1

(9 replies, posted in Introductions!)

Welcome Helen. I'm sorry that you're going through this but glad that you found this site and forum. It's a great source of information and support. I too had a resection for perihilar CC. That was in January 2014. My margins were clear and there was no metastasis so I personally chose not to pursue adjuvant chemo.

Feel free to reach out with any questions on recovery etc.  Wishing you a speedy recovery.

-Matt

2

(194 replies, posted in Hospitals)

I went to the Mayo Clinic in Rochester, MN for testing and in hope of having a liver transplant for my perihilar CC in Dec 2013. I saw Dr. Greg Gores and his fellow Dr. Sumera Rizvi. I was luck enough to be able to have a resection instead of a transplant. My surgeon at Mayo was Dr. David Nagourney. I choose not to pursue adjuvant chemotherapy because I wasn't convinced the benefits outweighed the risks so I have no oncologist. I continue to travel from VA to MN regularly for "surveillance".

3

(95 replies, posted in Introductions!)

Iowagirl wrote:

{snip} I must ask about the CA 19-9.  That has never been drawn again since before diagnosis that one time.  It was negative then...so maybe that's why they don't rerun it.  But, I figure if the CC comes back...it's possible that a new location might run up the CA 19-9???????   Dunno!   As I said...I need to ask.  In fact, all of my blood counts were in the normal range before diagnosis....so the blood labs really only have shown issues that the chemo caused.    Are you getting the CA 19-9....and was it elevated when you were diagnosed?  I{snip}

Julie, my CA 19-9 was 453 upon diagnosis, about 2 weeks prior to surgery. They check it routinely now. It was 11 one time and 10 the next. Under 55 is "normal".

4

(95 replies, posted in Introductions!)

Hi Everybody.

This Saturday, 1/17/15, will be the one year anniversary of my surgical resection with clear margins.

I've made an appointment with my team at the Mayo Clinic in Rochester, MN for bloodwork and an MRI to look for recurrence and/or metastasis.

This will be my fourth follow-up visit/scan and the scanxiety is going up every day now... I could use some encouragement  smile

Mentally/emotionally I feel great for about a month or two after a clean scan and then gradually start worrying about the next scan until it gets pretty consuming. I know it's pretty normal but I can't help thinking about if/when the CC comes back.

I tell people that this past year, including CC diagnosis, surgery, and recovery, has been both the worst and the best year of my life. I've gained a new perspective on life and made some related changes as a result.

I continue to visit this forum primarily to keep tabs on some of you, my friends, and your journeys. I also try to focus on the long term survivor stories and hope to be contributing to them myself over the years. It is SO SO very helpful to hear from the people who have survived CC for years.

If anyone's going to be in Rochester, MN the week of 1/26/15 and would care to meet, I'd love it - let me know!

-Matt

I'm sorry that you had to find us but glad you have, given the circumstances. This forum is a great place for information and support.

I was diagnosed with Perihilar CCA the week before Christmas last year (Dec 2013) at age 47.

Especially given your location in MN, I highly recommend the Mayo Clinic - I travelled there from VA for a second opinion and, ultimately, curative surgery. The team is top notch and very experienced with CCA.

Best of luck to you and keep us posted.

-Matt

Julie,

We're about next to each other in similar boats...

My diagnosis was late Dec 2013 with surgery in Jan 2014. I've ended up having CT scans about every 3 to 4 months since for one reason or another. I'm due for another in Jan 2015 and would prefer an MRI if that's sufficient. I've been "radiated" so much in the past year that I've refused my routine dental x-rays at my last to exams. ha...

I find my scannxiety comes back after about 3 months, but a little lexapro helps a lot.

Congrats on your latest results. May there be MANY more like them!

xoxo

-Matt

From 60 minutes broadcast on 12/7/2014:

Disrupting Cancer
Billionaire Dr. Patrick Soon-Shiong is turning heads with unconventional ways of treating the deadly disease

http://www.cbsnews.com/news/billionaire … ional-way/

8

(36 replies, posted in General Discussion)

Praying for it to be nothing to worry about...! -Matt

9

(40 replies, posted in Clinical Trials)

Fantastic! xxoo

10

(95 replies, posted in Introductions!)

Hello all,

It's been about 10 months since my diagnosis and 9 months since my surgery. I had some blood work done last week and am relieved and happy to say that everything remains normal, including CA 19-9. My next check up with scans and blood work will be in January 2015.

I offer my good news as a source of hope for others with similar experiences.

xo

-Matt

11

(6 replies, posted in Members' Cafe)

Julie, I'm riding in a different car on the same road with you here... although I choose not to do the adjuvant chemo.

