Discussion Board Forums Introductions! My Introduction

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  • #80158
    chezwrightaol-com
    Participant

    Matt…..it is a tough decision. I was right where you are….feeling overwhelmed by the surgery and not up to doing chemo/radiation or a trial ( I had to make a decision about the trial within 5 weeks of surgery). My doctor did not push one way or the other, but my GP leaned toward not doing it. So I am one that did not do the chemo..but I did not have any invasion either. There are people on this site with clean margins who did do the chemo and it still came back. There does not seem to be any reason to why for some it does come back in spite of follow-up treatment and for others it doesn’t. It seems to be the nature of this beast. It also took seemingly forever for the incision to heal…months really and that was the most bothersome. I had an incisional hernia which was repaired two years after the initial surgery and it healed quicker.
    It really is a tough decision. Others have posted here who did do the follow-up chemo and many are saying it was the right decision.
    We are here for you whatever you decide. Hug those children tight! I have 14 and 15 year old girls who were only 10 and 11 when I was diagnosed. I couldn’t believe I would not be here for them to grow up.
    Kathy
    (I didn’t know that MRI was a choice. I always have had CTScans and have wondered about the radiation).

    #80157
    marions
    Moderator

    Matt….The question of whether MRI or CT scan are better on detecting recurrence had been addressed at a symposium a few of us had attended. What we learned is that one is not better than the other but that it depends on the expertise of the physicians interpreting the images. When we hear that a particular institution prefers one imaging method over another than that is related to the preference of the physicians interpreting the images.
    Hugs,
    Marion

    #80156
    pfox2100
    Member

    Hi Matt it sounds like your last few months have been quite busy. I too had a resection at the end of January and was left with segment 2 and 3 of my liver out of the 8. I too am now facing the question of “to chemo or not to chemo.” I had also posted something last night in the chemo forum and have getting some awesome responses :) I will let you know that I also have been doing chemo since August on the same regimen. Though everyone is effected differently when it comes to chemotherapy, it is my understanding that this regimen is pretty well tolerated compared to some other lines that are used for cc. It has also been recommended for me to do adjuvant chemo as well which I have decided to follow through with. Fortunately I have tolerated this regimen quite well with little side effects and know how my body will react and respond to these medications. Feel free to ask me any questions as well. Good luck on your continued journey and success!
    Porter

    #80155
    kvolland
    Participant

    Matt –
    Your story still really does sound a lot like my husband’s. We are currently done with adjuvant chemo and are doing 5 weeks of chemoradiation (5FU continuous infusion with 25 IMRT doses).
    It does hit you really hard when you are healing from the surgery which is such a BIG surgery and they start hitting you with chemo and follow ups. We totally understand that. We were day four after surgery and Mark was finally making sense when he talked and then in comes this oncologist we had never met and starts talking about long term plans, chemo, radiation, recurrence and all that. That was only the second time I had cried at that point. We had thought surgery was all we were going to have to do.
    This really feels like a roller coaster ride through out with lots of highs and lows. No one wants a ticket to this ride either (and I normally love roller coasters too) :)
    I would be more than willing to share our experiences if you are interested. I am always willing to take a phone call (360) 880-0327 or email dazoo3563@comcast.net.

    KrisV

    #80154
    mattreidy
    Participant

    Here’s a timeline with a few more details of my journey thus far:

    Wed 12/11/2013 Initial Visit to General Practitioner:
    After several weeks of itching, fatigue, and mild abdominal discomfort I finally go to my GP where they drew blood for some testing.

    Thu 12/12/2013 Emergency Room Visit:
    A 6:00pm call from my GP with results from the blood testing the previous day freaks me out and I go to a local ER hoping I have gallstones or Hepatitis and not this cancer thing on the Internet that I don’t even know how to pronounce.

    Blood test results from 12/11/2013 were Bilirubin (total) 5.3, ALT 741, AST 352, Alk Phosphatase 833

    At the ER they do more blood tests as well as urine tests. They do an ultrasound and a CT with contrast. CT shows intrahepatic biliary dilation. UltraSound shows mildly dilated common bile duct, mild intrahepatic biliary dilation, and mild thickening of gallbladder wall.

    I’m discharged from the ER after midnight. I’m scared and exhausted and decide to take the following day (Fri) off work to search for a specialist. I chose a local Gastroenterolgy Hepatology practice associated with the local medical college, Virginia Commonwealth University / Medical College of Virginia (VCU/MCV) and was able to get an appointment with one of the doctors for Tue of the next week. Now I’ve got all weekend to continue worrying and doing my own research. I had Hepatitis blood tests even though it was a long shot, and the results were not yet in, so I was still hoping that might be it.

    Tue 12/17/2013 Specialist Visit:
    This was a brief visit just resulting in more blood tests.

