(268 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!



(268 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: https://en.wikipedia.org/wiki/Hereditar … tal_cancer


(268 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.




(65 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!



(268 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.


(8 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


(268 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


(268 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.



(268 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


(268 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.



(268 replies, posted in Introductions!)

I'd love to meet for lunch - pick a day and place and let me know (mattreidy at google . com) and I'll be there.

Sherri wrote:

Susan and I want to meet with you for lunch one day to tell you all about our roller coaster rides. I'm at MD Anderson now and just had my 1st promising scan. My ca-19 had risen to 7227 but my 1st 6 cycle that they put together brought it down to 2398.  I'm still celebrating.

Susan can't meet until around Oct 22, has family things going on.  Check your calendar and let's have lunch.


(268 replies, posted in Introductions!)

I just met with my local oncologist in Richmond and have some pretty fantastic news.

He shared the New England Journal of Medicine article "PD-1 Blockade in Tumors with Mismatch-Repair Deficiency" with me and explained that since my FoundationOne genetic testing shows my cancer has the MLH1 defect, he's willing to prescribe Pembrolizumab (aka Keytruda, aka Opdivo, aka MK-3475) for me.

So, instead of at best buying a little time with more gem/cis, I'm starting on Pembrolizumab in two weeks. Although not FDA approved for Cholangiocarcinoma in the US, we're going to try to get insurance to cover the cost, otherwise I will pay out of pocket and am extremely thankful I have the financial means to do so - the cost is nearly $10,000 per month.


Reference:  http://www.nejm.org/doi/full/10.1056/NEJMoa1500596


(268 replies, posted in Introductions!)

Results from my check-up at Mayo this week are mixed. I'm about two months post-radiation treatments.

The good news is that there is "no measurable disease". i.e. There are no visible tumors or other visible signs of cancer, which is fantastic.

The bad news is that the cancer marker in my blood is at an all time high (just over 1,000) which leads us to believe that the cancer is there but just not visible. There is some "thickening" of some bile ducts in what remains of my liver which may or may not be cancer. I opted not to have an ERCP to look and do a biopsy because either way, I'm planning to start chemo again locally in Richmond and continue to monitor things.

All of my other labs are completely normal and I feel just fine.

Are there others who did radiation and then had elevated CA 19-9 numbers and/or thickening of the bile ducts?  I'm hopeful that both are just a result of the irritation from the radiation.


(268 replies, posted in Introductions!)

Lainy wrote:

LOVE< LOVE <LOVE it!!! Great Picture as well. Thanx for letting us know.

Lainy, Julie even gave me a special hug just from you!  xo


(268 replies, posted in Introductions!)

I'm happy to have met my second fellow CCA survivor, in addition to myself.

Julie T. (Iowagirl) and I had a chance to meet while we were both at Mayo Clinic this week.

It was great to finally put a face with a name and meet in person to share stories and give each other encouragement!



(65 replies, posted in Clinical Trials)

How absolutely fantastic!!! Every bit of it. Thank you for sharing!!!  xo


(268 replies, posted in Introductions!)

Hi all,

I've been remiss in not posting for a while... I apologize for that.

I decided to go with the IMRT radiation vs Proton Beam for various reasons.

I started IMRT along with daily chemo (oral Capecitabine aka Xeloda aka 5-FU) at the Mayo Clinic in Rochester back on 6/9/15. The plan is for me to complete 28 doses of radiation which should put me out to mid July before being all done. I was very direct with my radiation oncologist and asked her to confirm that this was a curative plan, not palliative. She assured me that it is. In fact, there's nothing to be seen on scans nor any symptoms to be treating, so it's definitely not palliative, she said to me.

I struggled with nausea the first week until I got down a routine of taking the right antiemetics that work for me. It's better now. I do find that I'm ready for a daily nap mid-day and my appetite is lacking.

I'm staying at the American Cancer Society's Hope Lodge here in Rochester and it's an easy 2 block walk to where I receive treatment, at least in June and July!

