nanoknife IRE for pancreatic cancer

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RE: nanoknife IRE for pancreatic cancer

by MRTAYLOR on Fri Oct 12, 2018 01:34 PM

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Hi Philip, I can assure you I’m not making this up. Just to be clear, I’m being seen by Mayo Clinic in Minnesota, the Royal Marsden (a uk cancer hospital) and a regular gastro in Hong Kong where I live, where I get scans and Eus for diagnosis. All the other top 5 hospitals I’m sure would see me for diagnosis, but I’m trying to find a hospital somewhere in the world that would aim to treat me without a biopsy, I have a fear that when Mayo took a biopsy the cancer spread. Shortly after the biopsy my symptoms in my pancreas cleared and I’m now getting sensations in my liver, back. I’m aware it’s an odd one. Standard of care demands I need wait until I have a confirmed biopsy before treatment can be applied. I continue to get scans and Eus every two months. But this seems to be backward when you can do circuiting tumor cell tests and chemo sensitivity tests.

RE: nanoknife IRE for pancreatic cancer

by DavesGirl70 on Fri Oct 12, 2018 06:38 PM

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Dear PhilipJax,

I have been reading and soaking up all of the info that I can from your posts and your website, amongst other sources. We got biopsy confirmation yesterday (from liver mets) that my partner has metastasized adenocarcinoma "most likely" of pancreatic origin (I guess the pathologist didn't know about the 3.1x2.7 mass on the tail of his pancreas). His PCP has been a nightmare to deal with/get answers from so we are relieved to finally be referred to our nearby cancer centre (hoping to also have access to another proximal cancer centre that is attached to an academic institution as well), hoping to hear from them today to have an appointment next week. I know that time is of the essence here! 

I am sorry if this question has been answered, I am rapidly reading as much as I can to try to prepare for the first oncologist appointment. We are Canadian. Given his status I can see that FOLFIRINOX is the recommended first line of treatment in your decision guide as well as the other guidelines you link in your website. But I've seen the various other trials involving combos of gemcitabine + nab-paclitaxel (+ cisplatin, and/or + capecitabine) and these appear to be very promising with better response rates/overall survival/possibility of complete response as compared to those I've seen for FOLFIRINOX (however, I understand the importance of study size). Wondering if you might know/can explain the nuances of why FOLFIRINOX is still the recommended first line? Is it because of the large study sizes confirming efficacy over the smaller (but very promising) study sizes?

Dave is still in good health all things considered: 54 years old, blood labs good, no CA19-9 test yet, CEA is in the 3500s (though not sure of units used in report), "several" liver mets throughout, 3.1x2.7cm mass in tail of pancreas, no noticeable weight loss, no jaundice, just pain in his abdomen that has become more consistent and spread to be more general abdominal pain but started in RUQ, good energy for the most part, still working full time and overtime and carrying on daily activities. I can't express how much of a shock this is.

Thank you in advance for your help and thank you for all of the work and research you do for this disease. It is clear that it has helped many people.

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Sat Oct 13, 2018 09:38 AM

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Uncertain Diagnosis
Letters from Hong Kong

MrT,
          Hong Kong presents a problem, because facilities are limited.  However, if insurance and financing are not limitations, you can go anywhere.
          You need not make any mention of past tests or diagnoses.  At each facility you can begin anew and cite only the symptoms.  That approach will result in fully independent diagnoses.  For the most urgent care, you can enter the facility via an Emergency Room visit.  State that you’ve relocated your residence; the symptoms became insufferable, and that you are able to pay costs.
          If MD Anderson has no record on you, start there.  Closer to your neighborhood, a Japanese facility may be suitable.  And, if you are racially Asian, an S-1 chemotherapy regimen may be especially effective.
         PhilipJax

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Sat Oct 13, 2018 10:22 AM

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Stage 4 Induction Therapy: FFX or NabP+Gem
Canadian Limitations

Dear Daves,
          FOLFIRINOX (modified FFX may be better) is usually the chosen induction (starting) therapy, because it is likely more effective than Nab-P + Gem, slightly, and the patient is stronger at the beginning.  Strike early and strike hard.
          As you’ve noted, there are good outcomes for some variants of Nab-P + Gem, those adding Cisplatin and other agents.
          However, they are not regularly used by typical physicians for induction therapy because of uncertainty.  Most of the emerging regimens have completed only early phase trials; they have not completed the Phase 3 trials required by US FDA for use in clinical practice.
          And, the group sizes are usually smaller in Phases 1 and 2, making the performance less able to be extrapolated reliably to larger patient populations.
          Of course, I would certainly consider using the Nab-P + Gem variants for induction, and most of the added agents are approved for pancreatic adenocarcinoma – it is the regimens that are not FDA approved.
          It is possible to find inventive oncologists willing to use these emerging regimens, but they will be nearly impossible to find within Canada’s system of socialized medicine.
          In the US you might find a few creative surgical oncologists who will address the few liver metastases (but not likely in Canada), so you should consider some of the Canadian work-arounds that I have posted recently.
          Also, I assume that you have also studied the Decision Guide found at my website.  It is updated almost weekly.  So download the latest edition.
https://pancreatic.altervista.org/
         PhilipJax

RE: nanoknife IRE for pancreatic cancer

by Baloo on Sat Oct 13, 2018 05:09 PM

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Dear Davesgirl70,

 Which province are you in? From what I understand, the protocols vary.  You may have to go to another province, or even out of the country, to get the drug combo you prefer.