I am constantly reminded about this disease by my massive "shark bite" scar, odd/different feelings in my abdomen, emotions, thoughts, and memories of what's occurred over the past 10 months, etc. I worry about the next scan or blood test results. Waiting to see if or when the roller coaster will drop again. I read new posts in the Introductions thread here with interest but apprehension because I empathise so deeply with others who have/had this disease.

It's been long enough that it's starting to feel surreal - did this REALLY happen to ME? If you're not there yet, you will be - I'm confident in that.

I've changed, that's for sure, and I know you and everyone else has too. I try focusing on the simple moments in everyday life that make it all worth it. Holding my youngest boy's hand when I pick him up after school and feeling his soft, warm, skin, for example. In Virginia, driver's licenses are given to a parent by a judge at an official ceremony vs. directly to the new driver (strange, but true) and just this week I took my daughter to get hers. She thanked me for being there and I let her know how glad I was to be able to... we both got teary and I let her know that I look forward to her high school graduation, first day of college, college graduation, marriage, etc. Maybe that's a bit too optimistic, I really don't know, but then again, who does, I suppose.

Every night I thank God for the memories made this day and tell him that I look forward to tomorrow's.

Anyway, enough rambling... I'm "here", "with" you and glad to see you're doing well!

-Matt

12

(4 replies, posted in Introductions!)

Welcome and congratulations on the successful resection!

I also had a successful resection this past January. Do you mind sharing more about your particulars? I assume you had perihilar CC? Did you have clear margins? Any spread to lymph nodes or elsewhere?

Good luck with the adjuvant chemo - I choose not to go that route myself.

It's a bummer that searching cancercare.org doesn't return *any* results for bile duct cancer or cholangiocarcinoma...

Maybe someone at cholangiocarcinoma.org could ask them to add it?

I highly recommended the Mayo Clinic in Rochester Minnesota USA. Drs Greg Gores and David Nagourney saved my life with surgical resection of my perihilar CC in January 2014.  Mayo is well accustomed to serving international patients as well. See http://www.mayoclinic.org/patient-visit … ernational

15

(95 replies, posted in Introductions!)

Hi Dianne,

I'm just now reading your post - I'm so sorry to have missed it!

Yes, amazing doctors and amazing facility. I'm not going anywhere else for medical care from now on even tho it's a long haul from VA to MN!

The only oncologists I saw were while in my hospital room recovering from surgery. I can't remember their names but know it wasn't Dr. Alberts.

I love hearing of others with similar experiences that are still around to share! Best of luck to you!!

-Matt

Dianne.N wrote:

Hi Matt....I wanted to reply to your post because we sound like we've had very similar paths, with the same doctors!, and I'm 4 1/2 years post resection!  My symptoms started right after Thanksgiving dinner in 2009 with severe indigestion.  Then I got the itching and finally an MD friend of mine got me to my local doctor who did an ultrasound and MRI and recommended a major cancer center.  I went to Mayo in Rochester in Dec. 2009 and saw Dr. Gores and then Dr. Nagorney...both amazing doctors who saved my life.   My surgery was Jan. 5 and I chose not to do any adjuvant therapy.  I had a few bumps in the road after the surgery but am pretty much fine now...except that the docs kept scratching their heads regarding some enlarging mesenteric and retroperitoneal lymph nodes.  I finally had a biopsy of a mesenteric lymph node that revealed I have follicular lymphoma which is much more treatable than CC.  I see an oncologist this afternoon to figure out treatment for the F.L.  Anyway, I'm wondering who your oncologist is at Mayo.  I had Dr. Alberts initially but for some reason that I don't understand he has not been assigned to me the last two times I was at Mayo.  (Oh, I take Metamucil every day for diarrhea issues - it helps.) I know this must be very difficult for you with younger kids at home, but it sounds like you have a great attitude.  We learn to enjoy and appreciate each and every day!

Congrats Julie! May there be many many more...!  -Matt

Iowagirl wrote:

It's been 6 months since my 5 cm intrahepatic tumor was found in late January 2014 and 5 months since surgery to remove the left liver lobe along with the 5 cm tumor and one small one next to it. 

Today, August 1, I had an MRI (problems with the CT that was planned)  which came back totally negative....no sign of any new growths anywhere or anything remotely suspicious. 

I come back here again in 3 months for another scan.

More in the next couple days regarding round 6 of my chemo.  Right now, I"m exhausted after a full day at the clinic and then in the ER at a local hospital tonight for an abscessed toenail infection.  GAH!!!!

God is good....life is good.

17

(95 replies, posted in Introductions!)

Today I celebrate 6 months of being cancer free after diagnosis in Dec 13 and surgery in Jan 14.

I post this to offer hope to those that may follow who are lucky enough to  have caught this beast in time for a curative resection.

-Matt

I was diagnosed in Dec 2013 and took it upon myself to go to the Mayo Clinic in MN where I underwent two weeks of testing for their transplant protocol. I was lucky and resection without transplantation was an option that I choose and it was successful.

