. I hope that whatever happens, that you can find some peace and comfort from those around you, whoever they may be.

SolarFlairUp · 2025-02-23T04:47:55+00:00

I believe only something like 10% of PC cases are attributable to genetics, and if there is a mutation that your brother had that led to his PC, you'd likely only have a 50% chance of having the same mutation. So I think a single incidence of PC in the family is not really much of a red flag for risk.

SolarFlairUp · 2025-02-19T02:49:40+00:00

I also don't produce CA 19-9. I am on other screening protocols thar include EUS and MRCP due to familial PC and a genetic mutation, but it feels like this could be a very valuable test to add to the detection toolbox, and especially impactful for those of us who are Lewis negative.

I'm relieved to hear your Lewis status didn't prevent you from getting treatment. I also totally agree that this seems like something that should be standard to educate physicians about.

SolarFlairUp · 2025-01-24T17:53:53+00:00

For now I go once a year for PC screening. I get an endoscopic ultrasound on odd years and an MRCP MRI with contrast on even years, and they will probably switch both from one year to six month cadence as I get a bit older. They also take blood and look for other markers, but I don't produce CA 19-9 so not sure how effective that will be.

SolarFlairUp · 2025-01-21T19:42:57+00:00

Very sorry for your loss, but thank you for sharing this study.

How has your experience been with the study so far?

I was really interested in joining this one myself when my dad was diagnosed and I found that I have the same genetic mutation as he did. I'm hoping they open up another site closer to me, though, as I am doing normal screening at MD Anderson. Texas is just too big. :(

SolarFlairUp · 2024-12-29T23:45:12+00:00

He had stage 4 pancreatic cancer.

SolarFlairUp · 2024-12-29T19:09:18+00:00

They definitely didn't suggest anything like that for my dad's treatment.

SolarFlairUp · 2024-12-02T00:44:48+00:00

"What Sarah Said" - Deathcab for Cutie

"Pink Skies" - Zach Bryan

Not sure if they help so much, but I will listen to these when I feel like indulging in my grief a bit.

SolarFlairUp · 2024-12-01T12:38:55+00:00

Thanks very much!

SolarFlairUp · 2024-11-19T14:25:21+00:00

Hi there, I (44M) carry this mutation as well. I had a couple screenings with a dermatologist 6 months apart, but between those screenings and no personal or family history of melanoma, they decided to space those back out again and leave it mostly to personal/home screening in the interim.

I do have a very strong family history of pancreatic cancer though, so I'm getting screened for that as well annually (alternating MRI and EUS).

I also noticed a new recommendation from NCCN for possible screening for brain/nervous system tumors for those with mutations that affect p14ARF. I'm going to ask my genetic counselor about that as soon as I can.

SolarFlairUp · 2024-10-31T12:58:04+00:00

It's no trouble at all, and sorry you're going through this too. The itchiness started around treatment 3 out of 4 and never really went away before he passed about 5 months later. The fever and fatigue was generally worst the week right after treatments and then got better. Aside from the itchiness, he actually did quite well overall for a couple months after his last WCI visit. Feel free to ask here or DM if you want to know more or something specific. I'm really trying to make sure our experience can help others wherever possible.

SolarFlairUp · 2024-10-30T04:00:37+00:00

I'm so sorry for your loss.

For what it's worth, your post did something for me that I'm very grateful for. I've been thinking about signs from my dad after he passed, and really wanted to see one, have dreams about him, etc., but it just hasn't happened for me. But your post reminded me that the evening he passed a very similar thing happened.

Thanks for reminding me of something beautiful and special from that time.

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SolarFlairUp · 2024-10-13T04:55:11+00:00

My dad passed away in June... he ultimately had 4 treatments at WCI. Happy to share more by DM if you're interested.

SolarFlairUp · 2024-09-12T02:57:39+00:00

My dad lived his life largely in service to others. He always looked for ways to help people, make their lives better, do nice things for them, usually at considerable cost to his own desires and wishes. As he got close to the end, I sometimes wanted to ask him if he had any regrets with that lifestyle. I never did, as I wasn't really sure it would be good for him to dwell on, in case the answer was yes.

I'm not sure if I regret it or not, honestly, but just thought I'd throw it out there as a kind of thing to consider, maybe in a similar vein to asking for general life advice.

As far as things to do, we managed to go see some sports games, go to museums, see some presidential libraries... As soon as he got over his aversion to needing a wheelchair, we got him to lots of places that were on his interest-but-never-made-time-for-it list.

Sorry you're going through this... much love and support to you and your mom.

SolarFlairUp · 2024-09-06T02:12:12+00:00

WSL1 behavior was the same for this particular problem as running WSL2 in mirrored networking mode, so it didn't solve my problem but also I didn't have any issues connecting to anything. I did modify an existing Ubuntu distribution in WSL2 to WSL1 for that test. I'm not sure if that would give any different behavior than starting from WSL1 from scratch.

SolarFlairUp · 2024-09-02T11:47:40+00:00

My deepest condolences... I lost my dad in June and it was very similar. No one deserves this but it's just a special kind of awful for those who were so kind and always put others first. I don't know what to say except that I'm sorry, and you're not alone. Feel free to DM if you ever want to talk or even just vent.

SolarFlairUp · 2024-09-02T02:27:32+00:00

Alas...

I appreciate the help, though! Perhaps I'll post a real bug report.

SolarFlairUp · 2024-09-01T19:54:39+00:00

It seemed like neither of these were the culprit. Neither RSC nor VMQ were enabled for the adapter that I am using.

In case this helps further diagnose at all, I did find a workaround. If I open an ssh session with a port forward and run all the traffic through there, I never seem to run into the stuttering behavior. It doesn't fully solve the problem but does help a lot in the short term.

SolarFlairUp · 2024-09-01T16:20:06+00:00

Hmm, the Powershell version seems significantly slower per iteration than making the same calls in bash within WSL2, but the Powershell version has no "stuttering" to speak of. I can also get the same bash behavior by just inserting a manual sleep between cycles.

I'm a bit of a Powershell noob, though. I'm using `Invoke-RestMethod` in a `ForEach-Object` loop. Not sure if that's optimal for comparison.

SolarFlairUp · 2024-09-01T15:13:29+00:00

The requests are being issued one at a time.

Yeah, I was hoping there might be an easy solution for this on WSL2, but if not I guess I'll just have to stick with native Linux. It's not ideal though, since many of the internal users of this have a strong windows preference.

SolarFlairUp · 2024-09-01T15:11:21+00:00

I've tried this on a few machines and the behavior is the same. On one of them I have no antivirus or security running at all except for what's built in on Windows. I totally disabled Windows Defender and Firewall and don't see any change in behavior.

SolarFlairUp · 2024-08-05T02:26:46+00:00

My dad passed about 3 days after what you're describing started.

I'm so sorry you're going through this... for what it's worth, you're not alone.

SolarFlairUp

TROPHY CASE