Pacemaker? He *must* seek a second opinion from his cardiologist. The proposed treatments are very tough on the body, including heart. My wife had some issues with irregular hearbeats during her treatments. She was in great shape before she got diagnosed (and much younger than your dad). I don't want to scare you... just pointing out that you have to be mindful of his heart condition.

Re margins: do you have a copy of the full pathology report post Whipple? It should note the status of the surgical margins. If all margins are clean, I would seek a second opinion from another oncologist about radiation.

How old is your dad?

Do you know the status of the surgical margins? (negative / microscopically positive / macroscopically positive)

My wife had Whipple two years ago at the age of 44. Extrahepatic CC, Stage 2B. 2/15 positive nodes. Microscopically positive margins where they reconnected the common bile duct.

She had radiation for 28 days combined with 5FU chemo around the clock.

Followed by: 6 cycles of Gemcitabine/Cisplatin chemo. 2 weeks on, 1 week off. 12 trips to the chemo chair in total.

To answer your question, your dad's treatments sound appropriate, but that depends a lot on his age and general state of his health. Positive node is a big risk factor. Note that I'm not a doctor.

Take a look at NCCN Treatment Guidelines for Hepatobiliary Cancers. You will need to register for a free account to see the PDF.

http://www.nccn.org/professionals/physi … iliary.pdf

The document describes the current standard of care for CC. Slide #30 (labelled EXTRA-2) is the one you should be looking at. It shows the treatment protocols post Whipple.

Given that your dad is very discouraged, it's a good idea to go for a second opinion at a major cancer center that sees many CC patients.

3

(29 replies, posted in Introductions!)

Hi Denise,

Ask Mayo doctors about transplant option before doing needle biopsy.

I heard that needle biopsy may disqualify the patient from receiving the transplant, because of the risk you mentioned (spilled cells).

Mayo is the leading transplant center. I'm sure they know what they are doing, but I thought I'd mention this anyway.

Hi Orlysud,

My wife had surgery, radiation and chemo at the age of 44/45. These are tough, tough treatments. After witnessing, up close, what my wife had to endure, I can tell you this: I can't imagine an 83 year old receiving the same treatments.

I think you have to open your mind to the idea that your mom's doctors did the right thing.

5

(29 replies, posted in Introductions!)

Hi Denise,

Welcome to the forum but sorry that you had to find us.

My wife got diagnosed with extrahepatic CC two years ago, a few short days after she turned 44. Same age as you.

Like you, she had CT, MRI, ERCP with stent placement, and a brushing biopsy. The biopsy came back suspicious for cancer but inconclusive. This is very common. The brushings collect a very small amount of tissue. The pathologists have a hard time confirming or ruling out cancer based on the tiny sample they have to work with.

If all other evidence points to CC, the surgeons may recommend surgery in the absence of a positive biopsy. That's what happened to us. We gave consent to Whipple surgery even though cancer diagnosis wasn't 100% certain. CC was confirmed by the full pathology report *after* the surgery.

If your biopsy ends up negative or inconclusive, ask your doctor's opinion about the following two options:

1. SpyGlass biopsy. It's an endoscopic procedure similar to ERCP. SpyGlass biopsy uses forceps, so it's able to collect a larger tissue sample.

The downside of SpyGlass: a negative result cannot rule out cancer.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096127/
http://www.ncbi.nlm.nih.gov/pubmed/22178463

2. Endoscopic Ultrasound (EUS). Again, it's an endoscopic procedure similar to ERCP. My wife had EUS done after her biopsy turned up inconclusive. EUS sealed the deal for us. We gave consent to Whipple the day after EUS. My understanding is that EUS is not a very common test. If you end up doing it, try to find a very experienced doctor. That way you can feel more confident about the results.

Welcome again. Please keep us posted.

Best wishes,
Eli

Dear Percy,

I am very saddened to hear that your cancer returned. You are an inspiration and a hero for all of us on the board. You helped so many while facing your own challenges. I personally learned so much from you. I wish you the best with your treatments. I know you will leave no stone unturned looking for the best course of action.

Stay strong, my friend. You will be in my thoughts.

Hugs,
Eli

Excellent news Kris!!!
smile

8

(15 replies, posted in Introductions!)

