Does anyone here know of ANY patients who are or have taken Keytruda or Opdivo (pembrolizumab, nivolumab, MK3475), the anti-PD1 immunotherapy drugs?

I started Keytruda back in October 2015 and would like to network with others.



(13 replies, posted in Introductions!)

I'm taking Keytruda and not as part of a clinical trial.

You just need a doctor willing to prescribe it... that and be able to pay for it. Insurance won't cover it since it's not FDA approved.

A clinical trial is the way to go, if possible.

grsharp wrote:

Marions, we haven't asked why a positive biopsy is needed. I guess it just seemed normal that you would need to have a positive biopsy before starting treatment just in case it was not cholangio.

But is also makes sense that if you are 99% sure then why wait.

She had another attempt at a biopsy yesterday (the 1st one at Vanderbilt). The Dr said he took a needle sample thru the stent, a brushing and a sample with  forceps. We should hear something in 3-5 days.

I saw on this site that someone had good results using Keytruda. Does anyone know if you have to be in a clinical trial to get Keytruda now?


(309 replies, posted in Introductions!)

Had labs done today and my liver function test results are much better than they were a week ago. Some are perfectly normal now and others are moving rapidly in that direction. This is after taking steroids to put the breaks on my immune system. It appears that the Keytruda triggered an autoimmune hepatitis. I'll resume Keytruda in a few weeks. No need to fly out to Mayo Clinic tomorrow for an ERCP so I will be heading to the conference in Salt Lake City next week after all! Very happy!


(309 replies, posted in Introductions!)

Yes, I did Melinda - and I did have a minor (100F) temp the following day and that went away and morphed into a cold... I'm sure it's just a little virus. Labs this Wed will tell and I'll post results.

mbachini wrote:

Hi Matt,

Didn't you say you threw up during your MRI?? Maybe it is an infection, bug you are fighting??? Looking forward to repeat labs this week with all normal results!!! smile



(309 replies, posted in Introductions!)

Hi Julie!

Yes, this is a known possible reaction to the Keytruda. My doctor has seen it before.


Iowagirl wrote:

Matt.....Good to see your post.  There's the good news all the way through kind of neutral news to "What the heck" news in that post.   
  First.....CA19-9 continuing to go down....GREAT NEWS
  Second...No evidence of disease.....GREAT NEWS
  Third.....recurrence "might" still be there.....Still not bad....speculation that it is there at all
  Fourth....High Liver Labs....possible auto-immune response to the Keytruda.
      Question:   Has that been a known response for others taking Keytruda in the past?  It sounds logical.   The Prednisone certainly sounds like a logical attempt to dampen that response.   Hope that works and you can continue on once you get past this small hump.

Hope the labs look better next week and that you don't have to make the trip out to Mayo...and things can forge ahead with more Keytruda and continue to kill those beasties. 

Julie T.


(309 replies, posted in Introductions!)

This week I had an MRI to try to "see" and validate that the CA 19-9 drop since starting Keytruda is actually a good measure. Results are back and there is no evidence of disease. This is great news, but tempered a bit by the fact that my recurrence has only once been barely seen on a scan. It's just too small and in a crowded area of my peritoneal cavity so it's nearly impossible to see. I'm sure it's still there, at least a bit, based on my CA 19-9 still being above normal, but the Keytruda is working to bring that number down and, therefore, killing the cancer.

On another note, I had labs this week too and my liver function test results (ALT, Alk Phos, AST, and Billi) were alarmingly high. Higher than they have been since my resection two years ago. They spiked in less than 2 weeks. The previous labs were all normal. There's no sign of blockage anywhere so we suspect it's an auto-immune response to the Keytruda. I'm starting prednisone (steroid) today to put the breaks on my immune system and will skip my dose of Keytruda next week to see if that helps. I may go back out to Mayo Clinic for an ERCP to make certain that there's no blockage if the labs don't look like they're headed in the right direction when I get them checked again next Wednesday.