    Wed 12/18/2013 Admitted to VCU/MCV for Testing:
    I’m back at work and receive a call at 9:45am from the specialist I saw yesterday. He says to me “I have your blood test results and am very concerned. I am admitting you to the hospital for more testing. Go home now and pack a bag. Expect to spend a few nights. Someone will be calling you to tell you where to go.” I am in shock and really afraid now. I call my wife at her work and give her the news, find my boss and let her know, and head out.

    I’m at the hospital with my wife by Noon. I’m subjected to an MRI/MRCP and told that, depending on the results, I can expect a liver biopsy and/or ERCP the following day. I have to wait on results from the MRCP until the following day.

    By now I’ve let my parents (78 & 79 years old) who live in Western NY State know what’s going on and my mother hops on a plane that afternoon. She arrives in Richmond, VA that same evening for support and to help care for the kids.

    Thu 12/19/2013 “C” Day:
    My wife and mother are with me when the attending physician and a fellow break the news that they see blockage and strongly suspect cholangiocarcinoma.

    An ERCP is scheduled but at the last minute they decide not to move forward with it because the head doctor of the local VCU/MCV practice had been consulting with Dr. Greg Gores at the Mayo Clinic and they believe I may be a good candidate for Mayo’s protocol that involves chemo and radiation followed by a liver transplant. I am told that had they performed the ERCP and taken brushings locally, I would not be able to be considered for the Mayo protocol.

    I’m in communication with the financial office at the Mayo Clinic at this point so that they can determine if their protocol is covered by my insurance. It was just past 5:00pm ET so I was forced to wait until the following day to hear if it was or not.

    Fri 12/20/2013 VCU/MCV Discharge:
    I’m still waiting to hear back from the Mayo Clinic’s financial office on the insurance coverage. I asked my attending physician what people with no insurance or people who’s insurance doesn’t cover a transplant do? He looked at me with a stone cold face and said “They die. That’s our system in the US.”. My jaw dropped open. At 47 years old and without a single health issue my entire life I never read the fine details of my health insurance. Annual maximums? Lifetime maximums? Coverage limitations? How can such things exist, I thought.

    Thankfully, I work for a fairly large company and have great insurance that does cover transplants and has no annual or lifetime maximums. I received word mid-day that the Mayo protocol would be covered. In fact, my insurance would even cover the related travel and lodging expenses for myself and a caregiver. Amen!

    I was anxious to get out to Mayo and begin the testing/evaluation for their protocol and started working with them to that end immediately and managed to get set up for appointments starting Mon, 12/23/2013.

    While waiting to be discharged, I made one-way travel plans for my wife and I to fly out to Rochester, MN on Sun, 12/22/2013.

    I was discharged from the hospital and home by dinner time that evening. Our heads were spinning. So much to do to get ready to go… so many unknowns… not being home for Christmas with the kids…! My father made arrangements to drive down to VA to be with my mother and four kids for Christmas and beyond.

    Mon 12/23/2013 – Fri 01/03/2014 Mayo Clinic Transplant Protocol Evaluation:

    I won’t detail all of the testing and meetings here but suffice it to say that I’m no longer afraid of needles or medical tests and procedures and, other than cholangiocarcinoma, have a completely clean bill of health.

    While in Rochester, MN we stayed at the Gift of Life Transplant House and I can’t say enough about how wonderful it was. We met lots of supportive people and the rooms and common areas were beautiful.

    About a week into the evaluation I had an ERCP and EUS where stents were inserted and within 2-3 days, all of my symptoms were alleviated. I wanted to just pretend this was all a dream. I felt great and other than a weight loss of about 20-25 looked completely normal.

    Somewhere along the line we were told that resection was an option for me. We had no idea going into this that it was an option for anyone, so we were on cloud 9 with the news.

    Surgery was scheduled for Fri, 01/17/2014, so we headed back home to Richmond, VA for a week of “normalcy”. My wife and I both went back to work for the week and made plans for other family members to watch the kids while we went back to the Mayo Clinic for surgery.

    Fri 01/17/2014 Surgery:
    The first thing on the agenda was a laparoscopic “staging” where I’d be visually checked for metastasis and also have some lymph nodes pulled out for examination/pathology. At any sign of spreading, I’d be closed back up and no resection would be performed. I prayed to wake up with more than a small hole in my belly button, and I did. The surgery itself lasted about 6 hours.

    Unfortunately, the drain that was put in my right side was filling up with bile pretty quickly and it was determined that I had a significant bile leak somewhere and they needed to operate again to find and fix the leak. That was scheduled for the following morning.

    Sat 01/18/2014 Surgery to Find and Fix Bile Leak:
    This surgery took about 2 hours and they successfully found and tied off a leaking bile duct left over from the liver resection.

