Discussion Board Forums Introductions! My Introduction

Viewing 15 posts - 1 through 15 (of 405 total)
  • Author
    Posts
  • #97705
    mattreidy
    Participant

    Here it is, October 26, 2018. Nearly 5 years after diagnosis in December of 2013, and I’m still alive and cancer free.

    I wanted to update my thread and let you know that I consider myself cured. A word that becomes taboo once you’ve had cancer, it seems. No doctor or other healthcare professional dare utter that word.  Survivors and providers seem to prefer the terms “remission” and “NED (no evidence of disease)” I assume for reasons related to liability and superstition.

    I’ve been off treatment (Keytruda) for nearly 2 years and cancer free for nearly 3 years. It’s only in the past 6 months that I boldy use that “cured” word 😉

    I continue to have a chest CT and abdominal MRI every 3 to 4 months and since I like data and CA 19-9 is a solid indicator of disease for me, I go in for monthly labs.

    Life is good.

    I struggle with the aftermath of my ordeal, but I’m not complaining. I only document them here to try to help others. Issues include fatigue, bouts of ascending cholangitis, pancreatic digestive insufficiency, borderline pre-diabetes, and SIBO (small intestine bacterial overgrowth). Pancreatic issues result from aggressive radiation on my recurrence that damaged my pancreas. All the rest are related to the common bile duct reconstruction during my initial resection in January 2014 – Scar tissue has formed at the interface of my bowel and liver where the bile drains and it “gunks” up on occasion, allowing gut bacteria to migrate up into the biliary tree and cause serious infection. I’ve had multiple ER visits with multi-day hospital stays for IV antibiotic administration resulting from this. Once, I even went septic from it. The SIBO is related as well – there’s basically a section of my small intestine now  that’s a “dead end”. It fills with partially digested food and then it just sits there and festers, growing gut bacteria like crazy. I’m struggling to find the right long-term treatment for this. Oral antibiotics are the way to keep it under control but they have their own bag of side effects.

    My best to everyone reading this!  -Matt

    #80497
    mbachini
    Moderator

    Thanks Matt for sharing and inspiring!! You know how I feel about ya!!!

    #80506
    gavin
    Moderator

    Hi Matt,

    Thanks for that, what brilliant news! And yes, it is far too long as you say, and if Lainy was here right now I am pretty sure she would shout at you and give you a telling off! What great news though and thanks loads for sharing that with us all.

    My best to you,

    Gavin

    #80507
    spokanemom
    Participant

    Matt,
    Thank you so much for sharing!! This is awesome news and gives me hope.
    Best Wishes,
    Victoria

    #80508
    hercules
    Moderator

    Matt, good to hear all is well, hope you are living life to it’s fullest, Pat

    #80509
    middlesister1
    Moderator

    Matt-

    Congratulations and thank you for sharing hope! Also, the info on the Keytruda I’m sure will be helpful to many.

    Take care,
    Catherine

    #80511
    darla
    Participant

    Matt,

    Thanks for posting this great update. Glad you are still doing well and it is so encouraging for others dealing with this disease. Keep the good news coming. :)

    Hugs,
    Darla

    #80510
    debnorcal
    Moderator

    Matt,

    It is so nice to hear from you, and even better to hear your fantastic update! Mike and I are so very happy for you. We wish you much happiness and continued wonderful health!!

    Debbie

    #80512
    bglass
    Moderator

    Matt,

    Thank you for sharing this wonderful news.

    Your story is a reminder that new and better treatment options for CCA are now out there or in the works, hopefully brightening the prognosis for all of us.

    Please continue to keep us posted.

    Regards, Mary

    #80513
    mattreidy
    Participant

    It’s been far too long since I’ve posted an update!

    It’s now September 2017, almost 4 years (45 months) since my diagnosis in December 2013, and I’m still here! I never thought that would be possible for the longest time.

    I started Keytruda in October 2015 and continued on it once every three weeks for about 18 months, finishing in May of 2017. I stopped because as of then I was NED (no cancer) for over a year.

    I remain cancer free now. Scans are clear and my CA 19-9 level was 18 as of September 12, 2017. CA 19-9 happens to be an excellent marker for me and I’m thankful for that.

    Why did I try Keytruda and why did it work for me? Because my genetic testing from FoundationOne showed that my cancer had the MLH1 mutation which is one of several Mismatch Repair (MMR) deficit types of mutation. Those tend to be good indicators that Keytruda will work.

    Keytruda is now FDA approved for cancers with MMR deficits but when I started it, it was not. I took it off-label and not as part of a clinical trial. Merck gave me the drug for free the entire time.

    Life has never been better and I consider myself CURED. Time will tell…

    Please don’t hesitate to contact me here, via the “Cholangiocarcinoma Immunotherapy” Facebook group, or via email at mattreidy@gmail.com

    :)

    #80527
    middlesister1
    Moderator

    Matt-

    Keep the great new coming!!!! You give hope to other too.

    Take care,
    Catherine

    #80526
    mattreidy
    Participant

    On another note, I manage a FaceBook group that focuses on Immunotherapy for Cholangiocarcinoma. Please join if you would like.
    https://www.facebook.com/groups/753847751426566/

    #80525
    mattreidy
    Participant

    Hi Everyone,

    Time for another update… I continue to be NED (no evidence of disease). Scans in January 2017 show no cancer and my CA 19-9 marker remains normal.

    I am continuing to take Keytruda (pembrolizumab) off-label, once every three weeks. I’m not sure when I will stop.

    Here are some updated charts showing my history too.

    -Matt

    History.png

    Pembro.png

    #80524
    debnorcal
    Moderator

    Wonderful news!

    #80523
    lainy
    Participant

    Oh, Matt, how awesome and wonderful! I am looking forward to meeting you in Salt Lake City! What a great story you have and may it continue until you are old and gray like me! LOL

Viewing 15 posts - 1 through 15 (of 405 total)
  • You must be logged in to reply to this topic.