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Thread: Remission?

  1. #1
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    Remission?

    Hello, first time posting here.

    My mom has pancreatic cancer- adenocarcinoma with acinar variant. She was diagnosed in July 2014 at the age of 63 and had a whipple (sort of, they didn't know it was pancreatic when they went in, but the procedure was basically a whipple with a kidney removal as the tumor had attached itself). She had mets in her liver as well. It was first misdiagnosed as neuroendocrine, but after 6 months of treating that and no result, the cancer was retested and discovered to be adenocarcinoma.

    She was started on Gem and Platinum and no results after 3 months of that. We finally saw a specialist at Wiel Cornell (Dr. Ocean) and she started my mom on FOLFIRINOX and we've had INCREDIBLE results. I don't have exact numbers of anything anymore because I'm out of the loop since I moved out, but her largest liver met was I think 13cm and it's barely anything now. She started the Folfirinox in Oct 2015 and did over a year of it, only at about 70% of the standard dosage. They took out the irinotecan eventually due to increasing neuropathy.

    I'm just wondering what signs of remission might look like. Do we have any hope of getting there? Right now her local oncologist and Dr. Ocean just want her to keep doing the treatments indefinitely, every 2 weeks until the cancer grows again. Assuming it will. Is there no hope for full recovery? She does have pretty good quality of life, but she loses basically 2 weeks (3 days of the infusion and then 3ish days of recovery) of the month to chemo and it gets daunting for us all that this could be life for the next 5-10 years. (God willing). The drs are taking a better safe than sorry approach, which I get, but I also am just unsure why. They keep saying it's not curable, which I know it's not usually, but it's also not usually treatable either, and she's done incredibly well so far.

    I've tasked my mom with asking some more questions the next time she goes into Dr. Ocean's (local oncologist does the bulk of treatment, but he didn't want to do Folfirinox and my mom almost died because of his hesitation quite frankly), but I wanted to hear some other's experience with long term treatment.

  2. #2
    I'm glad you asked that question. I read on here the other day someone's doctor said "it ALWAYS comes back." Is that true? I have heard of people, though pan can .com , who had PC and after treatment it never came back (after more then a decade, still no trace).
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.

  3. #3
    Super Moderator Top User ddessert's Avatar
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    So I tracked down the Let’sWin PC 20-year stage 4 survivor recently, and her video stated she had a BRCA1 and BRCA2 mutation (really rare). They didn’t say what her treatment was, but a platinum chemo could have resulted a complete resolution of her tumor.

    How that would work: if both those mutations were present throughout the entire tumor, Cisplatin would be effective against every single cell in that tumor. Having both a BRCA1 and BRCA2 mutation means the the tumor would be much less likely to “evolve” a way around that treatment.

    It’s a very rare set of circumstances and might explain why we see so few results like hers.

    It’s impossible to say that it’s impossible, but it sure is not common, nor likely.
    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
    You mean to say it's not common that a treatment would eradicate PC permanently?
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.

  5. #5
    Super Moderator Top User ddessert's Avatar
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    Not only not common, but rare, in my opinion.
    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
    With or without surgery? By the way, the person I was thinking of is kind of a legend in the PC world. Around 30 years he has survived. Only had chemo (no surgery).
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.

  7. #7
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    I know Dr. Ocean tested the tumor for genetic markers, that's how we found it had the acinar variant, and it does seem to be a weird hybrid which is why initial results pointed to Neuroendocrine.

    I don't think though she has been tested for BRCA. We have no known family history of breast or ovarian cancer though, so I think it's unlikely she has that, which is probably why they maybe haven't tested for it.

    I was just curious about why some people continue ongoing chemo and some stop. Even if recurrence is guranteed, can we ever reach a point of NED and stopping chemo? I poked around on here before posting and saw that some people do stop chemo. My mom currently does MRIs with contrast every 3 months. Would a PET scan give more info?

    No one wants to risk my mom's life, but I just want to make sure we ask all the right questions, take the right tests, and at least be informed as possible.

  8. #8
    Super Moderator Top User ddessert's Avatar
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    I stopped chemo for a period of 12 months with no tumor growth, no symptoms, and great quality of life. That was the best part of the entire ordeal. There was anxiety before every scan, wondering about tumor growth and whether we were waiting too long. However it all worked out in the end.

    At the end of those 12 months, I had surgery which showed that there was still a live tumor there, much smaller than what the CT scans showed, waiting to come back some day. Who knows how long I could have gone without treatment? It could have been years!

    My oncologist said that chemo works on actively growing tumor cells. If my tumor is not active, then the chemo would have no effect against the tumor, just the active normal cells in my body, such as intestinal lining, skin, mouth cells, blood cells, etc. she said I would have all the side effects and no benefit. It was better if we waited until the tumor started growing again. Of course at this time, I was considered unresectable.

    Some people stop chemo because they’re tired of the side effects. They wonder if they are only gaining days compromised by chemotherapy induced nausea, weakness, diarrhea, etc. It’s been observed that patients that enter hospice earlier seem to last longer than those that continue treatments until their bodies give out. BobInBonita struggled with this choice and sometimes wished for a quicker end.

    In the past, for those that no longer wanted to do chemotherapy due to the side effects, but still wanted to do something, I recommended checking out a targeted therapy or immunotherapy clinical trial. They promised fewer side effects and still offer some chance at tumor reduction or even cure while promoting the science. But, as with all previous breakthroughs, the “cure” aspect now seems to have been wishful, and the targeted therapies seem to have their own side effects. But they still advanced the understanding for everyone.

    [soapbox]
    We should ask PanCan.org to fund a clinical trial for patients that want fewer/no side effects, emphasizing quality of life and a chance at longevity as well. I feel that they do very little research into helping current patients. This could be a low-dose and/or more time between treatments trial. As I’ve said before, we are given the maximum tolerable dose (MTD), but very few studies look at the minimum effective dose. More chemotherapy is not always better.
    [/soapbox]
    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

  9. #9
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    Very interesting thread, I have ACC, 9 cycles of 80FFX, surgery to remove the tumor but stil metastasis in the liver. So fare my doctors have not been willing to do specific liver treatment. Did my last chemo in May 2017, and just CT every three months since. So far no sign of the mets growing, largest is 14mm. My doctor says the same as David, chemo only works on active cancer cells. So th y don’t recommend starting with FFX before the cancer shows sign of growing. I have done genetic profiling via PANCAN, no BRCA mutations. Great quality of life w/o chemo every 14 days, but I am a bit sceptic to continue on without any treatment. New scan this week, and meet with my oncologist on Friday. Hope for good results, an a fruitful discussion about treatment options. Best wishes for your all.
    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)
    August 17 - CT and MR show no new mets, existing reduced compared with pictures from June 17
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    October 17 - CT show stabile disease - no new or enlarged mets
    November 17 - CT show stabile disease - no new or enlarged mets
    January 18 - CT show stabile disease - no new or enlarged mets
    April 18 - CT show stabile disease - no new or enlarged mets

 

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