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Thread: Stage 4 - Diagnosed about 1 month ago

  1. #1
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    Stage 4 - Diagnosed about 1 month ago

    Hi! I just found this forum. Looking to reach out and hear from other people in similar situations and how their treatments and lives have progressed.

    Earlier this year I started having mid-abdominal pain that occasionally radiated to my middle back. I attributed it to my years of dealing with GERD, occasional gastritis, and small hiatal hernias. I've had similar pain in years past.

    I'm in my early 40s, married, and we have two teenaged kids.

    In mid-April, the pain grew very bad. Eventually I got a CT scan that showed a 3.5 cm mass in my pancreas, swollen adjacent lymph nodes, and many lesions on my liver. CA 19-9 was 489000 U/mL. Needle biopsy of the liver lesions confirmed adenocarcinoma.

    I've seen three different oncologists. Each of them have given the same diagnosis and advised the same treatment plan.

    Since then I've had two infusions of 4F (FOLFIRINOX). Chemo is a fantastic blend of experiences - like having a hangover with food poisoning for several days while the effect of gravity is about double.

    No one has given me any type of prognosis. I've asked. Googling it is pretty soul-crushing. Best statistic I could find is that people under 50 have a 16% 5-year survival rate.

    The current plan is to continue with 4F and see how it goes.

    I've had genetic and also genomic (molecular profiling) tests done, although I won't get the results for a few more weeks.

    If anyone has advice on any type of new or alternate treatment, or perhaps any type of other test that could help, please let me know. I've been reading what I can about my cancer. It's pretty bleak, but I know a lot of research and studies are ongoing.

  2. #2
    Super Moderator Top User ddessert's Avatar
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    FOLFIRINOX is a great first choice while you wait for the genetic test results. That may give you the best information on the right treatment for you.

    The lesions on your liver are probably your worst news. It’s not usually the main tumor that kills you, but rather the metastases. On the plus side is your young age.

    MD Anderson hosts a lot of pancreatic cancer clinical trials and is near to top-rated in the world. PanCan.org can help you find clinical trials in your area, but won’t help you evaluate them.

    The NCCN Treatment Guidelines recommend genetic testing (which you’re doing) and clinical trials as the first treatment option. Many clinical trials will use the standard treatment plus an investigational drug.

    We keep our discussions here on the scientifically-backed treatment options here and leave the alternative treatments to other places. Anecdotal “evidence” is a poor way to judge effectiveness because you’ll only hear from the survivors and that skews the real results. Clinical trials follow everyone who gets the treatment regardless of outcome so we get more realistic results.
    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 - IMRT+Xeloda
    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 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  3. #3
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    hi Lego dude,

    I am very sorry to hear your story, you are very young and have two teenagers, you have to fight hard, make sure you research and follow the right path. My sister, 73 stage 3, after three round of chemo and one round of radiation, it did not response and rose up to stage 4. Please check with John Hopkins in Maryland, they seem to be the really expert in pancreatic stage 4 treatment, they have a lot of research and clinical trial, and they are specialized in Immunotherapy and Pancreatic Vacine.
    Best of Luck !

  4. #4
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    Thanks everyone for your responses. I apologize for the late reply here. Getting through the chemo treatments has been pretty rough, and I find little time to do normal things where I can think clearly.

    I have now done genomic (molecular profiling) and also genetic testing. The genomic test revealed three mutations. I'm still waiting on the genetic test results.

    I've looked through countless trials but have not found one that fits yet.

    Some good news, though. My CA19-9 level has dropped to 1/5 of where it started pre-treatment. I guess that's good?! I have not had another CT scan yet, although that should be soon.

  5. #5
    Super Moderator Top User ddessert's Avatar
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    That dropping CA19-9 is a good sign, but the CT scan will be the real confirmation. Totally understand the lack of energy or desire for anything after chemo. The first round is often the worst as you figure out how best to deal with it.
    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 - IMRT+Xeloda
    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 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  6. #6
    I am so very sorry for your diagnosis. I am 37..you are not much older than me. My father is currently battling. He just turned 61.

    The good news is his was VERY advanced when they found it. Stage 4, but his lungs were full of masses. The doctors didn't think he would make it 3 months. He is still here, a year later!

    I hope and pray you are in the 16%.

  7. #7
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    Quote Originally Posted by schnauzermama82 View Post
    I hope and pray you are in the 16%.
    Thank you. I'm sorry about your father, but his story gives me hope. I've not been given any prognosis, so I have no idea what to expect. Just taking this thing day by day...
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  8. #8
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    Dear legodude,

    Do not feel discouraged by your illness. Thatís the only life we get and it comes with shortcomings. Every severe illness is tough. What if you had kidney failure or heart failure? Would you be better off? Choose wisely your options and stay positive. Do not listen to those docs that put you down

  9. #9
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    Quote Originally Posted by simonedriva View Post
    Dear legodude,

    Do not feel discouraged by your illness. That’s the only life we get and it comes with shortcomings. Every severe illness is tough. What if you had kidney failure or heart failure? Would you be better off? Choose wisely your options and stay positive. Do not listen to those docs that put you down
    Thank you. I try to stay positive. It's not easy but I try.
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  10. #10
    Moderator Senior User BrigitteM's Avatar
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    Sep 2016
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    Dear Legodude
    Folfirinox is a very aggressive regimen but also one that has shown the best results; although some pancreatic tumors don't respond to it. Make sure your oncologist knows about every of your reactions to the chemotherapy. Feeling overwhelmed, tired, and sick is normal and very understandable. We can also offer tips to deal with certain side effects. Don't hesitate to ask. You are not alone

    Do you know the name of your mutations? This information might help to point to additional treatment.

    Warmly,
    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 small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

 

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