A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 7 of 7

Thread: 2nd opinion MD Anderson

  1. #1

    2nd opinion MD Anderson

    Hi all,
    I've been following this forum for a while off and on, this is my first post. My dad was diagnosed 2 years ago, stage 11B-III, successful Whipple but localized recurrence about 8 months later. Since then it has been ups and downs. At the moment things are not going well and recent scans show 2 small lung nodules (have not been biopsied) and progression of the tumor in the pancreas. He's responded well to Folfirinox (at one point reducing his tumor markers to near normal a year ago) but the side effects have been very difficult and it just doesn't seem sustainable on an on-going basis. Every time he's off chemo for any length of time his CA -119 rises and now it has risen the highest it has been yet (13K). He just recently started a new regimen on Gemzar Abraxane which we hope will start to bring his markers down again. He has had a lot of abdominal pain throughout this ordeal whenever the tumor grows..the pain at times has seemed disproportionate to the amount of cancer he has. He's had a celiac plexus block recently which helped some but not enough and he's been on different pain killers. My dad is tough and I know the pain must be brutal; in my nearly 44 years as his daughter I've really never heard him complain about pain or discomfort until now. He's been to the ER a few times with uncontrollable pain and had to be admitted.

    We are concerned that things are starting to progress quickly and he may not have much time left. His primary oncologist is at Dana Farber in Boston but he's had treatment in other places based on where he spends the summer. My dad has been interested in getting a 2nd opinion at MD Anderson in Houston. Although his oncology team at DF is by all accounts some of the best in the country, we have struggled with what we view as some questionable decisions and errors made during this process. Dana Farber seems to be telling him to 'get his affairs in order' at this point but my dad has been so strong and fought so hard, I don't think he is ready. We've been told there aren't any clinical trials that would be likely to improve things more than the existing treatment since he has at times responded well to chemo.

    We are considering doing a consult with MD Anderson; my dad feels that he owes it to himself and his family to do this and I support that 100%. Our understanding is MD Anderson may at times offer more cutting-edge treatments and is less conventional/establishment than some of the large east coast institutes like DF and MSK. All are excellent institutions for sure, this is just what we've been told by some other friends and patients. If anyone has any thoughts or feedback please let me know. Thanks so much, blessings to you all.

  2. #2
    Experienced User
    Join Date
    Dec 2017
    Posts
    84
    I'm sorry about what your dad has been going through. If it is your dad's will to fight, give it a try. Getting a 2nd opinion won't hurt anything.
    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.

  3. #3
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Posts
    2,441
    Blog Entries
    7
    MD Anderson is really one of the top places in the country for pancreatic cancer and their advice could be valuable. However, my sense of their value to stage 4 patients is colored by patient comments from many over the years.

    If you are interested in and qualify for one of their clinical trials, you will likely be given more interest than if not. Most of the stage 4 patients I’ve seen feedback from say that they were not given much hope (the dreaded, “get your affairs in order”).

    I’m assuming that dad has gone the genetic testing route and it turned up nothing useful? That is one of the lowest-hanging fruit options that we have.
    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
    Quote Originally Posted by ddessert View Post
    MD Anderson is really one of the top places in the country for pancreatic cancer and their advice could be valuable. However, my sense of their value to stage 4 patients is colored by patient comments from many over the years.

    If you are interested in and qualify for one of their clinical trials, you will likely be given more interest than if not. Most of the stage 4 patients I’ve seen feedback from say that they were not given much hope (the dreaded, “get your affairs in order”).

    I’m assuming that dad has gone the genetic testing route and it turned up nothing useful? That is one of the lowest-hanging fruit options that we have.
    Thanks. He has had tumor testing done, the mutations he has are the most common, I don't recall them off hand.

    Since he has not had the lung nodules tested it is not confirmed Stage 4, their appearance on the PET scan has not been that much of a concern to his doctors apparently. In any event I do not know based on how things are going at the moment if we will get there or not. He has never had any other symptoms of advanced pc besides pain; no jaundice, back pain, vomiting, etc. But I realize symptoms vary so much from patient to patient.

    I'm troubled my his doctors' decision not to have him on a maintenance dose when things were going well last fall. His tumor markers were near normal after Folfirinox and 30 rounds of radiation. He felt good, no pain, decent energy, etc. but within 3 months he began to have symptoms again. It didn't make sense to me that they wouldn't have kept him on a maintenance dose at that point to keep the tumor markers in check.

