Forum Replies Created
July 23, 2018 at 8:47 pm in reply to: the passing of Marion Schwartz #97298
I am heartbroken by this news. Marion was a wonderful, selfless woman and a powerful advocate for this community. She was a shining example of how to give to everyone and make a difference. Rest in peace.July 17, 2013 at 1:00 am in reply to: Treatment options post whipple??? #73744
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.July 16, 2013 at 10:11 pm in reply to: Treatment options post whipple??? #73742
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.
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.July 11, 2013 at 5:27 am in reply to: Another Newbie #73306
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.July 6, 2013 at 11:34 pm in reply to: Bile Duct cancer in patients over the age of 80Are #73404
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.July 5, 2013 at 12:51 am in reply to: Another Newbie #73290
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.
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.
EliJune 18, 2013 at 1:18 am in reply to: Stable on trial drug #72941
Excellent news Kris!!!
June 15, 2013 at 11:48 pm in reply to: Hi everyone #72848
You wrote:Quote: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:Quote: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.June 14, 2013 at 5:22 am in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67799
You wrote:Quote: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/739598June 11, 2013 at 2:24 am in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #677952000miler 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.June 11, 2013 at 1:00 am in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67793
Take a look at this article.
Definition section says:Quote: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:
Adenocarcinoma of the duodenum
Carcinoma of the distal bile duct (extrahepatic CC)
Carcinoma of the pancreasJune 9, 2013 at 7:22 pm in reply to: Update on Lauren #72234
Pam, my heart breaks for you and your family. May you find strength in this time of grief.
Rest In Peace, Lauren.June 2, 2013 at 5:03 am in reply to: Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS) #67759
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.
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.longMay 30, 2013 at 2:58 am in reply to: Do most CC patients have PSC #72567
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.
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.May 29, 2013 at 3:56 am in reply to: Hi everyone! #72555
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.