nanoknife IRE for pancreatic cancer

Dear PhilipJax,

Your assumptions were all correct. One tumor left in the pancreas,  no radiation ever,  and no Folfirinox for 5 months before and after the nanoknife (two months before, three after). Interestingly I have had 3 months of no Folfirinox without any tumor growth before.I have had a total of 21 Folfirinox sessions over 2 years. I regularly took one to 3 month's "holiday" with no problems up until after the nanoknife procedure.

Initially (2016) I had 3 detectable metastases, the major one in the pancreas, one on the liver and one in the umbilical area. Folfirinox cleared those metastases up quickly and none have reappeared on any ct scan. The most recent CT scan showed a slight increase in the size of the pancreatic tumor (no numbers given, just a visual assessment unfortunately) and assumed spread to the local lymph glands near the pancreas due to increased size of those but there have not been any biopsies to prove this.

My oncologist, who is not surprisingly unfamiliar with nanoknife procedures and post nanoknife ct scans, said that it was possible the increase in size of these was due to some sort of inflammation following the nanoknife procedure. I sent the ct scan disk to Dr. Birth, but he did not offer much in the way of any opinion other than too bad, sorry,  the procedure did not seem to have worked. However my CA 19-9 numbers have jumped to levels much higher than even the inital ones (they were never that high, the highest, most recent number was 441). And, the closure of the small bowel by something- a ct scan the week before showed that yes indeed the tumor was pressing on it-  leads me to suspect that it is cancer, not inflammation. I am still astonished at the rapid growth if it is the cancer. One week from pressing on to complete closure of the bowel. But I would expect the relentless Folfirinox treatments to breed a super cancer, eventually. Looks like it might be here.

I did get some relief of my miserable gut symptoms after the most recent Folfirinox so I plan to continue with that until the next CT scan in a couple of months.

I was not able to sign up for the nanoknife trial which is ongoing in Toronto because, even though I only have one tumor, I did have 3 and am still considered metastatic. That's why I went to Germany. I had hopes that at the least, it would give me some "normal" time before the chemotherapy had to be restarted. I agree, it should have been done sooner but the recommendation from Germany was to wait 3 months in order to heal from the surgery, then reassess with a ct scan. Seems like the cancer had different ideas.

Pancreatic Tumors here in Canada are not checked for mutations (at least they weren't being tested in 2016). The protocol I received was what the PhilipJax decision guide would have recommended- metastatic, healthy, so Folfirinox. And this will be continued until there's unacceptable toxicity or tumor resistance.My bloodwork continues to be good, I do have neuropathy in my feet but that seems to be the only permanent effect of the Folfirinox. It does give me heart pains though, so I suspect there will eventually be damage although tests have found none to date.

There are a couple of clinical trials in Toronto where they are identifying the mutations and I will ask for a referal to those. Once I have that information, I can pursue other chemo options. I am not happy with the thought of just going with the next line of chemotherapy (gemcitibane and Abraxane) without knowing if there will be any point to that. The PAXG regimen sounds interesting.

Thanks again. Your posts are invaluable.