Most of the people here at the Hope Lodge are "in" for prostate cancer treatment. When I explain what I have and have done/am doing they all seem a bit shocked. Don't get me wrong, there are some here with brain tumors and other things even worse than CCA, but nobody here has heard of it before either, sadly.

I drove the 1,200+ miles from Richmond, VA to Rochester, MN so that I'd have a car since I'm here for so long. I have to grocery shop and cook for myself while here so transportation is a must.

I'm growing tired of "treatment", if you know what I mean. Quality of life the past 6 months has been lacking. First it was chemo, then surgery, now radiation plus chemo. The original gem/cis chemo worked so well on me that they are recommending that I do it again after the IMRT for "a good 5 rounds". That would put me well into 2016... I'm NOT looking forward to that... My deepest fear is that I'm doing all this for naught and no matter what, the cancer will return, and I will have wasted 6-12 months of feeling good and enjoying life. I'm sure we all fear that to some degree.

If you at Mayo before the end of July, give me a shout!



(268 replies, posted in Introductions!)

Hello everyone,

I'm back home, recovering from surgery on 5/7/15 at Mayo Clinic in Rochester, MN.

Once again my surgeon was David Nagorney.

The plan was to go into my abdomen laparoscopically and look around to confirm there were no signs of metastasis that may have not shown on CT/MRI imaging. If all looked good, Dr. Nagorney would reopen my peritoneal cavity, on the same incision as my resection in Jan 2014, and assess and attempt to remove any remnants of the ~1.5cm tumor that was originally spotted in an MRI scan in Jan 2015 and was gone according to imaging after 5 infusions of gem/cis.

The outcome was a mixture of news. On the bright side, there was no sign of metastasis and Dr. Nagorney was willing/able to open me up, reusing about 2/3 of the incision that was used for my resection, to look for remnants of the small tumor and remove if possible. On the not so bright side, the tumor is too close to a portal vein that feeds the portion of my bowel where my bile duct was reconnected during my original resection. The bile duct is apparently too fragile to try to reroute again without long term complications.

Surgery was on Thursday morning and I was discharged on Sunday morning. I flew home to VA the next day.

About a week into my recovery at home things were progressing nicely until one morning I took a shower and rubbed off a bit of scab on my incision and it started oozing, rather quickly, a bloody pink fluid, similar in look to what was collecting in the surgical drain post-op. I could largely stop the flow with a few layers of tissue and pressure but ended up going to the ER for the day where they did a CT scan and determined that it would be best to open the incision, drain and clean the wound, and let me proceed to pack it daily until healed. Overall, I guess that was good news. No leak in my peritoneal cavity, no infection in there either, just a localized collection of fluid and slight infection. I had similar issues with the first resection surgery when I ended up with two major wounds to pack for a few months.

The tumor remains in place while I recover from surgery and consider some options.

I'm considering IMRT (intensity modulated radiation therapy) at Mayo Clinic in MN, consulting with MD Anderson on Proton Beam Therapy, and longer-term looking at an immunotherapy clinical trial targeted at one of the mutations identified in my FoundationOne report.

I'll be at Mayo again for IMRT related consulting, scans, and simulation work, 5/26-5/27/15 (next week).



(6 replies, posted in Introductions!)

Welcome to the site and I'm sorry to hear about your father in law.

The abdominal fluid buildup is called ascites and I believe that it is an advanced symptom of the cancer metastasis and it's overall impact on the body. I believe the only relief for it is drainage (peritoneocentesis), which is temporary.

Has he gotten second and/or third opinions on treatment?

I'd highly recommend it, if not. Especially from one of the leading Cholangiocarcinoma institutions like Mayo Clinic (MN), Johns Hopkins (MD), or MD Anderson (TX)...

I'm sure others will chime in to welcome and provider their experience. Good luck and keep us posted!