(70 replies, posted in Clinical Trials)

Let me know if you do start it - I'd love to know someone else taking it and would be happy to answer questions or compare notes. wink


(70 replies, posted in Clinical Trials)


Thanks so much for the update. Your long-lasting response to the treatment 27 months ago is still amazing.

If you've got a compatible mutation, why you wouldn't start the pembrolizumab/Keytruda immediately? 



(309 replies, posted in Introductions!)

It is perfect timing, for me. I  couldn't be happier!

Lainy wrote:

Matt this is amazing! It is like a miracle and may the miracle continue!


(309 replies, posted in Introductions!)

Time to share still more good news.

Today I just got the latest CA 19-9 results and it's down to 151 from 160 three weeks ago. The Keytruda is still working.

I've now had a total of five infusions and will continue having them every three weeks until... Still no side effects to speak of too.

Here's my history showing the continued drop:


(309 replies, posted in Introductions!)

Time to share even more good news.

Today I just got the latest CA 19-9 results and it's down to 160. Previously it was 411.

There is no doubt now that the Keytruda is working!

I've now had a total of four infusions and will continue having them every three weeks until...

Zero side effects to speak of too.

Here's my history showing the continued drop:


(9 replies, posted in Chemotherapy)

Just for those searching the forum, I'll add that I was able to get my oncologist to prescribe Keytruda for me starting in November 2015. It's still not FDA approved for Cholangiocarcinoma so my insurance (Aetna) would not pay for it. I was, however, able to get Merck to give me the drug for free under their Patient Assistance Program ( I have the MLH1 gene mutation in my tumor and after just two infusions, my CA 19-9 is down 171% so it appears to be working for me.


(309 replies, posted in Introductions!)

Time to share more good news.

Today I just got the latest CA 19-9 results and it's down to 411. Previously it was 1,570.

The Keytruda appears to be working and I hope the trend continues. The drop was after just two infusions. I've now had a total of three and will continue having them every three weeks until...

Here's my history showing the nice big drop:


(309 replies, posted in Introductions!)

A little update.

I had CT scans (chest, abdomen, and pelvis) on Nov 20, 2015 and got the results today. Everything looks fine. There is no evidence of disease. It is, however, hard to "see" in the peritoneal cavity. I'll have an MRI in Jan 2016 for the next check.

I also had my third infusion of Keytruda today. If I hadn't mentioned it yet, Merck has agreed to provide me with free Keytruda since my insurance company won't cover the $12,000 cost every three weeks. Thank you Merck!

I've been struggling a bit with malabsorption and fat digestion for the past few weeks. My doctor gave me a prescription for Creon, a pancreatic enzyme replacement, but I won't take it unless I really have to.

I have much to be thankful for. I'm coming up on my two year anniversary of living with Cholangiocarcinoma and feel extremely fortunate to still be here.

Happy Thanksgiving!



(309 replies, posted in Introductions!)

There were some concerns that I might have Lynch Syndrome (HNPCC) since my tumor has the MLH1 mutation and we have a pretty frequent family history of GI cancer so I had some additional genetic testing done and it turns out that I do not have Lynch Syndrome.

Good news for a couple of reasons.

1) My children won't be more likely to develop early GI cancers.
2) The Keytruda that I'm taking has shown to be much less effective in people with Lynch Syndrome


Ref: … tal_cancer


(309 replies, posted in Introductions!)

Just a brief update "for the record".

I had my second infusion of Keytruda on 11/4/15. I'm still feeling zero side effects from the drug, thankfully. I feel well.

Insurance (Aetna) denied claims and related appeals to pay for the Keytruda. The great news is that Merck, the manufacturer, has agreed to provide the drug for FREE going forward. I was not looking forward to shelling out $12,000 every three weeks.

My CA 19-9 continues to climb even though I've started the Keytruda. My oncologist assures me that I shouldn't worry about it, but it's hard not to. I've updated my CA 19-9 history graph and attached it to this post.

Scans are being scheduled as a new baseline for use in tracking how well the Keytruda works for me.