A Sense Of Urgency
Canadian Socialized Medicine, Unending Problems

Dear Baloo,
          Many pc victims become complacent and are caught off-balance when the disease recurs in a fury.
          A week has passed, but you don’t report any actions taken.  Even now, there should be a sense of urgency.  Planning to look into things is not an action.
          You are not exactly following the Decision Guide.  The Guide covers what the patient (not physician) should do.
1. You should have the next therapy arranged, not just contemplated.  That means contacting other institutions.  This is the other “irons in the fire” addressed in the Guide.
2. You should have the specific genetic tests done.  Only two mutations are druggable (MSI and BRCA), so those are the ones tested.
3. And, you should be earnestly investigating treatment in the US.  I presented several options previously.  One can explore most of them thoroughly in one day of hard work.
4. Further, there is an IRE trial in New Jersey, rather close to Canada, that accepts Locally Advanced, pre-treated patients.  It appears that IRE MAY be performed laparoscopically.  You may qualify as a down-staged patient, and most costs MAY be covered.  The details and Eligibility Criteria are here, including email addresses and phone numbers:
https://clinicaltrials.gov/ct2/show/NCT03614910
          For many of your inquiries, past records will be required.  As the Guide explains, the good care manager maintains copies of all past and current paper records (Overall Condition, Surgery, PET/MRI/CT, Biopsy, Bloodwork, etc) in ONE clean, properly-oriented pdf file.  And, my website contains a sample, get-to-the-point coverletter.  So, inquiries can be dispatched on a moment’s notice.
         Thus, your inquiry to the New Jersey trial can depart today.  Time is an enemy.
          Finally, it is difficult to understand why open surgery was used in Germany to perform IRE alone.  If no surgical resection was included, laparoscopic IRE could have been undertaken, allowing vital adjuvant chemotherapy to begin almost immediately.
          As you know, numerous Canadians have followed the path to Germany blazed by Trent Hills mayor Hector Macmillan, now deceased.  But, the quality of the Birth work has not been established.
          And, the too-small Canadian trial, which Macmillan’s condemnation produced, is merely a socialized health service ploy to avoid for several years the use of IRE in regular Canadian practice.
          Time to get to work.
         PhilipJax

Dear PhilipJax,

I'm back on folfirinox, had the second treatment yesterday. My oncologist's recommendation is a ct scan after 4 to see how it's working this time around. I will probably be able to tell if it isn't well before that, I think, because the stent will start to pinch off. Folfiniox was still considered to be effective because the tumor was held in check by it before the nanoknife. If not, the second line drug is gemcitabine. It seems I was wrong and Abraxane is not included as part of the protocol. I have asked specifically that if there's some way for me to get it, I'd like it included. It might be possible to get this as well. If so I might be able to get the PAGX at a later date.

The tail of the pancreas was removed in Germany, in addition to the nanoknife. I was glad to have the nanoknife done using open surgery, as I believed from what I'd read here and elsewhere that it was superior to having it done via laparotomy or just through the skin. In addition, the hospital has a good reputation and the Germans have an excellent health care system. I did not want to get an infection at some unknown hospital, and Dr. Birth has done a lot of these procedures and you'd mentioned that that experience in performing the procedure was important.

Other Canadian institutions must follow the same chemo protocol unless there's a trial. I have been reviewing the Canadian trials to see which ones might be of use. Most of them seem to  use these new immunotherapy drugs and I need to find out which ones are re- inventing the wheel  (like with the nanoknife trial).  However, I must refuse all other chemotherapy options to go on a trial. I have not tried the gemcitibane yet. I may be able to find a trial that uses both gemcitibane and some new drug. Any thoughts? Which would be better, gemcitabine alone, gemcitabine plus Abraxane,or gemcitabine plus a trial drug?

Thank you for the link to the New Jersey nanoknife trial. I have an 11" metal stent in my bowel now, next to the tumor, which the doctor said was permanent, in addition to the gold markers that were placed and I had thought that meant no more nanoknife procedures were possible. But I will at least apply and let them decide. The stent was not in for the last CT scan, so I will send the next one.

To be honest I'm starting to lose the will to keep on going. I've poisoned  the tumor in toxic chemicals, stoned it with cannabis oil and supplements, and electrocuted it with the nanoknife that only seems to have pissed it off. The quality of my life is diminishing weekly. I find it very difficult to keep the faith that there's anything left to do that will change the inevitable outcome other than bankrupting my family with false promises of great new therapies.   I know this sounds defeatist and whiny, but I have tried my best for the past 2 years to kill this tumor off and I don't see anything truly promising left to do that will change the results of this cancer killing me other than sooner or later. Am I wrong?

