1

(80 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.

3

(80 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.

5

(80 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

6

(80 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

7

(80 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

8

(80 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)

9

(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.

Julie,

After reading your post on H. Pylori I actually sent my local GP doc an email asking him if I could get a blood test for it and, if positive, be treated with antibiotics...

Here's the link to the Hope Lodge - there's a free shuttle to/from the clinic too. I've not stayed there personally, but it looks very nice. I'm not sure if you're allowed to stay without a caregiver with you... things to look into, for sure.

http://www.cancer.org/treatment/support … ng-with-us

Keep us posted. I'm rooting for you!!

-Matt

I'm SO SORRY to hear that you're experiencing all of this. After experiencing the level of competency and care I received at Mayo I'm scared to go anywhere else... I'm wondering if your local oncologist is behaving the way he is because he has little/no experience with cholangiocarcinoma? That's no excuse, and you DO deserve better.

Do you have the option to stay in Rochester while you're getting the chemo? Perhaps you could stay for free at the Cancer Society's Hope Lodge?

14

(4 replies, posted in General Discussion)

I'm told and read about how cholangiocarcinoma has a nasty habit of recurring after resection.

What kind of data is there to support this belief? Are there studies with results somewhere online? Does someone here at the foundation have data?

I'm curious about how recurrence of CC compares to other cancers too.

15

(16 replies, posted in Introductions!)

Hello and welcome Vince. I'm a 47 yr old married man with 4 children. I was diagnosed with perihilar CC in late Dec '13. I had a successful resection with clear margins and no spread to lymph nodes etc. in January '14. My tumor was 2.5 x 1.4 x 0.5 cm. I've chosen not to do chemo. My decision was based on my personal belief that the chemo doesn't have proven benefits but does have proven significant short and long-term side effects. If the CC comes back I'll have to revisit that decision. Only the oncologists I met with recommended it (6 rounds of gem/cis). The rest of my doctors effectively recommended against it. If I had signs of metastasis, like you do, I think my decision would have been different. Ultimately you need to make the best decision for you. Best of luck to you! -Matt

16

(15 replies, posted in General Discussion)

I've had (I like to say had to stay positive) Perihilar CC.

My father has lost several siblings to colon cancer at various ages. Some young, some old. My father just turned 79 on Easter Sunday (4/20/14) and has been getting non-cancerous colon polyps removed just about annually.

I had my first colonoscopy at 40 and was clean. CC diagnosis at 47 in December, successful resection in January, and because I was "freaking out" about all the different feelings from my ribs on down after surgery I had a colonoscopy in March. They did find one very small non-cancerous polyp near my rectum and removed it.

I, for one, think genetics definitely play a part.

17

(80 replies, posted in Introductions!)

I got cut short a bit on my previous reply due to work...

Latest medical update as of March: Clean scans and blood work - no recurrence. Decided not to do any adjuvant chemo.

I'm honestly still in shock and wish I could wake up from this nightmare. I'm coming to terms with my mortality - which I guess most of us do, eventually. All of us except those taken swiftly and/or by accident at a young age. It's giving me more appreciation for the little things in life and a better perspective, for sure.

I reached a new milestone for me this Easter weekend - my surgical wounds healed to the point that I no longer need to care for them so I took my first bath in a tub (vs shower) since before my surgery in January. That was nice. Not having to spend time twice a day unpacking and packing open wounds is nice too. I'm sure my wife will appreciate me putting away all of the wound supplies and getting our bedroom looking less like a hospital room.

Basically, I'm trying to just live fully, as if none of this has happened to me. My emotions have improved a lot but I still have triggers, songs, memories, thoughts, etc. that cause me to fall apart and into tears.

The Gift of Life Transplant House in Rochester, MN has this on the wall and I'm finding it a good daily reminder. I hope others here like it too. It's called Living Life – by Bonnie Mohr:

Life is not a race - but indeed a journey. Be Honest. Work hard. Be choosy. Say "thank you", "I love you", and "great job" to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you've been given, it is not accidental - search for your purpose and do it as best you can. Dreaming does matter. It allows you to become that which you aspire to be. Laugh often. Appreciate the little things in life and enjoy them. Some of the best things really are free. Do not worry, less wrinkles are more becoming. Forgive, it frees the soul. Take time for yourself - plan for longevity. Recognize the special people you've been blessed to know. Live for today, enjoy the moment.

This forum is GREAT - I really appreciate all the perspectives, information, feedback, and love that everyone here has.

-Matt

18

(80 replies, posted in Introductions!)

Hi!

You're so sweet to ask! I'm well.

After my recent check-up at Mayo I'm trying to just live as normally as possible and enjoy life. I'm back to working full time. I've been thrilled to focus again on family and things other than my health.

My oldest son turned 19 on March 28th, my daughter turns 16 on April 30th, my youngest son turns 6 on May 23rd, and my third son turns 8 on June 29th.

We've got vacation plans to head to a family house on a lake in NY in June and July.

I'll go back to Mayo in September for another check-up and I'm sure the scan anxiety will creep back up before then.

19

(80 replies, posted in Introductions!)

