Nanoknife for pancreatic cancer

I don't know anything about Nanoknife except what I've read on this board, and I'm certainly no medical expert of any type, just a patient. But I noticed that you mentioned that your husband's oncologist was stopping the modified Folfirinox chemo after 12 cycles because of concerns about bone marrow. I have stage 4 adenocarcinoma, inoperable due to blood vessel involvement. I just completed chemo cycle 23 last week. Why are they stopping his after 12? I will say that my oncologist discontinued oxaliplatin after cycle 8 in order to avoid neuropathy. I've also been on a reduced dosage the entire time. But we have continued because we're getting results and because otherwise it might give the cancer a stronger toehold. So it might be worth asking. Here's the other thing I wanted to ask: Has your husband been given injections to activate and boost the bone marrow and prevent infection? There are several versions. One is Neulasta; the one I get is Udenyca. It's given a minimum of 24 hours after the 5FU pump shuts off. Depending on what the bone marrow concern is, that injection might help him. Again, it might be worth asking if you haven't already.

FWIW, we were talking with my palliative MD today about these sorts of issues. I currently have some options to discuss as well. He said that there really is no clear-cut one-size-fits-all pathway for pancreatic cancer therapy. It is such an individual disease, with all sorts of variations. And it's extremely virulent as well, which makes treatment challenging. He said that it requires a lot of back and forth conversations, hallway exchanges between MDs, tumor boards, debates, etc., to arrive at the best plan for each patient. It's frustrating to me, and I'm sure it is for you as well because it's hard to make decisions. But we just have to keep asking questions, doing our research and hopefully getting our MDs together to assess and discuss so they can come up with a plan. I hope all works well for you all!

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.

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.

Morning Everyone,

Just a "different perspective" on everyone is different.

I had Folfirnox ( with very little side effects) pre Whipple procedure for 3 months (March to May 2023); had the Whipple procedure (with complications); tried to get back on Folfirnox again after surgery. After only one treatment, it put me in the hospital with rapid weight loss, dehydration and lots of pain. After being bedridden for 3 weeks after the hospital and taking four months to get my strength back, it took me til 5 months before I tried chemo the 2nd time. This time with G&A. The results were the same, dehydration, 20 pound weight loss and bedridden - and I'm in the process of trying to recover (yet again) the strength that I had before chemo.

My only thought to pass on to everyone; chemo is wonderful when it can help prolong your life in a productive way. As we always say, this really is an individual cancer that impacts everyone in different ways.

My only suggestion on future comments; try to be a little gentler with people when recommending they try different types of chemo at different levels. Sometimes, even when people would like to be on chemo, the negative impact it may have on some individuals is way too much of a burden to carry. (Knowing you are stage 4)

We're all trying to help one another here. Sometimes, not continuing on with chemo is a tough enough choice by itself. Each individual needs to make their best choice. "Gentle" suggestions can be helpful. Other times, trying to push someone a certain way to "help themselves" is difficult to read when you have already made a tough choice.

Prayers for everyone......