Eli
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I agree with Lainy… 8 months is way too long to diagnose this. I wonder how much experience your doctors have in treating CC.
Just for the reference:
My wife went to ER on April 18th. On June 1st we had a firm recommendation to proceed with Whipple. So it took us 6 weeks to go from initial symptom presentation to the diagnosis. The investigation was done by a group of surgeons who specialize in liver and bile duct surgeries. They do Whipples all the time. By the way, our hospital wasted some precious time. I think they could have completed the investigation in shorter time.
CC is rare and hard to diagnose. Many hospitals don’t have enough experience to treat it. The best place to get treatment is a high-volume center that sees large number of CC patients every year.
Here’s one of the papers I read before we agreed to do Whipple.
Surgical strategy for bile duct cancer: Advances and current limitations
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/Section “PREOPERATIVE EVALUATION OF BILE DUCT CANCER” describes various diagnostic tests the doctors can use to figure out if the stricture is cancerous or benign. At the end of the section, they say this:
Quote:In the absence of other explainable causes of biliary strictures, patients should be assumed to have cancer and operated on as such, accepting that 10% to 15% might prove to have a benign lesion on the final histologic investigation.Our surgeons told us the same thing.
Hi VirginiaGal,
Welcome to the forum and sorry that you had to find us. What you are going through now is very similar to what my wife and I went through last year. My wife is the one with cholangiocarcinoma. She had a stricture in the common bile duct. She got ERCP done to put in a stent. The doctor did the brushings of the stricture. The biopsy of the brushings came back as suspicious for cancer. The ERCP was followed by CT scan, MRI scan and Endoscopic Ultrasound (EUS). The doctor who did EUS also took needle biopsy of the lymph nodes. The biopsy of the nodes came back negative.
The surgeons said that all diagnostic tests pointed to extrahepatic cholangiocarcinoma. However, they could not diagnose cancer with 100% certainty before surgery. The surgeons recommended Whipple. They warned us about a small chance that the stricture could end up being benign. One surgeon estimated the chance of it being benign as 10%. Another surgeon estimated it as 3%.
I read tons of medical papers before we agreed to do Whipple. Every single paper confirmed what surgeons had told us. Whipple is the only way to rule out cancer with 100% certainty. Non-invasive tests cannot do it. So we agreed to do Whipple. The post-surgery pathology report confirmed extrahepatic cholangiocarcinoma.
EDIT:
When you said that stricture brushings came back as ‘inclusive’, did you mean to say inconclusive (lacking clear answer)? This is very typical for brushing biopsy. The brushings pick up a tiny amount of tissue. If this tiny amount of tissue does not contain any cancer cells, the doctors cannot confirm or rule out cancer.
Hi Jose,
About odd ideas:
As mentioned by Julia and Lainy, chemo drugs and steroids can play nasty games with the brain. In addition to that, check the side effects of anti-nausea or anti-anxiety drugs your sister takes. The following drugs are commonly prescribed to chemo patients:
Compazine (Prochlorperazine) anti-nausea
Reglan (Metoclopramide) anti-nausea
Ativan (Lorazepam) anti-anxietyThese drugs may all cause mental or mood changes.
Best wishes,
EliGoodheartedmommy, I am sorry. Abandoned surgery is a devastating event. I didn’t mean to downplay the frequency with which it happens.
Matt wrote:– cause? genetic or hereditary factors?In the mast majority of patients, the cause is unknown.
CC has the following risk factors:
General
Age >65 years
Obesity
DiabetesInflammatory Diseases
Primary sclerosing cholangitis
Hepatolithiasis (oriental cholangiohepatitis)
Biliary tract stone disease
Biliary-enteric anastomosis
Liver cirrhosisInfectious Diseases
Opisthorchis viverrini (liver flukes)
Clonorchis sinensis (liver flukes)
Hepatitis C
Hepatitis B
HIVDrugs, Toxins or Chemicals
Alcohol
Smoking
Thorotrast
Dioxin
Vinyl chloride
Nitrosamines
Asbestos
Oral contraceptive pills
IsoniazidCongenital
Choledochal cysts
Caroli’s disease
Congenital hepatic fibrosisMany patients have what doctors call “sporadic” disease: they develop cancer even though they don’t have any of the known risk factors.
A few hereditary genetic disorders are known to increase CC risk. However, they are very rare.
Matt wrote:– why some say chemo is not effective, while others say it is?Genetic mutations vary from patient to patient. Each tumor is somewhat unique. Some patients have an excellent response to chemo. Others do not.
Matt wrote:– how often people go in for surgery after scans have shown only a small tumor, only to find out it has spread to other organs or other parts of the liver?I’ve been on this board for almost a year. I recall only one such case.
Matt wrote:– recurrence after successful resection?Unfortunately, recurrence after surgery is common. One of the reasons why CC is so hard to cure.
Matt,
You are an awesome advocate for your sister. Going to Mayo is absolutely the right thing to do. It’s a big, complicated surgery. It’s really important to get it done at a high-volume center, by a surgeon with 10+ years of experience and 100+ surgeries of the same kind under his/her belt.
Best wishes,
EliNew York Times article about experimental drugs that try to interfere with glucose metabolism in cancer cells. DCA is one of the drugs mentioned.
Fuel Lines of Tumors Are New Target
http://www.nytimes.com/2010/11/30/health/30cancer.html?_r=2&hp=&pagewanted=allSome additional information for those interested in DCA:
The Official University of Alberta DCA Website
http://www.dca.med.ualberta.ca/Home/index.cfmFollow the links on the left hand side:
News and Updates
FAQ’s
MediaWe discussed DCA before. It has some promise, but it’s far from being a cure.
See the most recent thread on DCA:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7284Hi Jose
Yes, it happens. Read Grover’s story. Grover’s tumor was nonresectable in June 2011. Grover did chemo from June to January. His tumor shrunk enough that Grover was able to have surgery on March 1st.
All threads started by Grover, The Miracle Man:
http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_topics&user_id=8727Think positive and keep hope!
Hi SweetGreen,
Here’s another clinical trial you might want to discuss with your doctor:
Hyperthermia/Thermal Therapy With Chemotherapy to Treat Inoperable or Metastatic Tumors
http://clinicaltrials.gov/ct2/show/NCT00178698?term=Hyperthermia&recr=Open&cond=cancer&rank=1
The treatment combines chemo with raising patient’s body temperature to a fever-like level (hypothermia). The goal is similar to fasting: create “stress” conditions for cancer cells.
I’m not sure if you heard about “Lance Armstrong effect”. Lance Armstrong had metastatic testicular cancer. His cancer was unexpectedly cured by chemo. Apparently the same result was achieved in other patients with metastatic testicular cancer.
One of the theories to explain “Lance Armstrong effect” goes like this:
Testicular cancer cells develop in a cooler environment because male testes sit outside the whole body. When testicular cancer cells metastasize to the whole body, they find themselves in a hotter environment they are not used to. The heat creates stress conditions, making chemo more effective.
Note that this is just a theory. The linked clinical trial tries to test this theory in other types of cancers.
I found the trial by searching active trials for extrahepatic CC. The description of the trial does not mention CC as eligible. They do mention gastric cancers.
I saw this study. It’s a mice study. No evidence that fasting works in humans. The article that you linked talks about it at length.
I mentioned this study to my wife and asked her (half-jokingly) if she would be willing to try fasting. She didn’t show any enthusiasm for it. That was the end of it.
Important quote from the article:
Quote:“if you do [fasting] without the science, you can end up doing more damage than good.” For example, when a fast is too long the immune system starts to suffer, potentially leaving a patient even less protected.My wife also receives IV of Zofran and Decadron (steroid) before chemo. We got clear instructions to take Zofran pills as per schedule in my previous message, in addition to IV. Compazine as needed between Zofran.
That said, you have to follow the instructions given to you by your doctor or nurse. NOT what you read here.
My wife takes extra-strength Tylenol for headaches caused by chemo. She takes the first Tylenol pill 30 minutes *before* chemo, because she knows that headache is coming.
Sorry, I don’t know if Compazine helps with headache.
Lorraine,
My wife does the same chemo, Gemzar / Cisplatin. She has prescriptions for the same medications you mentioned.
She takes Zofran after each chemo session:
* One pill in the evening the day of the chemo.
* Two pills (morning/evening) on days 2 and 3.
* One pill in the morning on day 4.
So, six pills in total after each chemo session.Zofran did a good job of controlling nausea in the first 3 cycles. My wife didn’t need to take anything else for nausea. The main side-effect from Zofran is constipation.
Zofran alone could not control nausea in the last cycle (#4). My wife took Compazine during the day in between Zofran.
We have Reglan but she never took it.
IMPORTANT: You must not take Compazine and Reglan together. If taken together, they may cause serious permanent condition called tardive dyskinesia. It affects facial muscles and may result in uncontrollable lip smacking, chewing, puckering of the mouth, frowning or scowling, sticking out the tongue, blinking and moving the eye, and shaking of the arms and/or legs.
My understanding is that Compazine and Reglan are similar medications. You take either/or, but not both!!
My wife was prescribed Lorazepam as anti-anxiety medication, to help with her sleep. Not as anti-nausea medication. She took it for a while and then discontinued due to side-effects.