Just finished my day at the Mayo Clinic and I'm elated.

Blood work is all perfectly normal. CA 19-9 is 11. They did CT scans w contrast from the chest to the pelvis and everything looks great. Clean scans! Normal post-op healing and recovery and no signs of recurrence.

I'm just about due for a colonoscopy so I'll do that tomorrow just to put my mind totally at ease. If it weren't for prepping of that  test tonight I'd be out celebrating.

I've decided againt adjuvant chemo. I personally see too much risk for too little benefit.

I will come back to Mayo in 6 months for another follow up. In the meantime I intend to make them the best 6 months of my life thus far.

-Matt

Iowagirl,

This is what the Onc @ Mayo recommended as I met with him while in bed recovering from surgery:

"We reviewed with Mr. Reidy that we are hopeful that this tumor was completely resected and node negative. Despite this, I think the recurrence risks are still significant. Given the rarity of the tumor, there are no prospective randomized trials regarding the value of adjuvant therapy, but retrospective analyses would suggest there is likely some value to this.

In general, I have recommended six months of adjuvant gemcitabine as a very reasonable starting point for discussion. This is the most active single
agent in this disease and does have proven adjuvant benefit in pancreatic ductal adenocarcinoma. This is often well-tolerated with only a few severe side effects such as TTP and pulmonary fibrosis.

In metastatic disease, the addition of cisplatin to gemcitabine improves response rates and progression free survival and overall survival. He understands it is unclear whether that means it would be of further adjuvant benefit, but if the physician and patient wanted to err on the side of being more aggressive, this is also quite reasonable.

One could consider gemcitabine and cisplatin in the day 1, day 8, fairly low dose platinum schedule as outlined in the New England Journal of Medicine phase III trial in advanced disease and perhaps attempt four to six cycles of this.

I would certainly back off early with the cisplatin given the unknown benefits if he ran into early troubles with renal toxicity, neurotoxicity, ototoxicity, or other toxicities."

Iowagirl wrote:

Matt, I really appreciate you replying to my first post here.  You are the very first person who seems to understand exactly what I'm feeling right now.  I'm considering finding a therapist to talk with.....heck...at this point...my out of pocket is more than met...why not.  I'm glad to hear that is helping you.  What were the long term effects of the chemo you mentioned?  I've been trying to look into this, but since I have no idea what they have in mind, researching it is a shot in the dark.  I think that because I had a small satellite tumor along with the main tumor, my survivability goes down some, and intrahepatic tends to come back more frequently from what I've read.  What the heck....all bile duct cancer is bad stuff.  I, too, am hoping to be in the 60-70% chance group in which it doesn't return.    Really....I am soooo  glad to hear from you though.  The emotional and anxiety aspect of this and reactions of people around me just has me feeling out of control.  I am quite certain that most everyone who has been diagnosed with cancer of any kind has these feelings to some degree, but when you get a diagnosis of bile duct cancer....or pancreatic cancer....some of the more aggressive and resistant cancers and you hear the numbers, it's more depressing.

21

(80 replies, posted in Introductions!)

I'm heading back to Mayo next week for some follow up after a frustrating time getting anyone locally to act with any sense of urgency.

Today I am 10 weeks post op and have had nothing but blood work done. It's all looked very good, including one CA 19-9 result, however, I just don't feel "right". I don't know if the way I feel is my new normal or something else and my anxiety about it is through the roof. My back hurts.  My bowels are sensitive with pretty regular movements but they range from constipation to diarrhea in the same sitting. Maybe that's just the lack of a gallbladder? I've got head aches and I've never had them in my entire life before. I can't feel my bladder getting full like I used to... Maybe that's nerve damage from the incision across my belly? I fell something but it's not like it was. I get strange sensations bordering on pain sometimes all over in my GI tract. We have a family history of colon cancer. I'm 47 and had a colonoscopy at 40 that was clear. I don't have bleeding or blood in my stools or other typical symptoms so hopefully it's just my anxious mind. I'm afraid to ignore the off/odd feelings I get now. The last time I had some, they ended up being CC!

While I'm at Mayo next week I'll get blood work, a CT of the chest, a demon, and pelvis, meet with my surgeon who will review the scans to validate my new anatomy, meet with my regular doc who will review scans for recurrence of CC, meet with an onc to see if they recommend anything new, other than gem/cigs, and have a colonoscopy to rule out any colon cancer going on in there.

I'm starting to feel the scan anxiety so many talk about here. Yuck

Thanks for "listening".

-Matt

Iowagirl,

You're not alone in your emotions. I had a successful resection at Mayo for Perihilar CC and can't help think about and fear recurrence every day now. My surgery was not laparoscopic and I'm still not comfortable after 10 weeks of recovery. I've found a local therapist who is also a nurse and she's great to talk to. Everyone seems to expect me to forget it and live on as if it's all behind me. I sure hope I prove the stats wrong and end up on the good but small side but only time will tell. I've chosen to not do adjuvant chemo at this point for several reasons, primarily the lack of evidence that it helps and the preponderance of evidence that the long term effects are not good. Who were the docs you saw at at Mayo if you don't mind sharing?

