Eli
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They are no longer enrolling negative margins (R0) patients.
Quote:
Quote:R0 stratum closed as of 12-15-11The trial is still open to positive margins (R1) patients.
University of Maryland article has a warning about possible interaction with antacids.
http://www.umm.edu/altmed/articles/dandelion-000236.htmQuote:Antacids — Dandelion may increase the amount of stomach acid, so antacids may not work as well.This warning might be relevant to the Whipple patients. If you are a patient post-Whipple, increased stomach acidity is likely undesirable. Talk to your surgeon before adding dandelion to your diet.
The reason I mention this:
My wife had a Whipple in 07/2011. She takes Pantoloc (Pantoprazole) every morning to *reduce* stomach acidity. The surgeon prescribed it to protect the new surgical connection between the small intestine and the stomach. My understanding is she will be taking this medication for the rest of her life.
Sloan-Kettering article mentions another contraindication relevant to CC patients.
http://www.mskcc.org/cancer-care/herb/dandelionQuote:Patients with obstruction of the bile duct or gall bladder should not take dandelion.The reason for this warning: dandelion raises the production of bile in the liver.
This is great news indeed!
I wonder if the new bank will collect samples only from Massachusetts General patients. I hope they will cooperate with other hospitals, so the bank can grow as fast as possible.
Now that I thought about it a bit more… I agree with Lainy. If your in-laws are comfortable with the hospital and the surgeon, let them live with their decision. You are too close to surgery to try any last minute changes.
Think positive and hope for the best possible outcome.
Best of luck!
Stacy,
Here’s another issue you might want to discuss with your surgeon. The role played by pathologist who will be doing frozen section biopsies in the middle of the surgery.
This article explains how frozen section biopsy works:
http://jama.ama-assn.org/content/294/24/3200.full.pdfFrozen section biopsy is not very reliable, because the act of freezing changes the appearance of cancer cells. The pathologist can easily make a wrong call. “False positive” is not too bad… the surgeon will likely attempt to resect more tissue. “False negative” is potentially disastrous because the surgeon might stop too soon, leaving some cancer cells behind (a.k.a. positive margins).
So here’s what I would do:
Look your surgeon in the eye and ask him for a favor. Plead him to select the most experienced, skilled pathologist to work your FIL’s surgery. It is possible that your surgeon has no control over pathologist selection, or doesn’t know them well enough to select the best person. But it doesn’t hurt to ask.
FYI, my wife had a Whipple in July 2011. The pathologist who worked her surgery made a “false negative” call on the last frozen section. My wife ended up with positive margins. Not sure if another pathologist could have done a better job.
Hi Stacy,
The surgery is next Monday, so not much time left. I will mention this anyway…
As I’m sure you know by now, Whipple is a BIG surgery. One of the biggest surgeries a person can face. Surgeon’s experience matters *a lot*. You want to have a surgeon who has done at least 100 Whipples. The more the better.
So my suggestion would be to ask your surgeon directly: how many Whipples have you done in your career? If less than 100, I would think long and hard about finding a more experienced surgeon.
Best wishes,
EliAn article by Dr. David Servan-Schreiber, the author of the best-selling AntiCancer book.
How much green tea does it take for an anti-cancer effect?
http://anticancerbook.com/post/How-much-green-tea-does-it-take-for-an-anti-cancer-effect.htmlGrover, I’m curious, how many cycles of Gem/Cis did you complete?
Best of luck with the surgery and please keep us posted!!
Just want to point out that Platinol is another name for Cisplatin. In other words, Grover received the (near-)standard Gemcitabine/Cisplatin treatment.
Memorial Sloan-Kettering maintains a very helpful web site about alternative treatments. They have a page on HMB:
http://www.mskcc.org/cancer-care/herb/hmb
(You will have to accept a disclaimer before the page opens)
Each page has two tabs: one for healthcare professionals, another one for consumers. I always read both
Good luck whatever you decide to do with this info.
LeeAnn,
I’m guessing you had perihilar CC, a.k.a. Klatskin tumor. NCCN Guidelines view them as extrahepatic CC.
A quote from page MS-25 of the Guidelines:
Quote:In these Guidelines, extrahepatic cholangiocarcinomas include perihilar cholangiocarcinomas (also called Klatskin tumors) which occur at or near the junction of the right and left hepatic ducts…Based on this comment, I’m guessing you should be looking at slide EXTRA-2, which gives you 4 options. I understand that it’s not very helpful. You are right back at square one where you are not sure if you made the right choice. You might want to seek 2nd and 3rd opinions.
