Nanoknife for pancreatic cancer

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.

Hi
Could you tell me what the C is as in GAC? My husband’s trial ended after 2 and a half years and the trial drug is no longer available. He still gets the gemabraxane but 19-9 is increasing.

Yes cisplatin. I was getting all 3 up until last week. @gamaryanne wrote recently that cisplatin only works for some mutations (BRCAs and PALBs, I believe). I did some online research and it seemed to beck up her post. markymarkfl responded that he thought the cis did boost effectiveness for his pancan (and he doesn’t have those mutations). I spoke with my oncologist and cited some clinical evidence for its overall effectiveness for many mutations, but he said the phase 2 of the trial wasn’t randomized, so he’s not 100% sure if it’s effective for other mutations like ATM, etc. I asked to try my infusion without cis so we will see if it impacts my CA19-9. I enjoyed feeling a bit better just being on GA last week rather than GAC, and I dint know if this has any relevance, but for the first time this year of chemo I developed neuropathy in my foot. it’s a bit better today but still there. My arrhythmia is better and only seems to be accelerated, but with the usual ectopic beats I was getting with my chemo before.

Hi
Could you tell me what the C is as in GAC? My husband’s trial ended after 2 and a half years and the trial drug is no longer available. He still gets the gemabraxane but 19-9 is increasing.

Sorry to hear drug isn’t available?? You are implying it was effective for him? What is the name of drug, if I may ask?

Pamrevulab. We will never know if he was a super responder to the drug - but he started his first treatment in May of 2022 and the trial ended in August. Most people do not go 27 months on Gemcitabine and Abraxane alone with stage 4 metastasis. We do think the addition of the trial drug made a difference for him.
His tumor shrunk by half and stayed there and his 19-9 was normal until this past June- creeping up very slowly now.

Thank you gracect. That’s certainly disappointing. Offering info on new drugs is not my forte. I only saw that it looks like FDA is approving it for some uses but not for pancreatic cancer. I would pose the question to @stageivsurvivor to see if he has any suggestions on how one might try and proceed to see medication could be approved ; or if there is something similar to it that’s already been approved? Praying for good results for you.

If an investigational new drug that was part of a trial showed evidence that it proved efficacious as determined likely by the RECIST version 1.1 guidelines which is a common measurement standard for tumors and the trial ended or was terminated, the principal investigator of the trial can write an Individual Patient Investigational New Drug application and submit to the FDA for approval on compassionate need. This is what was done in my case when the trial was terminated and it was shown I had a complete response to the trial drug. The FDA acted on the application within 24 hours and I was allowed to continue receiving the drug under compassionate use. The manufacturer agreed to continue supplying the drug and I continue to be closely monitored 8.5 years after the trial was terminated.