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I’ve finished my 17th Keytruda infusion this week and continue to be “NED”, as we say.
Here’s a chart showing my CA 19-9 cancer marker history since diagnosis Dec 2013 thru my last infusion on 11/9/2016.
As a reminder, I started Keytruda in Oct 2015, prior to that I had IMRT radiation, prior to that I did a bit of gem/cis chemo, and prior to that I had a resection.
You can clearly see the effect the original resection had for about a year, then recurrence, then a roller coaster with chemo, another surgery, and radiation, then skyrocketing prior to Keytruda.
I am “the luckiest unlucky guy I know”…
Just a suggestion that “Hopeless” start a thread for their introduction, comments, updates, and advice… I’d rather not mix it in with mine Thanks!
Quick update. I’ve now completed 16 infusions of Keytruda and had scans in mid September. No evidence of disease! CA 19-9 is between 9 and 12 and scans are clear.
I will continue to take the Keytruda until Mar/Apr 2017 which will mark one year of NED.
Life has never been better. I will be speaking at the CCF annual meeting in Feb 2017 to share my story to offer hope to others.
TIme for a little update.
I’ve now had a total of 12 Keytruda infusions and my CA 19-9 remains in the normal range. I’ll repeat that CA 19-9 has been a spot-on marker for me over the past 2.5+ years so until results from my next scans in September 2016, I am still NED.
I’ve got all the “normal” issues for someone who’s had multiple abdominal surgeries, liver resection, gall bladder removal, chemo, radiation, etc. Adhesions, twinges, messed up digestion and bowels, but I’m just happy to be here and accept all that as my not-so-new normal these days, I continue to need to take Creon (pancreatic enzymes) with food because my pancreatic exocrine system was destroyed a year ago when I underwent a failed attempt at curative IMRT radiation for my recurrence.
The Keytruda initially had no side effects, but after about six months, I find I’m fatigued constantly. It doesn’t go away with sleep or rest. I get plenty of sleep, thanks to my wife, but it’s always there. I try to ignore it as best I can.
I’ve gotten back out on the water for some water sports like skiing, wake surfing, and windsurfing. Things I wasn’t sure I’d ever get back to. I’m happy to say that my abdomen was not a problem.
Here’s a little pic of my youngest, Dylan, and I along with a chart of my CA 19-9 values since starting Keytruda in Oct 2015.
My best to all reading this!
So fabulous! Congratulations! You give me (us) hope that one day, we too may be able to make such a declaration…!
I did IMRT with 5-FU (oral) at Mayo Clinic in MN for 8 weeks in 2015. Unfortunately it didn’t eliminate my peritoneal recurrence. It did, however, damage my pancreas. I now need to take Creon with meals for proper digestion. We did unusually high doses of IMRT in an attempt to cure vs. palliate.
Thank you all for the well wishes!
This update is a bit late…
LFTs were high on a Wed as stated previously. I went in the following Fri and AST/ALT were down a bit but Alk Phos was up a bit. Feeling a bit better about those results, we left for a week of vacation as planned.
After getting home, 8 days later, I went in for labs Mon morning and everything was back to normal without any intervention.
I’m beginning to think the spikes aren’t the Keytruda but perhaps linked to drinking alcohol in moderation. I was never a heavy drinker, maybe 4 drinks a month… after diagnosis I stopped almost completely, but on occasion I’ll have a drink and these spikes seem to happen after that. Maybe a coincidence, maybe not. I’ve now stopped ALL alcohol and will see… I won’t miss it a bit.
I’m scheduled for Keytruda #10 this Wed.
Went in for Keytruda infusion #10 on May 25, 2016 and had labs before the infusion, as usual. My liver function tests are high
Alk Phos – 167
ALT – 108
AST – 145
This is the second time this has happened on Keytruda. The first time was in January, after about 3 infusions.
This time, the numbers aren’t as bad as they were in January, but still not good. It indicates that the Keytruda is likely causing my immune system to attack not just the cancer, but my liver too.
Skipping treatment today and will come back for labs in two days to see if they are getting better or worse. If they are worse, I will start prednisone (steroids) again to knock back my immune system for a bit.April 28, 2016 at 4:55 pm in reply to: New to site – 2.5 years living with Cholangiocarcinoma #92185
Welcome Annie – I’m sorry to have you in “the club” but so glad you’ve introduced yourself and shared your story. This forum and the foundation are a great source of information and support, as you said. I look forward to meeting you in person at the next conference! -Matt
No side effects to speak of… amazing!
After 8 infusions of Keytruda, I had abdominal and pelvic MRIs and a chest CT scan last week. Results show no evidence of disease! My CA 19-9 is also at another all-time low of 8. I plan to continue the Keytruda for at least one year, thru Oct 2016. One very happy camper here.April 6, 2016 at 5:55 pm in reply to: Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients? #91507
You are correct that it is not US FDA approved for CCA. It likely never will be due to the cost involved and the lack of associated revenue.
It is, however, able to be prescribed “off-label” by any oncologist in the US. The catch is that Insurance will likely not cover the cost in that situation.
I did not qualify for any trials so I’m taking it off-label.March 17, 2016 at 3:27 pm in reply to: Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475) Patients? #91505
I have been taking Keytruda since October 2015 (6 infusions total so far) with great success. It took about 4-6 weeks to “kick in” to the point where I could see a drop in my CA 19-9 level.
You can see my whole story, including more details on the Keytruda experience here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
I think it’s too early for your wife to call it quits just yet. I hope the review board agrees!
Best of luck and keep us posted please.
I’ve the most fantastic news to share…
I got my CA 19-9 results from this week just now and it’s at 15. NORMAL
Now I know CA 19-9 is not always a good marker for everyone, but over the past 2+ years it’s been a “spot on” marker, so I am now officially “cancer free”. There is “NED” on both scans and blood markers!
I’m in shock…
CA 19-9 spiked at over 1,500 just 4 months ago and started coming down after just two infusions of Keytruda. I took a nearly 8 week break between infusion #5 and #6 and CA 19-9 continued to go down from 151 to 15 over that time period. The drug clearly has long-lasting impact.