(149 replies, posted in Introductions!)

Thanks Marion and Julie. Julie, I was "out" for the port installation. I made a point of being adamant about that. Not out enough to need breathing help, but I remember NOTHING.

After a 6 hour surgery to fix a bile leak 18 hours after my original 8 hour resection surgery I woke up on the table after the took my breathing tube out. That was because they were manipulating me to take xrays trying to find a missing needle (!) and it hurt like heck!

That story scares me and every anesthesiologist I tell it to so I make them hit me hard with fentanyl and propofol  when they're doing these "minor" procedures... ha

Nonetheless, I can see what a difficult time they had with the port and it's still tender a week later. I just didn't have to be aware of it at the time and I'm thankful for that.


(149 replies, posted in Introductions!)

Hi everyone,

I started my first round of Gem/Cis chemo last week and will have my second infusion tomorrow.

The installation of the port in my chest was apparently more difficult than normal. It took two hours and I've got about ten holes in my chest and neck where they attempted to thread the catheter into my vein along with a bunch of bruising to my neck and chest.

As for the chemo itself, it's been pretty uneventful. My only real complaint is that I'm foggy and sleepy most of the time. I'm not sure if it's the antiemetics I'm on or just my body's reaction to the chemo itself at this point.

I did want to ask: Do most people continue to take antiemetics all the time while doing chemo or only for a few days right after an infusion?

I'm sorry for what probably sounds like a bit of complaining... I'm finding myself using this thread as my blog in hope that it helps others in the future.

On another note, I found this interesting:  http://7thspace.com/headlines/504446/su … cases.html


(47 replies, posted in Clinical Trials)

F A N T A S T I C  !!!

Congratulations Melinda !  smile smile smile


(149 replies, posted in Introductions!)

Thanks for taking the time to read through my journey and replying Derin. I'm so happy that  you've kept the beast at bay! I'll be rooting for that to continue for another 40 years.

I find it interesting that  you had radiation in addition to chemo in the adjuvant setting. I'll have to ask if that's something to consider at this point in my treatment. Thus far nobody has mentioned radiation.

I'm scheduled to get my port tomorrow morning at 6:30am and then start the chemo the next morning. Hopefully my experience will be as smooth as it sounds like yours was!

No unusual asbestos exposure for me... I'm thinking it was all the hot dogs I used to eat.   wink


(149 replies, posted in Introductions!)

First, I want to thank you all for the continued support.

Insurance would not pay for a PET scan. They consider it experiential for CCA. So in place of that I had a chest CT w contrast and it came back clear (yay!). Tomorrow I will have a bone scan and I don't expect anything to show up there.

Next Wed I'm scheduled to have my port installed and then start Gem/Cis the next day.  Two weeks on, one week off per cycle. Standard stuff, I think.

I'm hopeful that I can do 3 rounds and then just have surgery to remove this new tumor.

Time will tell!

-Matt. xo


(13 replies, posted in Introductions!)

We will be routing for you Kathy. I hope it's all just a false alarm.


(13 replies, posted in Introductions!)

Hi Kathy,

My understanding is that CA 19-9 is not 100% reliable but anything over 20 could be an indication that something bad is happening and should be followed up on.

My CA 19-9 was over 400 prior to tumor resection and then hovered around 10 for a year but shot back up to 360 and they found a new 1.5cm tumor causing that. I'm about to start chemo for the recurrence .

I'd recommend you get your oncologist to order a scan asap.



(2 replies, posted in Chemotherapy)

Thank you Duke!  -Matt


(2 replies, posted in Chemotherapy)

Does anyone ever get something besides Gem/Cis as the first attempt at chemo?

Are there other chemo drugs that prove more effective assuming you've done genetic testing and found something suitable?

Would it be better to wait for the genetic testing and look for something better or start on Gem/Cis and then potentially switch?


(11 replies, posted in Good News / What's Working)

Fantastic news Lisa! Congratulations!  -Matt  smile

Thinking of you and wishing you a speedy recovery Porter! I'm so glad resection was an option for you again! -Matt


(1 replies, posted in Chemotherapy)

I just wanted to pass along a few active trials at the US NIH that are applicable for cholangiocarcinoma. I've been in touch with them for my situation and they sent me the following via email today:

ESOhttp://www.clinicaltrials.gov/ct2/show/ … amp;rank=9

MAGEhttp://www.clinicaltrials.gov/ct2/show/ … mp;rank=8; http://www.clinicaltrials.gov/ct2/show/ … mp;rank=13

MESOTHELINhttp://www.clinicaltrials.gov/ct2/show/ … amp;rank=2

TILhttp://www.clinicaltrials.gov/ct2/show/ … mp;rank=14


(149 replies, posted in Introductions!)

I saw Dr Pawlik at Johns Hopkins today and asked for his opinion about just going in and cutting out my new small 1.2 x 1.2 x 0.2 tumor.

He was in agreement with my surgeon at the Mayo clinic that I should first try chemotherapy to see if the existing tumor will respond but more importantly to see if more tumors appear or not over the next 3 months or so. If I respond well to chemotherapy AND there isn't more metastatic spread then both he and my Mayo surgeon are agreeable to respecting this new tumor.

I'm not surprised by his recommendation. As he said, surgery wouldn't be the first card out of his deck for me given the circumstances. He did indicate that it is unfortunate and not a good sign that the cholangiocarcinoma recurred as quickly after my last surgery as it did.

The new tumor isn't impacting my health so it's not urgent to get it out.