Baloo

Hi, I’m replying to this group for advice as it appears to be the most educated I’ve seen with your Help Phil Fox, it’s very hard to find an oncologist who keeps on top of modern developments on clinical trails. I have a very unique scenario I need some advice with, I was poisoned wit some chemicals aug 2017, straight after I had some intense pains in my pancreas, six weeks later I had sudden onset of depression and anxiety, with panic attacks. My cea levels increased from 2.8 (from a year before the insistent) to 5 in August. I also have confirmed circulating tumor cells, from rgcc and my blood sugar is starting to rise with insulin resistance. I have had multiple Eus, Mri’s and ct scans. They have found two lesions biopsied one but no cancer cells were found. After the biopsy, I started feeling strange, my lymph nodes came up, I started having breathlessness and a cough, this went away and I’m now getting pains in my liver area. As I have no confirmed biopsy, traditional doctors will not treat me, given the above I’m absoluteky certain I have pancreatic cancer, but the tumor volume is currently so low it won’t show on a pet/mri. I don’t particularly want to wait until it grows until 1cm in diameter before I treat. Some of the alternative cancer centers have agreed to treat me with low dose chemo, I have had the chemo sensitivity test with rgcc and this I have a view on what chemos May work, 5fu and oxylplatin and capicetabin. Any views on what I should do, do I just wait or so I start low dose chemo and see if my blood results improve? I would love to get immunotherapy but I don’t know where I can get it without a confirmed biopsy? Thanks in advance.

Uncertain Diagnosis
Act Immediately; Your Life is at Stake

MrT & Everyoine:
          If you value your life, do NOT wait one more day.  Get a consult at one of the MAJOR US cancer centers.  The method to finding one is explained here:
https://www.pancreatic.altervista.org/#BestFacilities
          In addition, study the text under Care Management in the right column.  Study the Pancreatic Cancer Decision Guide found above Care Management.  The Guide explains why Clinical Trial and other decisions must be made BEFORE you start any therapy.
          Keep away from “alternate” treatment facilities – there’re bogus.  And, immunotherapy may not be suitable.  Wait till you get a diagnosis.  There are likely better therapies.
          Do not wait a day.  Get an appointment at the major center within a week.  Not every facility that calls itself a “cancer center” is indeed one.  Thus the US News list found via the link above.
         PhilipJax

Thanks Philip, unfortunately the us cancer clinics will not see me until I have a diagnosis by cytology. Which effectively means I need to wait for the cancer to grow. This might sound strange but I went to Mayo clinic, they saw a lesion, biopsied it, however no cancer came up in the cytology, however since the biopsy it feels like the cancer has spread, pain has gone from my pancreas to my liver and back. Waiting just doesn’t seem the best option when I have confirmed circulating tumor cells, and other symptoms such as sudden onset of depression/panic attacks and blood sugar increase/insulin resistance. Im aware some of these cancer Center’s are a little untrustworthy, however the low dose protocol they have been using is now finding some proof in the bigger reputable institutions with metronomic therapy with lower more frequent doses of chemo. I’ve also been doing Iv infusions with doxycyclone, this appears to be doing something, this weekend my cea dropped from 4.4/5 (different clinics) to 3.5. I can also feel a reduction in my depression which I believe is caused by the cancer.

Sorry meant high dose Vit C influsions.

If you continue with this nonsense you are doomed. Exactly, how many USNews-ranked cancer centers have you visited – those among the top 5?

It is interesting that the charlatan institutions will “treat” you, but the world leaders will not. My recommendations above still stand.

PhilipJax

I have been to Mayo Clinic. And also requested to be seen by memorial Sloan Kettering, ucla, ucsf and Mc Anderson. For diagnosis they all offer the same mri/ct or Eus. None will treat or even see me unless I have a confirmed diagnosis by histology or cytology. Circulating tumor cell, blood markers and symptoms don’t seem to be enough, as standard of care requires cytology/histology. I will undergo another mri/ct in two weeks, so possibly I will have confirmation then.

MrT,

This is incomprehensible . None of the three institutions you cite requires referral from another party. They all accept appointments based on symptoms alone – no CT’s required.

Consider rethinking your strategy and your assumptions. Return to MDACC and MSKCC. And, contact other US News top-ranked facilities.

This is so inane that yours must be a bogus letter meant to waste my time.

PhilipJax