Ask your oncologists to review your post-surgery pathology report one more time. Ask them to look for risk factors *other* than positive margins and positive nodes. Two additional risk factors I’m aware of:
* perineural invasion (cancer cells invading the space surrounding nerves)
* poor cancer cell differentiation (differentiation refers to how different the tumor cells are from the cells from which they originated)I recall reading medical papers that linked these two factors with worse survival. If your pathology report mentions either one of these factors, ask your doctors whether you should give more serious consideration to chemoradiation or chemo.
Best wishes,
EliADDED: Government databases that track cancer statistics classify Klatskin tumors as intrahepatic CC. In the past, they used to classify them as extrahepatic CC. This change in classification created a lot of confusion. That said, NCCN Guidelines seem pretty clear. They put Klatskin tumors under extrahepatic CC.
Hi LeeAnn,
Congratulations on your clean surgery. That’s a great result! My wife had surgery too, but she ended up with positive margins and positive lymph nodes. So our decision was relatively easy… we decided to do both chemoradiation and chemo.
If you keep second-guessing your decision to skip chemo, I suggest that you take a look at NCCN Treatment Guidelines for Hepatobiliary Cancers. A group of cancers that includes cholangiocarcinoma.
http://www.nccn.org/professionals/physician_gls/pdf/hepatobiliary.pdf
You will need to register for a free account in order to access the document.
NCCN (National Comprehensive Cancer Network) is an alliance of 21 leading cancer centers. Includes hospitals like Sloan-Kettering, MD Anderson, Massachusetts General, John Hopkins, Barnes-Jewish, etc etc.
NCCN publishes treatment guidelines for all types of cancer. Think of guidelines as “the current standard of care” or “the current best practices”. They update the guidelines twice a year (I think), to incorporate the latest medical papers.
Back to the PDF…
If you have intrahepatic CC, take a look at slide INTRA-2. For clean resection (R0 margins), they recommend one of two options:
Observe (do nothing)
or
Clinical trialNote they don’t recommend conventional chemo.
If you have extrahepatic CC, take a look at slide EXTRA-2. For negative margins and negative lymph nodes, they recommend one of 4 options:
Observe (do nothing)
or
Fluoropyrimidine chemoradiation
or
Fluoropyrimidine or gemcitabine chemotherapy
or
Clinical trialYou mentioned someone told you that chemoradiation has to start 8 weeks after surgery and that timing was important. My opinion (and I’m not a doctor) is that timing is critical for someone with positive margins or/and positive lymph nodes. For someone like you – negative margins and negative nodes – the timing is less important. Again, this is just my opinion and I’m not a doctor.
Best wishes,
EliHi Jessica,
I will repeat what Marion and PCL1029 already told you. You need to establish whether a surgery is an option for your husband. That should be your goal #1 right now.
Re: seeing another doctor
I’m in Ottawa. My wife is being treated at The Ottawa Hospital, one of the largest hospitals in the country. I’m certain they see a higher volume of CC patients than hospital in Halifax. I know for a fact that some PEI patients come here for a consultation. If you decide to get a second opinion, Ottawa might be a good place to go.
I’m not sure how exactly to arrange the referral, but I guess you can approach it two ways.
1. Ask your PEI doctors about referral to Liver and Pancreas Unit at The Ottawa Hospital.
2. Call Liver and Pancreas Unit yourself and ask them about inter-provincial referrals. They might be able to give you some pointers. Here’s their phone number: (613) 761-5015
Any questions – feel free to email me through this web site (see button to the left).
Best wishes,
EliEDIT: Jessica, I missed your post where you mentioned second opinion in Toronto. It’s great that you are trying to arrange that. Is it Princess Margaret Hospital by any chance? I heard they are excellent.
Yeah, my recollection about S-1 could be wrong. I think it comes from this study:
Recent progress and limitations of chemotherapy for pancreatic and biliary tract cancers
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100481/Here’s what they say about S-1:
Quote:S-1 is an oral fluoropyrimidine, consisting of tegafur, a prodrug of 5-FU, and two bio-modulators, 5-chloro-2,4-dihydroxypyridine and potassium oxonate, which maintains high serum 5-fluorouracil levels and reduces gastrointestinal toxicity. S-1 has demonstrated efficacy in a variety of solid tumors, especially in Asian patients.The bolded part seems to suggest that S-1 is more effective in Asian patients. Doesn’t mean that it’s not effective in Western patients. It might be effective, just not to the same extent.
EDIT: Here’s a study that confirmed that the maximum dose of S-1 tolerated by Western patients is lower than the dose tolerated by Japanese patients.
http://jco.ascopubs.org/content/23/28/6957.full