Hi Hugh,

You wrote:

My question is there are 2 ways of adjuvant treatment from 2 different Dr. I consult. which one should I choose...

1. GP which is Gemcitabine and Cisplatin for 3 weeks treatment total of 6 treatments (which is totally free through government hospital)

2. IMRT with Xeloda for 5 days a week total of 5 weeks treatment and then if possible 3 more 3weeks treatment of Xeloda and Oxaliplatin for preventive.
this sounds more aggressive and for sure this I have to pay massive amount which is not cover by government nor insurance.

You can lower your out-of-pocket cost by doing IMRT with 5FU, followed by Gemcitabine and Cisplatin. This adjuvant treatment plan is common in North America. My wife had this treatment after her surgery.

I'm not aware of any data to say that IMRT+Xeloda is more effective than IMRT+5FU, or that Xeloda/Oxaliplatin is more effective than Gemcitabine/Cisplatin.

Note that 5FU and Xeloda are similar drugs. Xeloda is a pro-drug of 5FU. It converts to 5FU in the liver. 5FU is older than Xeloda, so it costs less. Xeloda is more convenient for the patient because it's a pill that you can take at home. 5FU is done through IV.

You further wrote:

Dr Chow is the oncologist that suggest the IMRT+Xeloda , she was saying if GEM/CIS can lower the recurrence chance by 10-30%, then IMRT+Xeloda should be around 40-60%.

I understand those numbers is kind of BS

I agree with your assessment. I think she pulled those numbers out of thin air to sell you on her treatment plan. I doubt she can produce any solid evidence to validate her claim. By solid evidence I mean published, peer-reviewed medical studies.

That said, I think she is right to recommend a more aggressive treatment that combines radiation and chemo. 5 positive nodes put your wife at a high risk of recurrence.

Hi Bruce,

You wrote:

Is there any difference between the hilar cc that is referred to as being intrahepatic cc and the perihilar cc that is referred to as being extrahepatic cc?

I don't think so. As far as I know, hilar cc and perihilar cc is the same thing. Hilar CC was misclassified as intrahepatic at some point. The classification was later corrected, but much confusion remains.

See if you can access Patel's paper, Cholangiocarcinoma - Controversies and Challenges. He discusses classification challenges in section 2. You might need to register for a free Medscape account to see the paper.

http://www.medscape.org/viewarticle/739598

2000miler wrote:

Are they trying to say something like distal cholangiocarcinoma account for 27% of the extrahepatic cholangiocarcinomas and perihilar cholangiocarcinoma accounts for 60-80%, or maybe 73% if the 27% is correct.

Bruce, I read it the same way you did.

Bruce,

Take a look at this article.

http://www.ncbi.nlm.nih.gov/books/NBK6924/

Definition section says:

Periampullary carcinoma is a widely used term to define a heterogeneous group of neoplasms arising from the head of the pancreas, the distal common bile duct and the duodenum. This term should be distinguished from ampullary carcinoma as a tumor topographically centered in the region of the ampulla of Vater...

The next section ("Epidemiology, clinical characteristics and diagnosis") enumerates cancers included in the periampullary carcinoma group:

Ampullary cancer
Adenocarcinoma of the duodenum
Carcinoma of the distal bile duct (extrahepatic CC)
Carcinoma of the pancreas

12

(167 replies, posted in General Discussion)

Pam, my heart breaks for you and your family. May you find strength in this time of grief.

Rest In Peace, Lauren.

Bruce, take a look at the articles below. Klatskin (hilar) tumors were misclassified as intrahepatic in the second edition of the ICD-O. Misclassification affected SEER data.

Impact of classification of hilar cholangiocarcinomas (Klatskin tumors) on the incidence of intra- and extrahepatic cholangiocarcinoma in the United States.
http://www.ncbi.nlm.nih.gov/pubmed/16788161

Re: Impact of Classification of Hilar Cholangiocarcinomas (Klatskin Tumors) on Incidence of Intra- and Extrahepatic Cholangiocarcinoma in the United States
http://jnci.oxfordjournals.org/content/99/5/407.1.long

Patrick,

CC has a long list of known risk factors. PSC, liver flukes, hepatitis B/C are at the top of the list.

