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Thread: Father Diagnosed

  1. #1

    Father Diagnosed

    Hello,

    My father just turned 60 and has been diagnosed with stage IV adenocarcinoma pancreatic cancer. It has spread to his lungs and they are covered in masses.

    He was diagnosed in June. At first they only saw the lung tumors, but then upon further testing, found that it originated in the pancreas.

    He has been having weekly chemo, but had to take a break after only a few treatments due to cellulitis. My family (they all live in California while I am in Texas) is trying to get him into a clinical trial but he hasn't qualified yet. He was excluded from Johns Hopkins due to a sulfa-drug allergy. They are trying MD Anderson now, but the response has been slow.

    I am going to see him at the end of this month. I guess I just want to know what to expect. I know no one can tell me for sure, but I guess I am just afraid of the unknown. I arm myself with knowledge and that helps me to feel less anxious.

    Please help me if you can.

    Thank you,

    Amy

  2. #2
    Moderator Senior User BrigitteM's Avatar
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    345
    Amy,
    I am very sorry to learn about your father's diagnosis. David and I are convinced that a well-informed patient has more chance to make the best choices and to improve health outcomes. I encourage learning as much as possible about the condition and the treatments. And as you say, it helps with keeping anxiety at bay.

    Do you know whether your father's doctors did a molecular profiling of the biopsies ? For some patients, the molecular profiling may show a particular mutation for which more effective treatment exists.

    And what chemotherapy did your father receive? If one regimen causes too many side effects, the oncologist can reduce the dosage, or delay the infusion. It doesn't necessarily means that a lower dosage or a delay will be less effective as the full dosage. Clinical trials test the maximum tolerated dosage, but do not test the minimum effective dosage. David might step in to word this better than I do.

    Doctors can also switch to another chemotherapy regimen. There are now a couple of other options.

    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. Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    Nov 2028 CT-scan: Lung nodules are shrinking

  3. #3
    Thank you, Brigitte. I appreciate your response so much.

    I don't know a lot since I am not there I know my aunt (his big sister) is going with him and his wife and she tries to keep me informed.

    I don't know if that was done. All I know is it is metastatic, non-resectable adenocarcinoma. I hope that was done though, because my aunt says they want to do genetic testing and immunotherapy. All I really know is that they are trying to do the Moonshot clinical trial with Dr. Overton at MD Anderson Houston.

    My aunt said "standard chemo," whatever that means. She said there are two drugs in it. One is Gem something and she doesn't know the other.

    Two of my great grandparents died of pancreatic cancer, one on each side...my grandpa's mother and my grandma's father. But they were both in their 80's. My dad just turned 60 in April.

  4. #4
    Genabroxane is one chemo chemical. And I forgot to say that they took blood a week ago for genetic testing and said it would take 5 weeks to get results.

  5. #5
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
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    Amy,
    Your father is in good hands at MD Anderson. The chemotherapy is probably Gem-Abraxane--drug companies have a way to give impossible names to drugs! It takes a while to learn them. Gem-Abraxane is one of the two first-line chemotherapies.

    Genetic testing is a good thing. However, just know that genetic testing is different from molecular testing. Genetic testing will find mutations inherited through parents, some of which can lead to cancer. Molecular testing will look at mutations in the tumor itself or in the metastases. These mutations occur randomly or under the influence of the environmental factors, and can also lead to cancer. Both testings are good to do if possible.
    __________________________________________________ ___________________
    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. Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    Nov 2028 CT-scan: Lung nodules are shrinking

  6. #6
    I asked my aunt and she said she thinks they are doing molecular testing. If not, at least she knows to make sure it's done. She is incredibly smart and diligent.

    Right now he is being treated locally, but his doctor just gave info to his research nurse so that she can get it to MD Anderson ASAP. We are hoping he will be accepted. You see, he has been excluded from others because of a sulfa-drug allergy, not being able to have surgery, and having hepatitis C.

    My dad smoked until the late 90's. I know that has a lot to do with most cancers. He has also been overweight for much of his adult life.

    His wife (number 3) and I are on okay terms. The rest of my family merely tolerates her. She posted a picture of my dad's hair that fell out on Facebook and it hit me like a gut punch.

