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Thread: Mom diagnosed with Stage III/IV Pancreatic Cancer; treatment options in NJ?

  1. #1
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    Lightbulb Mom diagnosed with Stage III/IV Pancreatic Cancer; treatment options in NJ?

    It's been a month since my mom was admitted to the hospital with jaundice and subsequently diagnosed with pancreatic cancer through CT scans and ERCP biopsy. Mom's insurance network largely restricts her options within the state of New Jersey and afaik there is only one NCI designated cancer treatment center in NJ - Cancer Institute of NJ. After three weeks battling high bilirubin levels in the hospital with two stents placed through ERCP and eventually an external biliary drain (PTC drain), my mom was released into a rehab facility with still elevated bilirubin levels.

    Mom had her first visit with her oncologist at CINJ last week and was told to continue with the rehab for about two weeks and check back on her liver function and how she does in the two weeks' time. I have reached out to Pancreatic Cancer Action Network to get the molecular profiling process started but that will probably take more than a month. In the meanwhile, I have been reading about the disease and possible treatments.

    One thing that makes me feel very uneasy is the fact we are kind of in a wait-and-see period. I have been researching specialists that my mom can see for 2nd opinion and I wonder if there are alternatives to CINJ that may offer more targeted and tailored care to my mom's condition. We have full faith in her oncologist but we have some doubts about CINJ's support system for treating pancreatic cancer. I would love to hear if anyone had experience with CINJ and other treatment centers in New Jersey. I learned that MD Anderson has partnerships with Cooper University Healthcare (http://www.cooperhealth.org/departme...ncer-institute) and Summit Medical Group (http://www.summitmedicalgroup.com/service/group/cancer/) but there aren't much information about their strengths in pancreatic cancer treatment.

    Thanks in advance for any feedback. It's been an extremely tough several weeks for us and forums like this offer light and hope when you feel like you can't catch a break with everything else.

  2. #2
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    My husband had his Whipple surgery at CINJ. What area of NJ do you live in? We used an outside oncologist closer to our home for treatments. We also got first opinions from Sloan Kettering in NYC.
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/17/17-Whipple
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED

  3. #3
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    Thank you and congrats to your husband's successful Whipple surgery at CINJ. We live in Princeton area and it's about 35 minutes drive to see her oncologist at CINJ. I'm thinking about seeing doctors from Sloan Kettering in NYC (though we have to pay out of pocket). Would it be possible to recommend a doctor that you and your husband are happy with?

    Quote Originally Posted by jdooley925 View Post
    My husband had his Whipple surgery at CINJ. What area of NJ do you live in? We used an outside oncologist closer to our home for treatments. We also got first opinions from Sloan Kettering in NYC.

  4. #4
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    Unicorn, We used an oncologist in Edison, NJ which would be too far for you to travel for any chemo treatments in my opinion. We were referred to him by the doctor who did my husband's EUS. However, if your mother gets to the point of surgery, I was very pleased with the surgeon but he doesn't get involved until you are eligible for surgery. We did not like the oncologist we had at Sloan Kettering and my husband wasn't thrilled with the surgeon we saw either.
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/17/17-Whipple
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED

  5. #5
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    Jdooley, thanks for sharing. Is the surgeon from CINJ/RWJ? If so, I think I know whom you are referring to. I certainly hope my mother will get to the point of surgery. Keeping our fingers crossed.

    Quote Originally Posted by jdooley925 View Post
    Unicorn, We used an oncologist in Edison, NJ which would be too far for you to travel for any chemo treatments in my opinion. We were referred to him by the doctor who did my husband's EUS. However, if your mother gets to the point of surgery, I was very pleased with the surgeon but he doesn't get involved until you are eligible for surgery. We did not like the oncologist we had at Sloan Kettering and my husband wasn't thrilled with the surgeon we saw either.

