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Thread: PC/stage IV Two year anniversary - time to change treatment strategy?

  1. #1
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    PC/stage IV Two year anniversary - time to change treatment strategy?

    Today it is 2 years since I was diagnosed with PC (ACC) with mets to the liver. Two years ago I did not think I would be here today writing this post, but all things considered I have been fortunate. I had 9 cycles of folfiriox, then surgery removing 3 inches of the pancreas tail. Since then I have received no treatment at all, just 3-monthly CT scans monitoring the mets in my liver. Still after 18 months without any treatment they are stabile, and no sigs of other mets. 4 of originally at least 9 are still visible at the CT scan, larges measuring 12 mm. I am discussing with my oncologist if I would be eligible for a more aggressive treatment trying to remove the mets, but he still don't think it is worth the risk. i am very well aware of the standard treatment protocol for stage IV (no surgery), but it seems like my cancer does not follow the typically pattern and therefor should be treated accordingly. The reason for no surgery is basically the risk of overwhelming chance of recurrence in the shorter and midrange perspective, which seems to not be the situation in my case. On the other side since the cancer is currently not growing, no poitin taking unnecessary risks including waking sleeping cancer. Would be very interested in any perspectives or experience from you all regarding changing treatment strategy. Best wishes for you all<3
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - November 18 CT show stabile disease - no new or enlarged mets

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Dessmo, I’m very pleased that your actions of taking charge of your situation and advocating more aggressive treatment at stage 4 has worked well for you! It demonstrates that what works best for most people is not always the best for you.

    When we accept the median treatment, we can expect the median outcome.
    A few things in your story stick out to me. I’ll try to rate what I say here with how much [evidence] there is behind the statements, but I think there’s enough here to ask an expert.

    1. You appear to have has a great response to FOLFIRINOX. Like my response to Gem/Cis, you are able to have a long, durable response requiring no more treatment.

    2. While you don’t have a BRCA1 or BRCA2 mutation, you do have one in MLL2 (aka KMTD2). This mutation has been implicated in the same type of genomic instability as BRCA1/2 [moderate-strong].

    3. Platinums and PARP inhibitors (PARPi) are known to work well against BRCA1/2 mutations [strong]. The OXaliplatin in FOLFIRINOX is one of the platinum chemotherapies - which you had and seemed to work well for you.

    Putting those points together for your case, perhaps the MLL2 mutation is what is/was susceptible (the Achilles heel) in your tumors [speculation]?

    4. PARPi are being studied (at UPenn) as maintenance treatment is PanCan adenocarcinoma patients who are still responding to FOLFIRINOX [fact]. This trial emerged as a less toxic replacement for platinums in patients with BRCA1/2 mutations. It is not just limited to BRCA1/2 but includes germline PALB2 mutations. I’d expect that in the near future, we will be seeing PARPi applied to some of these other HR pathway mutated genes [speculation].

    So all this to say that perhaps a PARPi maintenance treatment is worth a look at?

    If you want to explore that idea further, I would suggest you get your doctors to consult with Dr. Kim Reiss Binder of UPenn, who is running these trials. While you would not qualify for this particular trial, I think it’s worth exploring the options with Dr. Reiss Binder (point of interest: she speaks Dutch). Explain your outstanding, durable response to FOLFIRINOX, your mutation list, and young age.

    I’ve spoken with Dr. Reiss Binder and know a few others who have, and she is totally committed to her patients. And those she can help tangentially. She seems ready to bend over backwards to help out.

    PARPi have been approved for other cancers. I’m hoping that you might just be in the leading edge of new treatment options for these drugs. We don’t really have time to wait for the research to become fully developed, amiright?
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  3. #3
    Super Moderator Top User ddessert's Avatar
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    Separate answer: about surgical resection of liver mets

    I think I understand their concerns about surgery unleashing hidden metastases elsewhere. As I’d posted previously, I was invited to a metastases Research Society Meeting in June? This year where I learned a great deal about metastases.

    First takeaway was that our tumors are shedding off millions of cells every day. Most are not viable and fewer take hold. But their thinking is that there are many just lying around for the right conditions.

    Second takeaway is their solid belief in the “seed and soil” hypothesis. The idea that these tumor cells (seeds) need to land in the right kind of soil (organs) in order to take root and grow. If they’re incompatible, then no metastases.