    Sun 01/19/2014 – Mon 01/27/2014 Mayo Clinic In-Patient Surgery Recovery:
    I spent a total of ten days in the hospital, including the two days of surgery. I had a fair amount of water retention from my waist down to my feet and initial difficulty urinating on my own but eventually everything got back to normal. The room at Mayo was private and, by my limited experience, very very nice.

    While recovering, I was visited by a Medical Oncology Fellow and his Attending. They recommended adjuvant chemotherapy with gemcitabine/cisplatin or gemcitabine alone for four to six cycles.

    Honestly, I was in no mood whatsoever to discuss chemotherapy with them while trying to recover from surgery.

    01/29/2014 Mayo Clinic Post-Surgery Doctor’s Summary:
    “Mr. Reidy is a pleasant 47-year-old gentleman with a recent diagnosis of de Novo perihilar cholangiocarcinoma. On January 17, he underwent a left hepatectomy, Roux-en-Y hepaticojejunostomy, and hilar and celiac lymphadenectomy and cholecystectomy. His postoperative course was complicated by a bile leak, for which he was taken back to the OR for an abdominal exploration and ligation of the posterior bile duct branch. The remainder of his hospital course was uneventful. He does have partial dehiscence of the skin suture with drainage, for which he has been applying wet dressings three times a day.”

    Stats:
    [list=*]
    [*]December 2013 CA 19-9 was 453 unit/mL[/*]
    [*]January 2014 surgical pathology demonstrated moderately to poorly differentiated cholangiocarcinoma, 2.5 x 1.4 x 0.5 cm in size with involvement of the common hepatic and left hepatic bile ducts[/*]
    [*]January 2014 surgical margins were negative. Multiple lymph nodes, as well as the gallbladder, were also negative for malignancy. Perineural invasion, as well as small vessel invasion was identified[/*]
    [/list]

    Closing Thoughts & Questions:

    I still have yet to decide if I am going to proceed with the adjuvant chemotherapy or not. I’m still not prepared mentally or physically for it. That and the lack of data suggesting that it’s worth the risk are big deals to me. I desperately want to live for a long time but don’t want to just trade one evil for another (kidney problems, nerve problems, hearing loss, etc) brought on by chemo drugs, particularly if there is no evidence that it’s helpful in the long run.

    I’d love to hear opinions or experiences from those with similar circumstances on the subject.

    I’m expecting to go back to the Mayo Clinic this summer for “surveillance” where they will do lab tests (check my CA 19-9 I assume) and perform a CT scan.

    Question: Which is better for detecting recurrence, CT or MRI? I’ve had a LOT of radiation exposure in the past 10 weeks and would prefer to limit it going forward. It just can’t be good for you…

    The stories on this forum both break my heart and give me hope. I really appreciate the level of caring and sharing going on here and hope to contribute myself, for a long long time.

    -Matt

    Matt@eReidy.com
    (804) 464-7245

    #80153
    darla
    Participant

    Hi Matt,

    Also want to welcome you and say that I am glad things have gone so well for you. Hope this continues into your recovery.

    Darla

    #80145
    january
    Member

    So happy that surgery was an option for you and it certainly sounds like a resounding success.

    Best wishes for your recovery,

    January

    #80146
    pfox2100
    Member

    Matt, I too would like to welcome you. As others have said, it is wonderful to hear that you have had a successful resection and many blessings to you while you are in recovery.
    Porter

    #80147
    lisacraine
    Participant

    Matt,
    Welcome to this amazing and compassionate group of friends. I am so happy to read you had a successful resection. Sorry to read about your complications but it sounds like you are on the road to recovery.
    Lisa

    #80148
    kvolland
    Participant

    Matt –
    Welcome the family here. Your story sounds like my husbands although he did have some right sided pain which we thought was gallbladder pain. Ultimately he developed severe jaundice. We were referred to Seattle where we met our brilliant surgeon and got the awful diagnosis. He was diagnosed in May 2013 and he is only 50.
    My husband’s surgery was 14 hours and then he had 12 day hospital stay. His recovery was really slow too. He lost about 50# which thankfully he had to lose. He dropped from 240# to 190#. Protein is your biggest friend right now. All those good things like meats, eggs, cheese, milk, etc (if you eat them) and then you can do whey protein powder and make protein shakes. We used frozen fruit, ice cream, yogurt, milk and a scoop or two of protein powder then blend it. He didn’t particularly like them but he drank them.
    Are you planning on doing adjuvant chemo? or radiation? We just finished 6 months of every other week Gemzar and Oxaliplatin. And right now we are sitting in the hotel room waiting to start chemoradiation tomorrow of 25 doses IMRT with a continuous infusion of 5FU.