I have a PET scan in Richmond on Thursday to check for additional tumors and will meet with local oncologists next week to start the ball rolling on chemotherapy. I will have the chemotherapy locally.

If this route proves ineffective then I can enroll in clinical trials for more innovative but risky treatments.


(149 replies, posted in Introductions!)

My understanding is that it is possible however, you'd need to take enzymes and insulin for the rest of your life.

pfox2100 wrote:

Can they remove an entire pancreas?  Can one live without one?  Sorry, I feel like these are dumb questions but these questions came to my mind say if one had pancreatic cancer or mets in their pancreas, can the whole thing come out? I was under the impression all of a pancreas could not be removed.


(4 replies, posted in Clinical Trials)

I'd read that to mean you're on three weeks and off the next three - rinse & repeat. Did you look into it more or go down this path Duke?

DukeNukem wrote:

The FoundationOne report came back with possible several clinical trials.  Only one is convenient to me geographically.  That one (NCT02042443) has an arm that involves trametinib but has other arms that do not.  Obviously I am only interested in the one arm.

"Patients receive trametinib PO QD on days 1-21. Courses repeat every 21 days in the absence of disease progression or unacceptable toxicity."  Does this mean I get 21 days off between, or, the dosages vary and I take a pill a day every day until whenever?

Do I have to be administered the trametinib at the test clinic?  It is three hours away.  It would be much more convenient to have it administered locally.  Staying in a hotel for three weeks just to take one pill a day seems a bit ridiculous.  I could see visits on days 1, 7, 14, and 21, maybe.

Since only one of the arms would seem to work for me, could I have my onc prescribe trametinib under a "hardship exception"?



(4 replies, posted in Clinical Trials)

:: bump ::

Not a single response? I'm interested too as I expect to be going this route...


(149 replies, posted in Introductions!)

That's great to know Lainy - thank you!


(149 replies, posted in Introductions!)

The Whipple procedure involves removal of part of the stomach, gall bladder (mine is already gone), part or all of the pancreas, as well as the common bile duct.

There's a good set of videos and other information at http://www.whipplewarriors.org/the-whipple

Lots of risk of leaks and infection as well as digestive and insulin related issues post-surgery with that procedure. They rank the complexity right up there with a heart transplant.


(149 replies, posted in Introductions!)

Yep - your thoughts echo mine... why knock me down with chemo first? A brief call with my soon to be local Oncologist made me start to agree with them.

If I were to need a Whipple, that's major, life-altering stuff. So why subject myself to that if the cancer is just going to keep spreading? Recovery from that surgery would take months and I'd be unable to have chemo during that time, so then I'd be even worse off.

Best case scenario now which I am hoping for is:

1) The PET shows no other spread
2) I can find a surgical oncologist willing to cut out the new little tumor WITHOUT a Whipple
3) I do adjuvant chemo and keep it from coming back

The more-likely scenario is:

1) There may be spread elsewhere
2) I do chemo for a while
3) I do my best to get into a trial, perhaps joining Melinda's success with NIH NCT01174121.

It's no fun being back on the roller coaster...!


(149 replies, posted in Introductions!)

Hi Porter - basically, yes. Mayo is assuming the worst.

I'm starting to see the logic. It makes sense to try Gem/Cis and see if that prevents growth and spread for 2-3 months, then if it has, look into resection. Based on where this new tumor is they think it might require a Whipple to remove it and that's not a minor procedure...

Thanks for the note!



(149 replies, posted in Introductions!)


Thanks for note - I'll be driving up Monday morning. The appointment isn't until Noon on Monday so I'll be fine, even with traffic. I won't be staying over this time but will keep your hotel tip handy!

I appreciate the thoughts and tips very much!


middlesister1 wrote:

Matt. Not sure if you're driving up Sunday or Monday. Traffic can be bad around dc and baltimore.  I know the holiday inn near univ of md offers low rates(98) for patients.  If you're staying in Baltimore I would check with hopkins on hotel partnerships.

Thinking of you


(149 replies, posted in Introductions!)

Here's a little update on my journey.

I've got an appointment with Dr. Pawlick at Hopkins next Monday to get his opinion on resecting the new tumor.

I'm being scheduled for a PET scan here at VCU/MCV next week to determine if there are other tumors or just the one.

Mayo will consider resection, but only after I go on chemo for 2-3  months first.


(149 replies, posted in Introductions!)

The only evidence of spread is this new small tumor, however, I have only had an abdominal scan recently, no full chest or elsewhere.

DukeNukem wrote:

Is there any evidence from a CT scan that supports the spread of cancer?

There are people who have had multiple resections and are doing fine.  I've never been satisfied with, "well, it might make things worse" argument.  But I can't find an oncologist either locally or at Mayo who agrees with me.  Maybe it's a good thing I went into nuclear engineering (reactors are easy to understand and control) instead of medicine.  Besides, I hate the sight of blood - just like Dr. Martin.



(149 replies, posted in Introductions!)

Mayo's logic for not operating to take out the new (small?) 1.2cm x 1.2cm x 0.2cm tumor is that the cancer must have spread so I should start a systemic treatment ASAP. Taking time to do surgery and recover would delay the chemo and I'd end up right back where I started.

I don't like that line of thought.

Maybe it hasn't spread, maybe it won't if they remove this one bit, who can know...

I've got appointments with a GI doc, oncologist, and surgical oncologist locally in Richmond, VA at the VCU/MCV Massey Cancer center in the next two weeks.

I'm also going to reach out to Dr. Pawlick at Hopkins for another opinion on the surgical side.

Make sense? What else can/should I be doing while I feel perfectly normal?