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Thread: Dad 5 months in stage 4 adenocarcinoma

  1. #1
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    Dad 5 months in stage 4 adenocarcinoma

    Hello everyone. My dad was diagnosed with pancreatic cancer oct 9th at the age of 60. He has no other health conditions. He started treatment of Folfirinox in the middle of November. By Jan 10th it showed the tumor had deceased from over 3cm to right at 1 cm. The spots on his liver also decreased significantly. Two more months pass and all of his blood work is coming back in the normal range, his CA19-9 is at 30, and his weight has stabalized. Since he was doing so well we were expecting another decrease in tumor size and overall improvements. Unfortunately the scans showed no change from Jan to March. This was a hard blow. We kept wanting to fight this thing and keep kicking this Cancer's butt. Now he is going to be put on a maintenance chemo. We were so hoping to be a statistical anomaly, but it is not to be so. It's been a hard week. Any similar experiences out there?
    I was hoping the dr.s may take more out of the box approaches with my dad. But taking those risks may end up shortening his life rather than extending it. He is such a fighter though, and is fit for his age, and has a strong desire to live. So hard..😥. In the meantime he is doing really well. Going to get a bucket list carved out and live like crazy while he is doing well. Thanks for your input.

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Congratulations, he sounds like he’s making great progress!

    I’ll state that the scans that show no further reductions are still good news. You need to understand that while CT scans are our current gold standard for measuring progress, they are not perfect. I would say it’s probably more accurate to say that CT scans measure the maximum possible size of the tumors, not necessarily their actual size.

    CT scans cannot see the difference between scar tissue, dead tumors,or live tumors. So it is possible that the live tumor continued to shrink but it does not show up on scans. We think that the best way to measure the actual tumor size is with a combination CT/PET scan. The PET scan can measure the part of the tumor that is actively growing, or what we’d consider to be the live tumor.

    So it is possible that the tumor has continued to shrink, but is surrounded by a ‘shell’ of dead scar tissue that will slowly be reabsorbed by the body. This is what happened to me and many others.

    A CT/PET scan is pretty expensive and an insurance company will usually only spring for it if it makes a difference in treatment decisions. So for instance, if he was about to head into surgery and they wanted to look for the live tumor spots and metastatic sites before removing them, they could do that imaging.

    With reductions and stability like his, he may even become a candidate for surgery. It is not often offered the stage 4 patients, but for those who are otherwise healthy, younger, demonstrate a great chemo response and no new metastases, if it being considered at the top hospitals like MD Anderson and Johns Hopkins.

    Note that this is not widely considered and it can be hard to find a surgeon to undertake it. There is not strong evidence that it results in better outcomes, but it is the only reliable chance at a cure, if he’s interested.
    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
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    Hi Melanie,

    just like what David Said , the CT scan inconvenient is that it shows the tumor even if it was transformed into scar tissue.
    this happened also to my dad we were always seeing the spots on his lungs and on his liver, but when we went into the PET/CT scan we realised that most of them are scar tissue and the ones left are having necrosis.
    and congratulations for the progress you are making, good luck !
    24-06-2017 : Father Diagnosed with Stage 4 adenocarcinoma tumor on the tail of pancreas , mets to liver and lungs.
    06-07-2017 : PET/CT FDG of 2.4 mets in lungs , 4.6 x 3 cm mass on pancreas tail SUV max = 4.2 , innumerable mets on liver SUV max = 6.3
    02-07-2017 : started with folfirinox.
    21-09-2017 : CT scan showed stability of the tumor, significant shrinkage of mets on liver, some mets disappeared.
    03-11-2017 : CT scan showed stability of the tumor, dicrease of the size of mets on liver.
    05-12-2017 : Ca 19-9 = 185 U/ml
    19-12-2017 : Ca 19-9 = 186 U/ml
    04-01-2018 : PET/CT no FDG on mets in lungs ( Scar tissue) , 3.3 cm Calcified tumor showing Faint FDG SUV max = 2.2 , Necrotic mets on liver SUV max = 3.7.
    26-04-2018 : Onco decided to stop chemo after 18 cycles of full Ffx,chemo doesnt work on none active cells. Total = 18 full cycles of Folfirinox.
    19-06-2018 : PET scan ==> NED, cancer's ass beated!
    03-09-2018 : MRI Scan ==> still NED.

  4. #4
    Moderator Senior User BrigitteM's Avatar
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    Hi Melanie,
    I am very sorry for you, your father and your family. He is still young and it must have been quite of a shock for you all. It is a good sign that your father's tumor and mets are responding to Folfirinox. I was wondering what "maintenance" chemotherapy meant? Has clinical trial been discussed with your father? I also wonder whether it would be possible to biopsy the tumor or the mets to get a molecular profile.

    As David say, there are some hospitals, with multi-disciplinary teams and high-level of expertise in pancreatic surgeries that will accept to perform the surgery. Usually, they are academic hospitals and have clinical trials. There are a few patients with stage 4 who were able to have surgery when the tumor and mets are stable, and some others who live longer than expected with clinical trials. Some are on this forum and may give you some feedback.

    Another important factor is what does your father want? Will he want to get a second opinion?

    Have you contacted PANCAN.org? They can connect you with patients who have a similar diagnosis as your father. They also can help you finding clinical trials. I found talking with them is very uplifting.