    Hang in there and keep us posted.

    KrisV

    #80149
    mattreidy
    Participant

    Randi,

    Given the whirlwind of the past 10 weeks from diagnosis to resection, I consider myself one very lucky, unlucky, guy… if you know what I mean.

    Thank you for your reply and welcome.

    My doctor at Mayo is Gregory J. Gores and my surgeon is David M. Nagorney.

    Gores Bio: http://www.mayoclinic.org/biographies/gores-gregory-j-m-d/bio-20053478
    Nagorney Bio: http://www.mayoclinic.org/biographies/nagorney-david-m-m-d/bio-20053821

    randigb wrote:
    Dear Matt,

    Congrats on your successful resection!! Welcome to the site and sorry you had a reason to be here. You are among the very lucky that get this disease to have been able to have surgery. I also went to the Mayo in Rochester, MN. Mine was for a third opinion. I found it to be very nice and reassuring to be there. Who was your doctor?

    Here’s wishing you continued health in your recovery.

    Hugs,
    -Randi-

    #80150
    Randi
    Participant

    Dear Matt,

    Congrats on your successful resection!! Welcome to the site and sorry you had a reason to be here. You are among the very lucky that get this disease to have been able to have surgery. I also went to the Mayo in Rochester, MN. Mine was for a third opinion. I found it to be very nice and reassuring to be there. Who was your doctor?

    Here’s wishing you continued health in your recovery.

    Hugs,
    -Randi-

    #80151
    marions
    Moderator

    Matt…..no disagreement on the description of cancer. There is however; very good news embedded in your message to us in that you had been eligible for a resection. As Lainy has said: Congratulations. Recovery from such an invasive surgery can range from alright to complicated and I believe you fall somewhere in the middle of this spectrum. Not how you must feel, but according to the thousands of stories published on this site, you have faired rather well.
    You will move forward, dear Matt; it simply takes time and patience. Your body must recuperate and that generally happens in small increments. Many have been able to resume their employment within in a few weeks sometimes part time or even full time. I wish for the best for you.
    We always are happy to grow participation on this board because; each and everyone brings wisdom and support to this site. Therefore, thank you so much for joining in.
    Any questions you may have and any advise you would like to share with this special group of people please do so. We strongly believe in the motto that we are in this together – all the way.
    Hugs,
    Marion

    #80152
    lainy
    Participant

    Dear Matt, welcome to our fabulous family. You certainly did all the right things and Congratulations on your successful resection even though there were some bumps in the road. you get a big YIPPEE! I hope the rest of your recovery goes real smoothly. You have come to the right place for help and support. Wishing you the very best.

    #9632
    mattreidy
    Participant

    Hello Everyone,

    I’m a 47 year old living in Richmond, Virginia, who was diagnosed in December 2013. I have an amazing wife and four wonderful children ages 5, 7, 15, and 18. My youngest started kindergarten and my oldest started college this past Fall.

    Short story: In late November 2013 I started itching slightly and feeling tired with minimal discomfort under my ribs. By early December my urine was getting darker and I knew something wasn’t right. A trip to my general practitioner for some liver function blood tests resulted in a trip to the ER for an ultrasound and CT scan that only showed some dilation of my bile ducts. The next week I saw a specialist who did more liver function blood tests and the results were still higher. By this time I was also getting noticeably jaundiced. The specialist admitted me to a local hospital (VCU/MCV) the following day for more testing. It was there that they did an MRI (MRCP) and delivered the bad news.

    My wife and I flew out the Mayo Clinic in Rochester, MN on December 22, 2013 to begin liver transplant evaluation – what we thought was my only shot. After about two weeks of testing we were told that resection was an option and the recommended course of action. We returned home for a week in early January, 2014, with plans to return to Mayo for surgery on January 17, 2014.

    On January 17, 2014, I had an operation to resect the left lobe of my liver, remove my gallbladder, and reroute the remainder of my common bile duct to my intestines.

    My tumor was fairly small and all margins were negative as were the gallbladder and all lymph nodes that were removed. Surgery was a SUCCESS, from my perspective.

    Immediately post op it was evident that I had a bile leak so they took me back to surgery the next morning to find and tie off a bile duct leak that was missed.

    I spent ten days in the hospital recovering from the double surgeries – far longer than I anticipated. I also had some surgical incision infection and they had to open the ends up to clean it out.

    I’ve been recovering at home since the first week in February and nursing two deep incision wounds left from the infection.

    I lost about 35 pounds between October and January (185 down to 150) and have just started putting a few back on.

    I’m expecting to go back to work mid March.

    I’ll post more details tomorrow as well as future plans.

    I’m looking forward to the support of everyone on this forum and hope my experience can be helpful to others in the future.

    -Matt

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