Nanoknife for pancreatic cancer

Hi ncteacher,
Just wondering where you are receiving treatment. My sister is at MSK and had 12 rounds of Folfirinox with considerable tumor shrinkage, now on oral capecitabine. Also not a candidate for surgery (Stage IV with vessel involvement) . She is enjoying being able to eat again and expressed tears of joy to be able to taste her food.
She does have some neuropathy and I question why her onco has discontinued her infusions other than the fact that "standard of care" is 12 rounds Folfirnox, and her feeling so ill after treatment every 2 weeks. Did the elimination of oxaliplatin result in better quality of life between treatments as well as decreased neuropathy?
I thank you and every contributor here and wishing all of you the best of luck in your journey.

I am under care at Atrium Health Levine Cancer. My oncologist's training includes work at Mayo and MD Anderson; the cancer center director is also Mayo trained. This place is growing fast; it has the only proton beam therapy in the Carolinas. Brand new. It's connected with Wake Forest Cancer Center and the med school there.

Re the oxaliplatin, my oncologist said it used to be standard to administer it for at least 12 cycles, but he preferred to stop after 8 because otherwise it could cause extreme neuropathy. He told me, basically, "I'm sure I crippled people early in my career." I am fortunate that except for cycle 1, which was rough, I really haven't struggled with chemo side effects. We continue to get good results, which is why we're continuing chemo. It tires me out for three days or so, and then I'm pretty much back to normal. I am walking most days, doing some at-home volunteer work, working as a "reading buddy" at our local library, and other activities. Again, I am fortunate, and I realize that.

@waltsocal , the reason I inquired whether the OP's husband had asked why chemo would stop after 12 rounds and whether a bone-marrow booster had been administered is also why I mentioned my conversation with my palliative MD. There seem to be so many variations on treatment for pancreatic cancer. I know there are many people on this board who've stopped chemo after 12 and are comfortable with that decision. I know there are many other people on this board who have continued beyond the standard 12 and are comfortable with that. Others are looking at clinical trials, radiation, different types of surgery...you name it. It truly is an individual prescription and an individual decision. That's what makes this so tricky. I would not presume to advise or suggest or insist that anyone do anything I mention in a post. That's why I asked whether they'd asked. Nothing more. I apologize if that wasn't clear. I think I'll stop posting for a while. Thanks, all.

@ncteacher

My comment was not at all meant to be specifically for you, but rather the ongoing thread about chemo for everyone. Your comment just happened to be the last one on the thread at the time I read it. Sorry that you took it as "you"; my mistake. I was trying to do the "in general"....

Wish everyone could do chemo with little to no side effects.

I'm always trying to be cognizant of the first time reader and how they may view a long thread on chemotherapy. Sometimes, I think people (not you) forget that it is a very individualized cancer and that there are many "best ways" to approach it.

My only objective was to ask others who seemed to be pushing chemo as the only way - just wanted to ask people to be gentle with newcomers that are still learning and aren't as familiar with all the in's and out's of all of our journeys.

Each person's best choice may be different.

@waltsocal 's experience was the second very negative, adverse (hospital-admitting) reaction I've heard on this forum to Gemcitabine and/or Abraxane. I've also read here at least two members posting reactions to Folfirinox that required hospitalization. It honestly sucks that Walt was one in both camps -- buy that man some lottery tickets!

But Walt makes a very good point. I confess to being one of those who might have over-advocated treatment, or at least underestimated effects on other people. A widely held assumption is that if you even slogged your way through Folfirinox and a Whipple, that Gemcitabine + Abraxane is a walk in the park. Obviously incorrect!

Another member here has mentioned the availability of tests that can be taken before chemo to determine if you have an allergy-like risk of developing adverse reactions to chemo before getting the actual drug. I don't know anything about them, but hope to look it up when I have time. If anyone else has experience or info, please share!

My dad's doctor told my dad that treating his mesothelioma with new immunotherapy drugs was a walk in that park compared to old-fashioned chemo. Although there was no vomiting, nausea, or hair loss, the immune reaction hospitalized him twice and almost killed him.

So, in a nutshell, I would advocate asking for the reaction-sensitivity tests if available, starting chemo at lower doses, and/or maybe introducing one new drug at a time in the chemo regimen until tolerance is established.

For @ncteacher and others on Folfirinox or similar combinations, I would be interested if you could ask your oncologist about possible drug substitutions (Note: Ask ABOUT them, not necessarily FOR them!).

In particular, due to the well-known neuropathy caused by Oxaliplatin, could they substitute Cisplatin for it?

Could they substitute oral Capecitabine for the 5-FU? That would eliminate the take-home chemo pump and maybe also the Leucovorin (Folinic Acid) IV while still providing some systemic 5-FU.

We know they're already substituting Onivyde (liposomal irinotecan) for irinotecan and calling it NALIRIFOX.

Although the other combinations may be less well studied, they (Cisplatin and Capecitabine) are approved and considered less "toxic" on their own compared to the ones I proposed replacing.

Because they are approved, they "could theoretically" be used off-label in such combinations.

I did not get much beneficial effect from Folfirinox, and since my GAC regimen may be losing its effectiveness, he has proposed a possible regimen using Onivyde + 5-FU (= NALIRI). I don't think they would do as much good on their own as they would with a platinum agent added.

If I could lose the neuropathy (Oxaliplatin) and the take-home (5-FU) pump but still get similar ingredients, with a hopefully similar outcome and much improved quality of life, I would try it (NalCapCis?). (Note: I have no medical training and am not recommending this as a regimen for anyone else!!!)

But visits with the actual oncologist (as opposed to PA or NP) are few and far between, and they don't always answer questions you send them by email. I'm hoping that if more people from this forum have an opportunity to ask their own oncologist(s), we might get a few actual answers and expert opinions to share and discuss here.

Thanks everyone!

Markymark, if your current chemo treatment is genuinely waning, are you seriously looking at getting into a clinical trial?

I've been looking into trials since the recurrence was diagnosed 18 months ago. They can be _that_ complicated to get into! About 4 denials or failures over that time frame. Lots of frustrations with trial groups that don't return phone calls or emails. IRBs with so much bureaucracy they can't get out of their own way with compassionate use exemptions...

Anyway, I'll have another CA19 test and result this Friday and new scans a week later to get a better idea how I'm responding to the GAC.

The higher levels and bad scans after two reduced-dose treatments and one missed treatment have reversed since restoring the full GAC dose at my last 4 treatments, but I'm not yet back down to the pre-reduction CA19-9 levels.

One oncologist who was planning a trial told me last November I was responding so well to the GAC that it would be unethical to take me off it for a trial with unknown effectiveness. It's a weird balancing act to get "just sick enough" to qualify for a trial and not too sick to qualify or risk letting your health get to the point of no return.

I've got my name in for a couple open trials right now, but only one is even remotely realistic at present. I hope to have news on that in the next couple weeks. I'm hoping my recently improved CA19 doesn't disqualify me again.

On the original topic of IRE/NanoKnife, I watched this video from 2017 last night:
https://youtu.be/VhwiB3ftAlI?si=AE7b8rcgLKjCzmpE
It discusses the "embarrassingly high" mortality rate from one study, and makes it sound like even the percutaneous procedure is a lot more invasive and risky than I imagined.

I too have been pursuing clinical trials with the hopes to do one BEFORE first and second line treatments stop working. My recent scans have disqualified me and placed me on waiting lists. Of all that I have applied to/consulted with, Biooncological Institute (just outside of Charlotte) was great. They are doing many trials including Revolution Medicine KRAS trials. The can give you direct contacts if you need them.