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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
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 23, 2017 at 8:20 pm in reply to: Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients? #91520Alikemal wrote:why does merch give the drug at no charge ?February 20, 2017 at 2:31 pm in reply to: Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients? #91518
Generally, Merck gives the drug to those in the US who ask for it at no charge. Nobody really knows how long is long enough – yet. I plan to be on it for about 18 months.Daisy wrote:If patients are receiving this an off label use? What is everyone paying for this drug? Do the pharmaceutical companies just gives to the patients or do the patients pay out of pocket? Also how long does one need to stay on this?February 20, 2017 at 3:01 am in reply to: Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients? #91515
SIde effects are rare but can be serious. Generally autoimmune problems. Minor issues can be resolved with steroids but serious issues will require stopping treatment.
I’ve experienced some fatigue, but nothing serious and certainly nothing at all like chemo or radiation.
Take a look here for more info: https://www.keytruda.com/non-small-cell-lung-cancer/keytruda-side-effects/Daisy wrote:Matt,
What are the side effects of Keytruda if any? Any how long will you be on the treatment!February 16, 2017 at 11:04 pm in reply to: Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients? #91513
I take Keytruda – it’s a 30 minute infusion, once every three weeks. I was Stage IV Perihilar CC when I started and have been NED for over a year now.
Thinking of you while at the 2017 Annual Conference this year Chuck. Your caring, help, and knowledge captured in this message board continues to be critically important and we miss you!
On another note, I manage a FaceBook group that focuses on Immunotherapy for Cholangiocarcinoma. Please join if you would like.
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.
Welcome! You asked about the best places to go. My personal favorites are MD Anderson, Mayo, MSK, Hopkins, and Mass Gen.
Have you gotten genetic results back yet?
There is hope! See my story here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
Please be sure to get genetic testing done on your husband’s tumor. That is the key to potential new treatments. There is still hope. See my story here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
Welcome! There is hope – see my story at http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
Welcome Christina. I am a fellow patient, diagnosed in December 2013 and still here. There is hope. Most people start out with “standard” chemotherapy with a goal of surgical resection. It is extremely important to seek care by a team experienced with cholangiocarcinoma and to keep pushing against the odds. Seek as many opinions as you can and don’t take no for an answer.
You can see my story here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
-MattJanuary 11, 2017 at 9:46 pm in reply to: Cholangiocarcinoma status post Whipple (extra-hepatic duct) #93784
Are you doing daily treatments 5 days a week? I did that about 18 months ago for 6 weeks. Side effects for me were not severe. Fatigue, lack of appetite, etc.
The effects are cumulative so you can expect to feel worse until after treatments stop for a few weeks.
I just completed Keytruda infusion #20 today (Jan 11, 2017). All is well. Looking forward to the conference this year! -Matt