I do have to say that the numbers referenced for the protocol can be misleading. The "bar" to be accepted into this transplant protocol is very high. They only accept the most healthy individuals  so that has to skew the numbers upward, I would think.

19

(95 replies, posted in Introductions!)

I wanted to post an update on my latest scare.

My wife and I took an expensive, spur of the moment, trip to the Mayo Clinic in MN last Tuesday to get to the bottom of my elevated bilirubin level. I had blood tests and an MRCP last Wednesday and met with my doctor for results on Thursday. Everything came back completely normal. Bilirubin was not elevated, CA 19-9 was 10 (down from 11 in April). MRCP images were all normal too - no strictures or blockage of any kind. We came home to VA Friday evening. My Mayo doctor doesn't want to see me again until early 2015 for my next follow-up scan.

While I'm glad the results were all clear, I can't explain why I was feeling poorly or why the local bilirubin blood test result came back high. My Mayo doctor said there are some differences in how bilirubin is tested/calculated from place to place.

The doctor also recommended that I try "bulking up" my stools using metamucil to see if that helps with the chronic loose stools I've been having. I'm giving that a try...

-Matt

MattReidy wrote:

Hi all,

I've been feeling fatigued for a few weeks and has some blood work done this past Friday. I got the results and my total bilirubin is a bit high at 1.7 mg/dL - up from 0.5 mg/dL in April.

My doctor suspects a stricture of/in my anastomosis and wants to do an MRI/MRCP to take a look and then if necessary, and ERCP to place a stent and open it back up.

Does anyone have experience with anastomosis strictures that would like to share anything?

I'm worried...

Thanks!

-Matt

20

(95 replies, posted in Introductions!)

Hi all,

I've been feeling fatigued for a few weeks and has some blood work done this past Friday. I got the results and my total bilirubin is a bit high at 1.7 mg/dL - up from 0.5 mg/dL in April.

My doctor suspects a stricture of/in my anastomosis and wants to do an MRI/MRCP to take a look and then if necessary, and ERCP to place a stent and open it back up.

Does anyone have experience with anastomosis strictures that would like to share anything?

I'm worried...

Thanks!

-Matt

21

(95 replies, posted in Introductions!)

Thank you all for the med suggestions. I'm not taking anything at the moment nor have I tried anything yet. I'll look into it.  xo

22

(95 replies, posted in Introductions!)

Hello Everyone,

I'm almost 5 months post-op and still battling daily abdominal cramps and diarrhea. The only regular meds I'm taking are a baby aspirin and multivitamin.

I know it's fairly common to have issues digesting fat without a gallbladder, but does anyone have any tips/suggestions/medications to help alleviate the symptoms besides the obvious (eating less fat)?

Is it also the constant flow of bile into the intestines that causes this? Is there something I can take to absorb it?

Thanks!

-Matt


Here are the details of my surgeries (I had a bile leak after the initial surgery so they had to go in and fix that the next day) and my outcome/diagnosis:

OPERATIVE PROCEDURE:
17-Jan-2014:
1. Diagnostic laparoscopy.
2. Hilar and celiac lymphadenectomy.
3. Left hepatectomy.
4. Roux-en-Y hepaticojejunostomy.
5. Cholecystectomy.

OPERATIVE PROCEDURE:
18-Jan-2014:
1. Abdominal exploration.
2. Ligation of posterior bile duct branch.

FINAL PATHOLOGY:
A. Lymph nodes, gastric, dissection: Lymph node tissue,
negative for malignancy.
B. Soft tissue, new bile duct margin, excision: Negative for
tumor.
C. Left lobe of liver, gallbladder, extrahepatic bile duct and
regional lymph nodes, Left hepatectomy, cholecystectomy and
lymphadenectomy: Invasive, moderately to poorly differentiated
cholangiocarcinoma is identified, forming a 2.5 x 1.4 x 0.5 cm mass
involving the common hepatic and the left hepatic bile ducts. The
tumor invades into periductal soft tissue. Perineural invasion is
identified. The surgical margins including the hepatic parenchyma
and the bile duct are negative for tumor. Small
vessel invasion is identified but no major vessel invasion is seen.
The gallbladder is negative for tumor. Multiple (9) lymph nodes are
negative. The non-neoplastic parenchyma is negative for tumor.

DIAGNOSIS:
AJCC stage: pT2aN0 (7th edition)

23

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

Congratulations to you and Mark both Kris! May there be many many more!

I'm about 6 months behind you and will be cheering for you all along the way.

-Matt  xo

There's this too... http://www.ncbi.nlm.nih.gov/pubmed/24535250

I'm going to start taking a "baby" aspirin, daily...

I'd think it's worth a call to see if you qualify anyway, if you haven't already.