October 26, 2018 at 10:27 am #97705
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! -MattSeptember 20, 2017 at 7:33 pm #80497mbachiniModerator
Thanks Matt for sharing and inspiring!! You know how I feel about ya!!!September 18, 2017 at 5:19 pm #80506gavinModerator
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,
GavinSeptember 18, 2017 at 3:21 pm #80507spokanemomParticipant
Thank you so much for sharing!! This is awesome news and gives me hope.
VictoriaSeptember 18, 2017 at 8:56 am #80508herculesModerator
Matt, good to hear all is well, hope you are living life to it’s fullest, PatSeptember 17, 2017 at 12:00 pm #80509middlesister1Moderator
Congratulations and thank you for sharing hope! Also, the info on the Keytruda I’m sure will be helpful to many.
CatherineSeptember 16, 2017 at 3:05 pm #80511darlaParticipant
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.
DarlaSeptember 16, 2017 at 5:43 am #80510debnorcalModerator
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!!
DebbieSeptember 16, 2017 at 1:07 am #80512bglassModerator
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, MarySeptember 15, 2017 at 8:50 pm #80513
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 firstname.lastname@example.orgFebruary 3, 2017 at 11:21 am #80527middlesister1Moderator
Keep the great new coming!!!! You give hope to other too.
CatherineFebruary 2, 2017 at 4:01 pm #80526
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/February 2, 2017 at 3:58 pm #80525
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.
-MattJanuary 13, 2017 at 2:57 am #80524debnorcalModerator
Wonderful news!January 12, 2017 at 1:45 pm #80523lainyParticipant
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
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