Continued good luck to you!  -Matt

I'm seeing many references to back pain smatterd about the discussions.

What's the cause of it generally?

I'm having some post op after a resection and attribute it just to poor posture for the past 10 weeks along with a loss of muscle strength. I'm expecting mine to go away but would like to know if there's something I'm missing...?

I'm glad to hear you're sleep and appetite have improved and will pray for you!

PCL1029 wrote:

Hi, everyone,
I went thru the chemotesting by Target NOW report, and the next Generation gene seauencing profile. I also saw the doctor at Mayo's Individualized Medicine Clinic .
My conclusion:    Target NOW  will list the drugs that patient will be more sensitive to and Foundation ONE report will report the gene mutations of the patient; but neither is of great benefits to patients who are suffering now.
In short, most oncologists do not pay attention to the reports now due to the fact that this are new technology  but few proven new drug to work with.

BTW, I feel a bit better, stop loss of weight, Megace helps to increase appetite, and I eat more now as compare a month ago. I use ibuprofen and cut the Oxycontin dose in half  for my back pain and use Miralax to help constipation. I sleep much better than a month ago (now I sleep almost 8hr/nite) with the pain pills and sleeping aid.Hot bath 2-3 times daily helps the pain; doctor visit every week  and he plans a PET scan in 3 month instead of 2month . I am sure I will ask for earlier PET to be done. Fatigue is a major problem since now the oncologist put me back on Xeloda 1gm twice a week every  5days out of 7 days to slow the growth of the tumor.
If I have more energy, I will look into TIL@NIH.

Thanks for those  who pray for me and I hope other patients will improve their conditions as well.
This is really not an easy journey to take.

God bless.

Maybe this is old news, but I came across it just today and thought I'd share.

http://www.news-medical.net/news/201402 … ncing.aspx

Physicians at Mayo Clinic's Individualized Medicine Clinic and researchers at the Translational Genomics Research Institute (TGen) have personalized drug treatments for patients with cholangiocarcinoma using genomic sequencing technologies. Potential new treatment approaches are being validated to develop new tests that physicians can use to guide therapy for this aggressive cancer of the bile ducts that progresses quickly and is difficult to treat.

Clinically important findings suggest that targeting the epidermal growth factor receptor (EGFR) and the fibroblast growth factor receptor (FGFR) cellular pathways may benefit thousands of patients with this disease, according to the study published today in the journal PLOS Genetics.

Half of the patients treated in this study responded to either ponatinib (typically used for certain types of leukemia) or pazopinib (a kidney cancer drug), depending on the genetic alterations identified through sequencing.

"In 3 out of the 6 patients we analyzed, we found compelling, treatable and unexpected genetic alterations that would never have been found by normal testing methods for cholangiocarcinoma," says Mitesh Borad, M.D., a Mayo Clinic oncologist and lead author of the paper. "We treated these three patients with drugs that attack these genetic alterations and saw tumor shrinkage. This gives us hope for better treatments for this aggressive, hard-to-treat cancer."

Because of these encouraging early results, the team of 49 doctors and researchers proposes large-scale clinical trials to test EFGR and FGFR inhibitors as possible treatments for biliary tract cancers that harbor mutations in these genes and pathways.

"Our results demonstrate that if we find the right molecular context, more appropriate therapies can be chosen that improve outcomes," says John Carpten, Ph.D., TGen deputy director of basic science and director of TGen's Integrated Cancer Genomics Division, and the study's senior author. "We now hope to design larger clinical studies to treat patients' tumors harboring these novel genomic aberrations to further explore the precise extent of clinical benefit for patients with primary or advanced cholangiocarcinoma."

Bile duct cancer is a rare cancer that occurs mostly in people older than age 50. Surgical approaches, such as resection and liver transplantation, represent the only curative treatment approaches, says Dr. Borad. Most patients, however, present with surgically unresectable or metastatic disease at the time of diagnosis. Standard-of-care chemotherapies are not curative and there is an unmet need for newer approaches, Dr. Borad adds.

Source: Mayo Clinic

25

(8 replies, posted in Introductions!)

Dan, I'm sorry about your father's and your extended family's journey. You've found a great place for support and advice here. I started my own similar journey with CC this past December.

I had a combined ERCP and EUS procedure at the Mayo Clinic in late December after an MRCP at my local hospital showed a mass and biliary dilation. During that procedure they installed two stents to get my bile flowing again and also attempted to get some cells via "brushing" so they could confirm CC via pathology. The brushing didn't yield any cells so we went off the imaging and symptoms to conclude CC. You may not get physical/pathological proof.

I have to agree with your statement "this is a bad illness for a 56 year old let alone an 86 year old". I had successful surgery to resect the tumor in mid January at Mayo. I'm only 47 and otherwise extremely healthy. Recovery from my surgery was a lot more difficult than I expected, maybe because I had two surgeries in 24 hours. It's 8.5 weeks post-op now and I am just back to work yesterday and starting to feel somewhat normal.

I will be thinking of you, your father, and the rest of your family at this difficult time.

The more we all share and care, the better.

-Matt