    Third takeaway is my own analogy of insects and trees. Insects seem to prefer, or are able to take hold, in stressed trees. If the trees are healthy, then they’re able to resist insect infestation. In a similar manner, I’m considering that our organs under stress may allow tumor cells to progress as well. In this line of thinking, a surgical intervention may further weaken your liver and allow other dormant tumor cells to take hold.

    You can come away with your own idea of what this means. To some, it means don’t do surgery. For others, it may mean being as healthy as possible before the surgery so that recovery is swift. But at least it points to some sort of plan.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  4. #4
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    Thank you very much for your knowledge and advice David. I frequent quite a lot of forum and Facebook groups, but I must say that you are one of the more knowledgeable.
    I very much agree with your statement
    When we accept the median treatment, we can expect the median outcome
    Here in Norway personalized treatment strategy is not very well developed, most hospitals offer standard treatment protocol. I think and hope we will see a change to that in the near future.

    1. You appear to have has a great response to FOLFIRINOX. Like my response to Gem/Cis, you are able to have a long, durable response requiring no more treatment.

    2. While you donít have a BRCA1 or BRCA2 mutation, you do have one in MLL2 (aka KMTD2). This mutation has been implicated in the same type of genomic instability as BRCA1/2 [moderate-strong].
    I had very god results with folfirinox, even though I only had 80% it shrinked both tumor and mets 50 %+. KI67 based on the biopsy from the metastases before chemo was between 30-40%, the analyses of the tumor after 9 cycles with folfirinox showed KI67 was less than 1 %. I don't understand all when it comes to KI67, but I think this is a clear indication of the chemo being very effective.

    I find what you write about PARPi very interesting, and will discuss with my oncologist. I will also try to contact Dr Binder to get his perspective based on ACC and my specific mutations. Actually the molecular profiling indicates that there might be some inhibitors linked to some of the other mutations.

    ...tumor profile shows a CTNNB1 mutation that prevents beta-catenin degradation leading to excessive WNT pathway activation and possible sensitivity to WNT inhibitors. WNT pathway activation is characteristic of pancreatic acinar cell carcinoma. MLL2 and SMAD4 mutations are not associated with known targeted therapies. Thus, this testing suggests that clinical trials with WNT or mTOR inhibitors could be considered.
    My oncologist perspective is to try some of these inhibitors after a new round with Folfirinox if there are indications that the cancer is growing.

    I like and understand your analogy of tree and insects. I strive to be healthy and strong through diet, exercise and a healthy lifestyle. Whether I should aim for a more aggressive liver directed treatment or just wait and see is a complicated question, and I guess no one actually know what will be best for me. My oncologist won't take unnecessary risks, so as long as they can control the disease with systemic treatment he will not recommend any liver directed treatment. It all comes dow to a risk versus possible gain assessment, which is very complicated, especially since there are limited knowledge and experience in treating ACC.

    Thank you again David, and best wishes to you and yours in the holiday we are about to enter.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - November 18 CT show stabile disease - no new or enlarged mets

  5. #5
    Super Moderator Top User ddessert's Avatar
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    There is a lot to unpack on that surgery decision. And the decision to be aggressive or conservative.

    A surgeon acquaintance of mine (a NanoKnife advocate) seems to think that patients wait until it is too late to try the not-yet-approved treatments, such as in clinical trials. By that time, he feels it is often too late for them to benefit. From the insect/tree analogy, it might be like waiting until the tree is diseased before trying to save it. Or, an ounce/gram of prevention is worth a pound/kilogram of cure.

    And I'm sure you also realize that chemotherapy and these other systemic treatments are not intended to cure anyone. So how we think about the end-game can be a major factor in our decisions.

    It is a very complicated and personal decision process. The engineer in me wants to create some sort of weighted decision tree to "game play" the possible outcomes and determine the optimal treatment decision path, depending on the desired outcome. Because humans just suck at assessing risk.

    Enjoy your holidays as well. During my extended non-treatment period, my family went on a 48-passenger National Geographic Pacific cruise of Costa Rica and Panama culminating in a New Year's eve passage through the Panama Canal. That was expected to be the capstone holiday, but I've ended up living a much longer time instead. Hopefully you will be as fortunate!
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  6. #6
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    Thanks again David, I will try your decision three listing the different options and bring that for discussion with my medical team.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - November 18 CT show stabile disease - no new or enlarged mets

  7. #7
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    Dessmo - you are so fortunate! Might be worthwhile to look at a trial at Loma Linda for removing liver mets via proton therapy. Don't have the url but you can look it up.
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose

 

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