    Wishing you the best,
    Brigitte
    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several tiny lung nodules - NED
    Feb 2018 Stable lung nodules - NED
    May 2018. Lung nodules are growing; possibly mets, but still considered NED
    Aug 2018 One lung nodule has reached 1.7 cm. Biopsy confirms it is pancreatic metastasis.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)

  5. #5
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    Hi. Don't know how much this may help. I was diagnosed in August 2013 age 62. Lucky enough to have the Whipple in Sept 2013 with 6 months of chemo after. Had 2+ good years with no sign of cancer. April of 2016 tumor came back in same spot and about the same size (2.6) Had 9 rounds of Folfirinox. During that time tumor decreased only slightly to 1.7. Was put on maintenance (fluorouracil) with tumor staying stable and about the same size until May of 2017 when it started to slightly increase. Had 5 weeks of radiation ending in Sept 2017 with tumor even growing slightly during treatment. Have been back on maintenance every two weeks since with only a 1 month break after radiation. So for last two years and all the chemo and radiation my tumor has never decreased. My CEA numbers are rising now so the fight is far from over, yet I can do everything I have ever done with very few problems while pushing 5 years with this thing. Your Dad staying fit and fighting hard is the way to go. My hat's off to him and his attitude.

  6. #6
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    Thank you all very much for your responses! This is such useful information!
    Sometimes when i may post something here I may not have all the specific information, I'm getting it second hand from my parents and I often have to look at the paperwork myself to get all the details.
    I would love to know what a PET scan would show. At his stage of the game, you think that it would be useful information to the decision making of my dad's care. My question is, if he were to get a PET scan and it showed that the FOLFIRINOX was still working, wouldn't it be advantageous to continue with that treatment? He was on a 75% rate. He is handling it so well, he didn't have severe reactions, kept a lot of his hair, looked pretty good.. he was exhausted all the time, though. The oncologist acted like she didn't want him to be on it any longer because it's hard on his body. I was also wondering about radiation with stage 4. They don't want to do it. Why is that, it's never been explained to me? I'm assuming it's the same reason they do not want to do surgery. If they fix one spot with cancer, another area will likely grow cancer, so you haven't solved anything. Is that right? I know the medical fields perspective is life extension only for stage 4, and not curing, because they believe it's impossible to cure. Perhaps it's true, but you hear stories of people being cured at stage 4... Rare as it is. As a patient/family member it's hard to know how hard to push the medical field. I want the most time with my dad, but I would want for him to beat this thing more! Do you know what I mean?
    His maintenance chemo is part of the FOLFIRINOX.. they removed some of the combination, which I cannot tell you because I haven't looked at his script. He is getting a 46 hour drip every 2 weeks.
    Thanks everyone. God bless.

  7. #7
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    Have you checked out the thread "Tumor, Mets, and Surgery?"

    https://www.cancerforums.net/threads/53777-Tumor-Mets-and-Surgery

    I do not know about radiation, but I have read more about resection/ablation/nanoknife/IRE of the liver mets.

    If you google terms like pancreatic stage iv surgery and limit the results to the past couple years you will see some information on that.
    For example: https://www.ncbi.nlm.nih.gov/pubmed/27423449
    and https://www.ncbi.nlm.nih.gov/pubmed/28516291

    It sounds like he has some things going for him with his CA 19-9 normalizing and a chemo response. Surgery may not be an option, but I'd get all the answers before just deciding to go on "maintenance" forever and potentially missing an opportunity. Or maybe he just needs to maintain for a period of time before visiting the surgery option. Maybe a PET scan would give the answers. Just keep pushing!
    August 2017 mom, 62, pancan with distant lymph nodes and small nodes in lungs
    Sept 2017 3 rounds of FOLFIRINOX
    Oct 2017 lung nodes gone, but then minimal tumor growth
    Oct 2017 Gem/Nab-Pac
    Caris profile BRIP1 mutation
    Persuaded oncologist to add Cisplatin based on mutation and Honorhealth trials
    Cisplatin added to 2nd cycle of chemo and after
    12/4/17 lymph node shrinkage around tumor, slight tumor shrinkage, no other spread
    Vitamin D (paracalcitol) added per Honorhealth's experience/trials
    2/6/18 lymph nodes and tumor shrink. Pancreatic duct from 6mm-3mm.
    2/19/18 pathogenic germline mutation BRIP1 also BARD1
    Continuing Gem/Nab/Cisplatin w/ Paracalcitol
    April 2018 small growth of tumor and lymph nodes Outsmarted chemo.
    May 2018 Kidney blockage stent, not eating, pain, threw a wrench in things
    June 2018 begin Olaparib due to germline DNA repair mutations.
    Everything falls apart, mom passes just one year past diagnosis. 63 years old. WTF.

  8. #8
    Super Moderator Top User ddessert's Avatar
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    I would not judge how well he’s handling the chemo by how well he looks. Cancer patients can put on a good show of normality and be dying inside. Perhaps the oncologist is keying off of their private conversations? Perhaps he does not want to be exhausted all the time? Gaining a few extra months is of little use if you can’t live those extra months.

    Radiation on stage 4 patients is only done for palliative, not curative, reasons. The radiation is a “spot” treatment, trying to leave all other areas untouched. Meanwhile, every other cancer tumor is left to grow without any treatment. Plus the recovery period afterwards.

    As much as you want to spend more time with him, please let him decide what to do, how much treatment to endure, how long to fight. You can give him some options you’ve learned about, but don’t pressure him into treatments he does not want. Just be there to love and support him.
    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

 

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