I've got several trips planned. NYC for Thanksgiving and the parade with the family. Puerto Rico in January with my 80 year old father and two brothers, Salt Lake City for the Foundation's annual conference, and Turks & Caicos with the family for Spring break in March.



(70 replies, posted in Clinical Trials)

Fantastic news Melinda! I'm so happy for you and thank you so much for blazing the trail for the rest of us and those to come.


(7 replies, posted in Members' Cafe)

A few of us with CCA who live in the Richmond VA area had lunch today. It was great to get together and share our journeys!


(309 replies, posted in Introductions!)

Unfortunately, the downward trend did not continue. My CA 19-9 level from a week ago (10/14/2015) was up, to 1114.

Now that I've started Keytruda, hopefully it'll work and the CA 19-9 will start coming down over the next few months.

Hi Tina, I am being tested for Lynch too. I was diagnosed with Perihilar Cholangiocarcinoma almost two years ago at the age of 47. I should have some genetic results on Lynch soon and will post them.


(9 replies, posted in Introductions!)

Frank, welcome. I want to encourage you to get your wife's tumors genetically tested via FoundationOne or similar company so that you can explore clinical trials for new targeted therapies. Her doctor should be able to arrange for that. Best of luck to you both!   -Matt


(309 replies, posted in Introductions!)

Infusion was this past Wednesday and it's Sunday now. Still no noticeable side effects from the Keytruda. I should have my latest CA 19-9 results (from before I started Keytruda) in a few days and will update my chart and see if there's a downward trend without any therapy. Thankfully, we have the financial means to pay for the Keytruda, if necessary, without a GoFundMe or similar campaign. That doesn't mean I won't fight insurance and Merck for coverage and/or a discount.  smile


(309 replies, posted in Introductions!)

Posting a graph of my CA 19-9 history. Starting on the left, at diagnosis in December 2013, then drops to normal after resection in January 2014, then climbs during recurrence in January 2015 and varies through chemo in March/April 2015 and again through IMRT radiation in June/July 2015 and reaches all time high in early September 2015. Starts dropping without treatment in late September 2015. Will see and track what happens with the Keytruda treatment starting mid October 2015.


(309 replies, posted in Introductions!)

Yesterday, 10/14/2015, I received the first of what I hope to be many Keytruda infusions. We're using Keytruda "off-label" as it's not FDA approved for Cholangiocarcinoma in the US at the moment.

I'll be doing a 30 minute infusion of 2mg of Keytruda per Kg of body weight (170mg in my case) once every three weeks.

It's 24 hours after my infusion as I write this and I feel no side effects at all.

We will monitor the effectiveness of the treatment with labs prior to each infusion and occasional scans. Right now the only evidence of disease I have is my elevated CA 19-9, so hopefully that will drop. The average time for measurable response, based on the NEJM article I've read, is 6 weeks.

Insurance (Aetna) denied the first attempt to pay for the drug, which costs about $12,000 per treatment. We will continue to fight the insurance company and seek other avenues to cover the cost...

Life is good, never better, in fact!  smile


(309 replies, posted in Introductions!)

Thanks for the reply Nancy! I'd bet your husband's labs are elevated just from the dirty stent... let's hope so. An 8 year survivor is one of the longest I've heard of - congratulations! I hope that I make that milestone too!  smile

Nancypkeen wrote:

Hi Matt,

So excited to hear of your decision to try Keytruda.  I look forward to seeing your positive posts on how it is working.  My husband Ron is in a similar situation as you.  His CT scan shows no evidence of a recurring cancer but his blood work numbers are elevated.  His CA 199 is 110 but his Alkaline Phosphatase is over 500.  Billirubin is hovering around 2.2.

He is now going to his oncologist on a monthly basis for blood work.  He is very blessed to be an 8 year survivor.  He has a permanent stent which now appears to be causing some problems with a slight blockage.  Next step will be to get it cleaned out.

We live in Midlothian, VA so we are near you.  Most of his cancer treatment has been at Sloan Kettering with follow-up care at Virginia Cancer Institute.

Sincere best wishes to get rid of this cancer and have many wonderful years with your family.