People who have PSC.... or liver flukes.... or hepatitis B/C... are more likely to develop CC than an average healthy person.

But:

It doesn't mean that every CC patient has a known risk factor. Most CC patients have what doctors call a sporadic disease. They don't have any confirmed risk factors.

My wife got diagnosed with CC at age 44. We don't know why she got it. She was never diagnosed with PSC, or hepatitis, or liver flukes, or anything else.

15

(4 replies, posted in Introductions!)

Hi Steve,

Welcome to the forum. I'm a caregiver for my wife. She is the one with CC. We live in Ottawa. In Nepean, to be precise. My wife received all her treatments at The Ottawa Hospital.

Looking forward to hearing more about you.

Best wishes,
Eli

I'm quoting from NCCN Guidelines for Cholangiocarcinoma, one of the most definitive medical resources on CC.

The section on risk factors says:

"No predisposing factors have been identified in most patients diagnosed with cholangiocarcinoma, although there is evidence that particular risk factors may be associated with the disease in some patients."

This is consistent with what I read in many other medical articles. Most CC patients do not have any known risk factors.

It's true that PSC is a strong risk factor for CC, but I think it's wrong to say that most CC patients have it.

I don't know anything about it. I just want to post a few links, for the reference.

Wikipedia article on TH-302
http://en.wikipedia.org/wiki/TH-302

TH-302 clinical trials
http://clinicaltrials.gov/ct2/results?term=TH-302

PubMed articles that mention TH-302
http://www.ncbi.nlm.nih.gov/pubmed/?term=TH-302

Searching PubMed for TH-302 and CC doesn't return any results.

Hi Colin,

I'm a caregiver for my wife. She is the one with CC. She had her surgery here in Ottawa at The Ottawa Hospital.

Dr. Fady Balaa investigated my wife's case when her symptoms showed up.

Dr. Richard Mimeault did the surgery. We picked him based on the recommendations from our family doctor and a family friend who is an operating nurse at the hospital.

Both these surgeons are very familiar with CC. They see a large volume of patients with the cancers of liver, pancreas and bile ducts.

I believe you need a referral from a physician to arrange your first consultation.

The Ottawa Hospital - Liver and Pancreas Clinic
Main Line: 613-761-5015
Office Manager: 613-798-5555 ext. 17498
Assistant: 613-798-5555 ext. 13900

Best wishes,
Eli

My wife's oncologist told us that CTs are better than MRIs for lung imaging.

In fact, he might have said "much better". It's been a while so I don't recall how exactly he worded it.

20

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

Randi, congratulations! Great news!!

Lainy, thank you so much for this update.

Randi, best of luck tomorrow!

23

(122 replies, posted in General Discussion)

Pam, my best wishes for tomorrow. Thinking of Lauren.

Hi Tiff,

This is exciting news! I like those odds. Sending tons of positive thoughts your way.

Hugs,
Eli

25

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

Hi Susie,

Marina is doing great, thanks for asking. She is back to work full time as of December. She goes to the office every day.

Her digestion and plumbing are fine, as long as she sticks to home cooked, comfort food. She has to watch her portion sizes. She feels discomfort occasionally when she overeats or grabs something unhealthy. She is very disciplined about it though, so it doesn't happen very often.

Marina regained most of her old weight but not all of it. Her face rounded out very nicely... BIG contrast to how she looked 12 months ago when she finished chemo.

Like you, she takes proton pump inhibitor (Pantoprazole) for acid reflux. As a Whipple patient, she will be taking it for the rest of her life. Aside from PPI, she doesn't need any medication. She takes some self-prescribed supplements and vitamins, but they are optional.

Marina still has her port, 12 months after chemo. She goes to the hospital once a month to flush it. I'm not sure when she will find the courage to take it out. I don't ask. I want her to make up her own mind without feeling any pressure. You've been there so you know the trade-offs.

As far as exercise goes... we are looking forward to the start of the cycling season. Marina can ride a bike despite her surgical hernia. She cycled daily last summer and fall.

Susie, I'm glad to hear that you are able to run. That's a great sign. Keep up the good work!!

Best wishes,
Eli