(39 replies, posted in General Discussion)

dhometexas wrote:

First- thank you to all your your support, guidance, and recommendations over the past months. Tomorrow, we have a visit with the surgical oncologist that removed the Klatskin tumor 2 weeks ago and would like your advice on questions to ask. So far we have:

1. What are the results of the biopsy and the margins?

Ask for the "official" staging based on their findings.

2. At what point would adjuvant treatment be recommended? Chemo, radiation, hormone, biological?

Request to have a tumor sample sent to FoundationOne for genetic testing a future possible targeted therapy.

3. How long does it take the liver to regenerate?

The liver doesn't actually "grow back" - what's left just grows a bit and compensates for what was resected. Usually 3-6 weeks but you won't even be aware of it (I wasn't).

4. What are the chances of recurrence?

Good luck getting an answer to this other than "high". I don't think you'll pin a provider down on this.

5. What diet should Chris be on?

Be sure it's protein-rich during recovery.

6. What should his range of activity be?

Good question - Other than no driving or picking up heavy objects for a few weeks, I had no restrictions.

7. Should PT or OT be recommended?

Usually not necessary.

Is there anything else that we should ask?

Ask about frequency of follow-up scans and labs. Every 3-4 months for the first year is normal. Try getting MRIs vs CTs of the abdomen if you can to avoid the xrays associated with CTs.

Ask about what to look for complication-wise, such as bile or intestinal blockage from scar tissue that forms post-op. I had none of this, but many do.



(268 replies, posted in Introductions!)

Thank you all so very much for the thoughts, prayers, and support.

I received the BEST news I could have hoped for at Mayo today - there is NO SIGN of the 2cm tumor I had back in January. Apparently the chemo (gem/cis) was very effective in my case. The doctors at Mayo were quite surprised at how effective the gem/cis was... 

My CA 19-9 dropped to 120, not "normal" but on the way there. CA 19-9 has always been a good indicator for me.

Dr. Nagorney, my surgeon at Mayo, has agreed to do surgery on May 7th to verify the scan results and if he sees any remnants of the tumor, remove it. I'm expecting a 2-3 day stay in the hospital.

I'm heading home to VA tomorrow (Fri) and will come back to MN next Wed for the surgery on Thu.

:: happy dance ::



Welcome - I'm sorry you're here but glad you found us! It sounds like you've got a solid plan and imagine that you've been as impressed with Mayo in Rochester as I have been.

Have you been given an estimate on the size of your tumor?

Did they test your blood for any cancer markers such as CA 19-9? If so, what's it looking like? If not, ask them to...

I'm in Rochester this week for testing - where are you doing your chemo? Locally in Arlington or at Mayo in Rochester?

Feel free to reach out any time - having others to talk to can be really helpful. If you're on Facebook, feel free to "Friend" me.

-Matt Reidy


(268 replies, posted in Introductions!)

A little update for the record...

I had my 5th infusion of chemo (Gem/Cis) on Wednesday, 4/15/15, and by Friday I was feeling very poorly (no energy and lots of diarrhea). My extended family was gathering in NY for my father's 80th birthday party so I drove from VA to NY for the weekend and felt worse and worse all weekend.

After getting home to VA Sunday night I pretty much didn't get out of bed for 48 hours. I tried to stay hydrated but wasn't eating much at all.

Infusion #6 was scheduled yesterday, Wednesday, 4/22/15. I went in and had labs which all came back normal even though I still wasn't feeling well at all. I decided that 5 infusions was enough. Either it's helped by now or it's not going to.

My goal with chemo was two-fold; 1) "check the box" for attempting the "standard of care" so that I can join clinical trials that require that and 2) prove that I can keep the one small tumor I have in my peritoneal cavity at bay with no further metastasis so that my surgeon is willing to operate and remove it.

I've been doing the chemo locally in VA and will be heading back to the Mayo Clinic next week (week of 4/27/15) to have a chest CT and abdominal MRI to see if the chemo has prevented any further metastasis. If that's the case, I will also be meeting with my surgeon to discuss the possibility of operating to remove the tumor. It's near the head/neck of my pancreas and there is a possibility that a Whipple might be required. I sure hope not...