  5. #5
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Posts
    369
    In regards to MD Anderson and Dana Farber, I have heard comments that confirm what David is saying. These places are top cancer research centers, but I'm not sure they really fight for their patients or provide the most creative care beyond their clinical trials.

    For 3 years, I've been treated at BIDMC, next door to Dana Farber. I'm not trying to sell their services or create any discord between the two institutions. Both have pros and cons; in fact, physicians of both organizations know each other, work together, and teach at Harvard. However, I believe that BIDMC is getting a high reputation for its pancreatic cancer department. I'm treated by a multidisciplinary team specialized in pancreatic cancer, whose members communicate among each other! I always found that they were fighting for me and that they provided me with innovative treatments. I've metastatic pancreatic cancer since last September, and right now, I'm still doing very well.

    It might be worth considering a second opinion with one of BIDMC oncologists. I'm very happy with mine. If you wish, I'll be happy to provide her contact info.


    PS: Do you know whether they tested the tumor samples for HA? There is a clinical trial going on that seems to give some relatively good results for patients with high level of HA in the microenvironment surrounding the tumor or mets.
    __________________________________________________ ___________________
    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

  6. #6
    Quote Originally Posted by BrigitteM View Post
    In regards to MD Anderson and Dana Farber, I have heard comments that confirm what David is saying. These places are top cancer research centers, but I'm not sure they really fight for their patients or provide the most creative care beyond their clinical trials.

    For 3 years, I've been treated at BIDMC, next door to Dana Farber. I'm not trying to sell their services or create any discord between the two institutions. Both have pros and cons; in fact, physicians of both organizations know each other, work together, and teach at Harvard. However, I believe that BIDMC is getting a high reputation for its pancreatic cancer department. I'm treated by a multidisciplinary team specialized in pancreatic cancer, whose members communicate among each other! I always found that they were fighting for me and that they provided me with innovative treatments. I've metastatic pancreatic cancer since last September, and right now, I'm still doing very well.

    It might be worth considering a second opinion with one of BIDMC oncologists. I'm very happy with mine. If you wish, I'll be happy to provide her contact info.


    PS: Do you know whether they tested the tumor samples for HA? There is a clinical trial going on that seems to give some relatively good results for patients with high level of HA in the microenvironment surrounding the tumor or mets.
    Thanks for your response, that is helpful. That is something to consider in terms of getting another opinion at BIDMC. Would be a lot more convenient at this point than MD Anderson, although we may still pursue that. I'm sure that your oncologist and my dad's are colleagues as they all do work together to some degree.

    I don't know about HA. We saw another oncologist last week who is considered to be more 'experimental' and up on all the clinical trials but he did not think there was much that would be more helpful than what my dad is already doing. His mutations were the most common as I understand it.

  7. #7
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Posts
    369
    With some other patients, we call them the boring "mutations" because they are not "druggable". My mutations are KRAS and P53, which basically every pancreatic cancer patients have. Hyaluronic Acid (HA) is something found in the tumor tissues around the cancer cells. I didn't have HA, so I was not eligible for that trial from Halozyme drug.

    Wish you to find the right treatment for your dad.
    Kindly, 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

 

Similar Threads

  1. Mom being sent to MD Anderson in Houston for 2nd opinion
    By NottaCheesecake in forum Lung Cancer Forum
    Replies: 0
    Last Post: 01-07-2012, 09:12 PM
  2. 2nd opinion advises radiotherapy, 1st opinion only hormone t
    By Nitram in forum Prostate Cancer Forum
    Replies: 4
    Last Post: 09-08-2009, 05:17 PM
  3. I'm feeling guilty..should we look for a 2nd opinion?
    By Cisco's Daughter in forum Liver Cancer Forum
    Replies: 1
    Last Post: 08-07-2007, 07:23 AM
  4. Pathologist wants a 2nd opinion of skin biopsy of mole
    By macandcheese in forum Melanoma and Skin Cancer Forum
    Replies: 0
    Last Post: 03-06-2007, 01:26 AM
  5. SUSPECTED CML ? NEED 2ND OPINION..............
    By Lisbeth Edwards in forum Leukemia/Myelodysplastic Syndrome Forum
    Replies: 0
    Last Post: 07-04-2005, 03:34 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •