Eli
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This looks like a good overview of the anti-inflammatory diets:
Anti-inflammatory Diet: Road to Good Health? Experts discuss the potential disease-fighting benefits of diets that try to reduce inflammation.
http://www.webmd.com/food-recipes/features/anti-inflammatory-diet-road-to-good-health
The questions is, of course:
Can a patient do anything to reduce the level of inflammation in the body?
I know of two potential options.
1. Anti-inflammatory diet.
Google search brings back TONS of resources:
https://www.google.com/search?q=anti-inflammatory+diet2. Aspirin
Please please please tread very carefully!! Aspirin is not a harmless drug. It can cause serious gastric side effects such as ulcers and bleeding. Discuss it with your doctor. Our hospital specifically warned us not to take Aspirin during chemo.
My wife started taking low-dose Aspirin after she finished chemo. She has been taking it since May. So far so good – knock on wood! All of our doctors – surgeon, medical oncologist, radiation oncologist – gave us the blessing to take it. My wife combines Aspirin with Pantoprazole (Protonix) which she has to take anyway as a Whipple patient. Pantoprazole reduces the risk of GI side effects from Aspirin.
Again, please be VERY careful about Aspirin.
Percy, congratulations on the clean scan! I’m so happy for you. Wishing you many more clean scans for years to come!
Bruce, have you tried looking up medical articles on PubMed?
When I was in your position — i.e. before my wife started chemo/radiation — I spent countless hours on PubMed. It’s a treasure trove of information. Most articles are hidden behind a paywall, but the key statistics is usually summarized in the article Abstract. Quite a few articles are available in full text.
The key to searching PubMed is to repeat the same search using many different combinations and permutations of keywords. It helps if you know relevant MeSH terms:
http://www.nlm.nih.gov/mesh/meshhome.html
If you are technically inclined, you can learn PubMed query language. To give you a taste, here’s the query that I use to search newly published articles about CC:
cholangiocarcinoma OR (((bile duct) OR biliary OR hepatobiliary) AND (cancer OR neoplasm))
As to the spreadsheet that you proposed, it might be feasible to implement going forward. I very much doubt it’s doable looking back. The information is scattered around many many posts (at best), or is not available at all.
My wife, Marina, had her regular CT scan last Friday. We got the news today that the scan was clean! CA19-9 was normal too.
We are 16 months since resection and 18 months since Marina’s CC symptoms first showed up.
BTW, Marina is thinking about taking the port out. She hasn’t decided yet.
Hi Bruce,
Yes, ABC-02 is the code name of the Phase 3 study done in the UK. Here it is:
http://www.nejm.org/doi/full/10.1056/NEJMoa0908721
Note a couple of things:
1. The study found that GemCis extended survival compared to Gem alone. It did not prove that GemCis is better than any other double-agent chemo protocol such as GemOx or GemCap. GemCis became the unofficial standard of care because it’s the only protocol with a Phase 3 study behind it.
2. The study included patients with advanced disease (unresected or metastatic cases). The results of the study do not apply directly to the adjuvant setting (resected patients). Medical community extrapolates the results of ABC-02 to resected cases, but that’s really a leap of faith.
Hi Lynn,
What you described sounds similar to what my wife experienced after they put her port in. Her pain was quite strong in the first two days after operation. The pain got better after a couple of days. Still, she had some pain for about a week.
It’s been more than a year, so my memory is a bit foggy about the medications. I think she took Prescription Tylenol initially. Once her pain got better, she switched to extra-strength non-prescription Tylenol.
All that said…. I think you have to see a doctor if his condition doesn’t improve soon.
Best wishes,
EliMy wife doesn’t take Creon even though she had Whipple. Her surgeon was adamant that she doesn’t need it. He said the remaining part of her pancreas can produce enough enzymes on its own. I think he was right; Marina didn’t have any digestive issues in the first 2 months after Whipple. Her digestion got messed up later on, when she started chemoradiation. She actually tried Creon for a week or so during radiation. She thought it made her diarrhea worse, so she dropped it and never touched it again.