  6. #6
    Experienced User Dand's Avatar
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    Not sure where you live in NJ... is traveling to NYC Memorial Sloan Kettering an option? They also have one of their centers in Basking Ridge NJ & will have another completed in Montvale NJ early 2018. In many cases you can see an Oncologist (or go on a clinical trial) in NYC & be treated in NJ. After seeing jdooley post guess you need to pick the right oncologist at any Facility... my wife has been at MSK NYC on a trial for over a year & we have been impressed with her Oncologist & her team. We also live in NJ.
    Last edited by Dand; 08-26-2017 at 07:42 AM. Reason: Typos
    BRCA2 Positive
    7/26/16-CT Scan with Liver Biopsy diagnosis Stage IV Pancreatic Cancer + metastatic of liver.
    8/2/16-Clinical Stage II Trial Cisplatin/Gemcitabine + Veliparib
    8/15/16- CA 19-9=37,750 U/mL/CEA 126.5 ng/mL
    9/05/16- CA 19-9=19,778 U/mL/CEA 74.9 ng/mL
    9/21/16- CT Scan -13.10% down from Bl (SD)
    9/26/16- CA 19-9=24,528 U/mL/CEA 61.3 ng/mL
    10/17/16- CA 19-9=24,792 U/mL/CEA 42.9 ng/mL
    11/2/16-CT Scan -22.30% down from Bl
    11/07/16- CA 19-9=24,895 U/mL/CEA 30.2 ng/mL
    12/09/16- IR VA Power Port
    12/14/16-CT Scan -26.20% down SD)
    12/19/16- CA 19-9=16,845 U/mL/CEA 16.0 ng/mL
    1/25/17- CT Scan -29.20% down (SD)
    1/30/17- CA 19-9=12,716 U/mL/CEA 14.1 ng/mL
    3/20/17- CA 19-9=5,744 U/mL/CEA 10.9 ng/mL
    3/27/17- CA 19-9=4,840 U/mL/CEA 10.8 ng/mL
    4/3/17- CT Scan -41.50% down (SD) (PR)
    5/24/17- CA 19-9=1,934 U/mL/CEA 10 ng/mL
    6/5/17-CT Scan -50% down (PR)
    6/19/17- Stage II Trial Mono Veliparib
    7/17/17- CA 19-9=1,336 U/mL/CEA 9.1 ng/mL

  7. #7
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    Hi Dand, my mother can probably manage a visit or two to NYC but I don't think that's a long term solution as it will be at a minimum an hour and a half trip. I have since spoken with a local oncologist and GI doctor in our area. The general impression I got was that there aren't that many options. My mother has just had what looked like an infection and had to be admitted to a hospital. So she is still not stable enough to seek any treatment. Thankfully her bilirubin level has come down below 3. If we can manage to stabilize her condition in the next week or so, we will see if she will be well enough for palliative chemo.

    Quote Originally Posted by Dand View Post
    Not sure where you live in NJ... is traveling to NYC Memorial Sloan Kettering an option? They also have one of their centers in Basking Ridge NJ & will have another completed in Montvale NJ early 2018. In many cases you can see an Oncologist (or go on a clinical trial) in NYC & be treated in NJ. After seeing jdooley post guess you need to pick the right oncologist at any Facility... my wife has been at MSK NYC on a trial for over a year & we have been impressed with her Oncologist & her team. We also live in NJ.

  8. #8
    Moderator Top User ddessert's Avatar
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    Several of us travel some distance for expert opinions and take the plan back to have it implemented at a smaller center at home.
    MD Anderson is 4.5 hours away from me. I would visit their oncologists for updates and do all the treatment at home, 20 minutes away.
    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-Dec 2016 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  9. #9
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    My husband currently goes to Sloan in Middletown,NJ which is much closer. We are happy with our oncologist but it seems the waiting time for treatments keeps getting longer and longer. They just opened in January and are definitely understaffed.

  10. #10
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    Unicorn...If your mom does get better enough to have chemo, I am sure that CINJ is well equipped to deal with pancreatic cancer. I just took my husband to a facility closer to home to get the chemo because he had to be there a lot and he had diarrhea from the chemo and needed to be as close to a bathroom as possible.
    9/16-68 year old husband diagnosed with Stage 3 unresectable pancreatic cancer
    9/16-12/16- Folfirinox 6 rounds of treatment
    12/16-CT scan, no signs of disease and normal tumor markers
    1/17-2/17- IMRT radiation 28 treatments with Xeloda
    3/17- CT scan, no signs of disease and normal tumor markers
    5/17- CT scan, no signs of disease
    7/17/17-Whipple
    7/31/17- Pathology report: "No residual tumor, complete response to treatment, grade 0. T0N0M0. NED

 

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