RE: nanoknife IRE for pancreatic cancer

by DavesGirl70 on Sat Oct 13, 2018 05:15 PM

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On Oct 13, 2018 5:09 PM Baloo wrote:

Dear Davesgirl70,

 Which province are you in? From what I understand, the protocols vary.  You may have to go to another province, or even out of the country, to get the drug combo you prefer.

Baloo, we are in Ontario, proximal to Toronto/Princess Margaret where I have heard good things about oncologists being willing to work with patients. Unfortunately Cancer Care Ontario is apparently quite strict about which centre you go to based on address, so we have been defaulted to Grand River in Kitchener. Weare  are also very close to Juravinski in Hamilton. But I will fight tooth and nail to make sure he gets the best chance/treatment for more time together. We also both have excellent benefits through work that will help with treatment/drug coverage. 

RE: nanoknife IRE for pancreatic cancer

by DavesGirl70 on Sat Oct 13, 2018 05:19 PM

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On Oct 13, 2018 10:22 AM PhilipJax wrote:

Stage 4 Induction Therapy: FFX or NabP+Gem
Canadian Limitations

Dear Daves,
          FOLFIRINOX (modified FFX may be better) is usually the chosen induction (starting) therapy, because it is likely more effective than Nab-P + Gem, slightly, and the patient is stronger at the beginning.  Strike early and strike hard.
          As you’ve noted, there are good outcomes for some variants of Nab-P + Gem, those adding Cisplatin and other agents.
          However, they are not regularly used by typical physicians for induction therapy because of uncertainty.  Most of the emerging regimens have completed only early phase trials; they have not completed the Phase 3 trials required by US FDA for use in clinical practice.
          And, the group sizes are usually smaller in Phases 1 and 2, making the performance less able to be extrapolated reliably to larger patient populations.
          Of course, I would certainly consider using the Nab-P + Gem variants for induction, and most of the added agents are approved for pancreatic adenocarcinoma – it is the regimens that are not FDA approved.
          It is possible to find inventive oncologists willing to use these emerging regimens, but they will be nearly impossible to find within Canada’s system of socialized medicine.
          In the US you might find a few creative surgical oncologists who will address the few liver metastases (but not likely in Canada), so you should consider some of the Canadian work-arounds that I have posted recently.
          Also, I assume that you have also studied the Decision Guide found at my website.  It is updated almost weekly.  So download the latest edition.
https://pancreatic.altervista.org/ "" target="_blank" rel="nofollow">https://pancreatic.altervista.org/ " target="_blank" rel="nofollow">https://pancreatic.altervista.org/
         PhilipJax

Thank you so much PhilipJax, I have seen the Canadian work arounds and have it in my back pocket as well. I'm hoping that the oncologist here is willing to work with us and we also have access to great health benefits through our jobs. So we hope to keep those jobs and seek treatmennt at the same time. But we are not far from Buffalo, NY either. I continue to read through your website and info, I've also been gathering supplements particularly to prevent muscle wasting as that hasnt really begun to happen yet. I do know how crucial it is to move quickly. 

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Sun Oct 14, 2018 02:58 AM

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The Meaning of Multiple Irons In The Fire
Canadian Limitations

Dear Daves,
          Your reference to “back pocket” means that you have not yet learned the meaning of “Multiple Irons in the Fire.”  The US residency must be started NOW.  And, Obamacare open enrollment begins in Novembers, so applications must be started in a few days.  More details here:
https://www.pancreatic.altervista.org/#ushealth
          Both Residency and Obamacare must be in place long before needed. 
          This is also called contingency planning, which requires that many preparations must be made even if eventually they are not used.
          If you wish to avoid wasting, skip the supplements and study the reports found here:
https://www.pancreatic.altervista.org/#anorexia
         PhilipJax

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Mon Oct 15, 2018 05:50 PM

Quote | Reply

The Meaning of Multiple Irons In The Fire
Canadian Limitations

Dear Daves,
          Your reference to “back pocket” means that you have not yet learned the meaning of “Multiple Irons in the Fire.”  The US residency must be started NOW.  And, Obamacare open enrollment begins in Novembers, so applications must be started in a few days.  More details here:
https://www.pancreatic.altervista.org/#ushealth
          Both Residency and Obamacare must be in place long before needed. 
          This is also called contingency planning, which requires that many preparations must be made even if eventually they are not used.
          If you wish to avoid wasting, skip the supplements and study the reports found here:
https://www.pancreatic.altervista.org/#anorexia
         PhilipJax

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