My understanding is that Creon packs a very large dose of pancreatic enzymes. You can get a much smaller dose of the same enzymes over the counter without prescription. Marina took OTC enzymes in the month before Whipple, while she was stented.
BTW, Marina follows a very low-fat diet. That might explain why she doesn’t need extra enzymes. She had trouble digesting fats her entire life, so low fat diet is a like a second nature to her.
Not sure if I said anything helpful, so I better stop rambling.
Luvdawoods2,
I would wait for EUS results tomorrow, and then go from there depending on what EUS shows.
In my wife’s case, EUS was the final test that sealed the decision to operate. The doctor who did EUS was very confident that bile duct blockage was caused by cancer. The full pathology report done after the surgery confirmed that he was right.
Prior to EUS, my wife had ERCP with brushings, CT and MRCP. Brushings came back suspicious for adenocarcinoma. They found abnormal cells but no actual cancer cells. CT and MRCP were inconclusive as well. They didn’t show any mass around the bile duct.
Best wishes,
EliBruce,
Genetic mutations in CC are poorly researched. I’m not aware of a “master list” of mutations that contains all of them. At present, most clinical decisions are NOT driven by genetics.
CC patients typically receive one of the mainstream chemo protocols, such as Gem/Cis, Gem/Ox, Gem/Cap, etc. Currently there is no reliable way to determine which protocol is the best for the given patient.
Hi Bruce,
2000miler wrote:I checked the NCCN Guidelines Version 2.2012, Extra-2. It states “Consider fluoropyrimidine chemoradiation {f} (brachytherapy or external beam) followed by additional fluoropyrimidine or gemcitabine chemotherapy or Fluoropyrimidine based or gemcitabine based chemotherapy for positive regional lymph nodes {h}” I don’t know how to interpret that statement. Does consider apply to both part.In my (non-expert) opinion, consider applies to both parts.
Chemoradiation is used to treat positive margins and regional lymph nodes. Chemo is used to treat distant spread. Both treatments lack solid statistical evidence provided by Phase 3 clinical trials. Therefore, they have to use weasel words like “consider”.
2000miler wrote:The paper you linked to, “Adjuvant treatment in biliary tract cancer: To treat or not to treat?” states the following under Guidelines and Current Clinical Practice. “The National Comprehensive Cancer Network (NCCN) guidelines recommend only observation or adjuvant CRT with concomitant fluoropyrimidine for patients with R0 margins or negative lymph nodes and adjuvant therapy with concurrent 5-fluorouracil-based CRT followed or not by additional fluoropyrimidine or gemcitabin-based regimens in patients with R1 margins or metastic lymph nodes.” So it appears here that the NCCN is recommending CRT with or without chemo for positive lymph nodes.The paper is written by Italian doctors. Italy has a strong expertise in treating cholangiocarcinoma. However, I wouldn’t necessarily rely on their interpretation of NCCN guidelines. They may be missing some nuances of the English language. (The rest of the paper is still valuable for its discussion of adjuvant therapies)
Did you have a chance to read the second paper I linked?
Adjuvant Therapy Beneficial in High-Risk Biliary Tract Tumors: Meta-Analysis
http://www.medscape.com/viewarticle/762919They reviewed a very large sample of patients from numerous previous trials. You may need to register for a free Medscape account to read it.
2000miler wrote:Also, it appears that the recommendation is to do radiation followed by chemo, whereas what the Ocshner oncologist proposes is to do chemo followed by radiation.There is no definitive standard.
My wife did chemoradiation followed by 6 cycles of chemo. FYI, she had R1 margins and 2 positive nodes after Whipple resection of extrahepatic CC.
Susie did 3 cycles of chemo, followed by radiation, followed by another 3 cycles of chemo.
Derin (another one of our members) did chemo followed by radiation.