  7. #7
    I read your timeline. Can you tell me what NED means?

  8. #8
    Senior User
    Join Date
    May 2017
    Posts
    103
    Quote Originally Posted by schnauzermama82 View Post
    I read your timeline. Can you tell me what NED means?
    No Evidence of Disease
    1/8/17 Diagnosed with Operable PanCan
    1/31/17 Started Immune therapy clinical Trial at Hopkins
    2/13/17 Whipple Surgery
    5/8/17 Completed SBRT treatment at Hopkins
    5/16/17 Started first cycle of Chemo Gemcitabine and Xeloda
    6/1/17 Admitted back into Hopkins with Gas in Abdomen from perforated bowel
    7/5/17 After a week in the hospital and a months rest delay Chemo for 3 months
    7/21/17 Quarterly CT Scan shows no evidence of Recurrence
    9/29/17 Quarterly CT Scan shows local recurrence of growth on the pancreas body
    10/11/17 Begin Folfirinox regimen for the foreseeable future
    12/27/17 After 4 cycles of Folfirinox Quarterly CT shows no spread of cancer and marginal shrinkage of tumor
    3/19/18 After 5 more cycles of Folfirinox my Quarterly CT Scan showed no spread.
    4/11/18 CA19-9 down from 4800 in December to 384
    6/8/18 PET Scan shows no mets, still local to pancreas. CA19-9 down to 165
    7/5/18 Started Proton Therapy at the University of MD, 36 treatments over 18 days

  9. #9
    Experienced User
    Join Date
    Dec 2017
    Posts
    75
    Hi Amy. I'm sorry you have to be here seeking help.

    My mom's also in stage 4 now. To be honest, this is not an easy journey. Often it takes the whole family to gather courage and support to fight on. Please be strong and positive for your dad, as there's always hope.
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes.
    Jan 2018 - CA19-9 dropped to 30 kU/L 4 weeks after surgery.
    Feb 2018 - 3 rounds of S1
    June 2018 - CA 19-9 from 50 to 170 KU/L. CT + PET confirmed recurrence at remainder of pancreas + peritoneal mets.
    July 2018 - Started Gem/Abraxane
    Sep 2018 - Peritoneal mets disappeared on CT. CA 19-9 dropped to 35.
    Nov 2018 - Finished 4th round of Gem/Abraxane. Clear CT. CA19-9 dropped to 22.

  10. #10
    Regular User
    Join Date
    Mar 2018
    Posts
    23
    Hi Amy,
    My dad too was diagnosed at 60. It was quite a shock for us because he's never had other health conditions.. in fact, he ran over a mile and a half on his 60th birthday and a couple weeks later he was diagnosed with terminal cancer. Crazy. Anyway, he started on FOLFIRINOX chemotherapy, which really worked wonders for him. From that chemo we were given about 4 months of "not that bad" disease. He was tolerating chemo well, had decent energy and appetite etc. Then they noticed some chemo resistance and they switched him to GEM/ABR (what your father is on). It did not work for my dad AT ALL and just weakened him. It's important to note that every patient is different, and what works for one may not work for another. A mistake that I think was made was keeping my dad on Gem-Abraxane too long. If doesn't seem to be working, switch chemos before the full cycle, you can always go back to the original chemo later. (that is a lay person advice, David or Brigitte are moderators and may say otherwise and listen to them) I personally think that my dad should have been switched back to FOLFIRINOX sooner.. however, we are still waiting to see if this round is accomplishing anything at all (may have already built resistance to it). Unfortunately, these chemos work or don't work indiscriminately. It's so frustrating, because there really isn't any control.

    When you go and see him, expect the worst and then you wont be shocked. He will have probably lost hair, lost weight, and have very low energy. I will say, it is much easier to be near them because of how quickly their appearance can change. My dad looks like a different person than 10 short months ago. It's tough. I have been grieving pretty heavily for a long time. On top of that, I'm pregnant and want so badly for my dad to meet my little girl in 4 months. I pray he makes it.

    I'm so sorry you and your family are going through this. It is a very difficult journey. Wishing and praying for the best for your dad.

    Melanie
    Last edited by MelanieB; 07-19-2018 at 07:37 PM.

 

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