Eli
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Thank you all for your kind words. I am so grateful to have your support.
My very best wishes to everyone on this site. I hope that many, many more of our members will be able to post in the good news section.
Hugs,
EliHi Patti,
Welcome to the forum (but sorry that you had to find us).
Your husband’s case sounds very similar to my wife’s, except she is much younger. She was diagnosed last year at age 44. Her tumor was in the distal portion of the common bile duct, inside pancreas head. Your husband’s tumor seems to be in the same spot. My wife’s ERCP biopsy was inconclusive too. They found atypical cells that looked suspicious for adenocarcinoma, but no actual cancer cells.
The doctor who did EUS told me this: “I’m pretty certain your wife has CC. Even if I’m wrong, you don’t want to take any chances.”
That sealed the deal for us. We called the surgeons and scheduled the resection, even though we didn’t have a definitive diagnosis. The CC diagnosis was confirmed by the final pathology report that we received two weeks *after* the surgery.
As Lainy mentioned, Whipple is not a life threatening surgery. That said, it is a BIG surgery. It carries a risk of pretty significant complications. It’s very important that your husband’s surgeon has a lot of experience doing Whipples. Ideally, you want to find a surgeon who has done 100+ Whipples in their career. The more experience they have, the better your chances are for an uneventful recovery.
Best wishes,
EliPamela,
I am very sorry to hear your news. Please stay strong and keep up the fighting attitude. I hope that Xeloda and Oxaliplatin work wonders for Lauren.
My best wishes to you and Lauren. You two are always in my thoughts.
Hugs,
EliJim, welcome to the forum.
I’m sure your doctors mentioned this, but I will say it anyway. Inconclusive biopsies are very common. A positive biopsy is not required to establish the diagnosis. The doctors can diagnose CC based on other tests: ERCP, CT, MRI (MRCP), PET, Endoscopic Ultrasound, tumor markers, etc. That said, a positive biopsy is very beneficial to have. It gives more confidence to the patient and the family that CC diagnosis is the right one.
Best wishes,
EliMyMomMyLife,
Try amazon.com for medical supplies. I just did a search for “paper medical tape” in the Health & Personal Care department. Got back over 500 items.
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Dhpc&field-keywords=paper+medical+tape
Some of those prices look pretty good to me. Especially on the bulk packages.
Best wishes,
EliHi Percy,
You mentioned that you take Yunzhi extract. Wikipedia says that Yunzhi is Chinese name of Trametes versicolor mushroom. The same mushroom is also known as Coriolus versicolor, or Polyporus versicolor, or Turkey Tail. American Cancer Society has a page about this mushroom:
Here’s the part that caught my attention:
Quote:In the 1980s, the Japanese government approved the use of PSK for treating several types of cancer. In Japan, PSK is a best-selling anti-cancer drug where it is currently used as a cancer treatment along with surgery, chemotherapy, and radiation therapy.PSK refers to the substance extracted from this mushroom.
This mushroom is interesting… thanks for mentioning!
Eli
Hi Susie,
I want to respond to what you wrote:
Quote:So, do I want to take them or not? I’m leaning on taking them because here are my thoughts. There has to be some type of underlying issue in my body that allowed this cancer to grow that hasn’t been dealt with. I had the tumor removed, had chemo and radiation, all which focused on killing the tumor, not with fixing whatever problem caused it to grow. So, if the problem isn’t fixed, why wouldn’t it grow back?Cancer is far more random than you give it credit. It may very well be that your body does NOT have any underlying issue that allowed your cancer to grow. It may be just bad luck. I have read that every single human being, and I mean EVERY SINGLE ONE, carries multiple gene mutations that may potentially lead to cancer. Most people don’t develop cancer because we have a defense system to keep the unhealthy cells in check. But no defense system is perfect. Sometimes the defense fails for some purely random reason.
You called supplements “the stupid things”. It’s obvious that you feel uneasy about taking them. I think you should think about supplements some more. Don’t pressure yourself into doing something you are not comfortable with.
Take care,
EliPopulation of Arizona in 2011: 6,482,505
Source: Wikipedia
http://en.wikipedia.org/wiki/Arizona#DemographicsNew cancer cases in Arizona, 2012 estimate: 31,990
Source: American Cancer Society
http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf31,990 / 6,482,505 = 0.004934821
Or, in other words:
Incidence rate of cancer in Arizona is 493 new cancer cases per year per 100,000 of population.
Population of Sedona in 2010: 10,031
Source: Wikipedia
http://en.wikipedia.org/wiki/SedonaIf we take Arizona cancer rate and apply it to Sedona, Sedona is expected to have this many new cancer cases each and every year:
10,031 * 0.004934821 = 49.5
Kristin, my question to you is this:
What is the actual number of new cancer cases diagnosed in town each year? Is it much higher than the estimate I gave you? If the actual number is close to the estimate, it means that your town is doing no worse than the state as a whole.
Percy, thanks for your kind words. My wife is going for a CT scan tomorrow. See my post in the general section. That’s all I’m going to say right now.
Environmental Protection Agency information on DCA toxicity:
http://www.epa.gov/NCEA/iris/subst/0654.htm
Again, anyone contemplating DCA therapy should read the entire EPA page very carefully.
One quote for now:
Quote:II.A. Evidence for Human CarcinogenicityII.A.1. Weight-of-Evidence Characterization
EPA finds there are no data on humans indicating that DCA is a carcinogen. However, there is sufficient evidence to conclude that DCA is carcinogenic in at least two species of experimental animals. A statistically significant and dose-related incidence of hepatocellular adenomas and carcinomas occur in male and female mice, and male rats. Large foci of cellular alteration (LFCA, formerly called hyperplastic nodules), which are expected to progress into hepatocellular adenomas and carcinomas, increased in rats and mice. Additional support is provided by: (1) the number of independent studies reporting consistently positive results and at roughly comparable doses, (2) site concordance for tumor formation between two species, (3) clear evidence of a dose-response relationship for tumor incidence and multiplicity, and (4) apparent development of tumors from more than one hepatic cell line and no clear data supporting a cohesive mode of action. Therefore, EPA believes that DCA is likely to be a carcinogen in humans.
Thanks, Percy.
Bill’s success story sounds very positive about DCA. To provide some balance, I will post the negatives.
American Cancer Society has a very informative page about DCA:
Anyone contemplating DCA therapy should read the entire page very carefully. But this one section in particular:
Quote:Are there any possible problems or complications?This substance may not have been thoroughly tested to find out how it interacts with medicines, foods, herbs, or supplements. Even though some reports of interactions and harmful effects may be published, full studies of interactions and effects are not often available. Because of these limitations, any information on ill effects and interactions below should be considered incomplete.
Some studies of people who took DCA for reasons other than cancer have found that it may cause drowsiness, fatigue, upset stomach, and lowered blood sugar levels. Some people had changes in their blood chemistry over time that suggested that their livers may have been affected. Liver function seemed to improve after DCA was stopped.
DCA may cause nerve damage in some people when taken for a long time (months or years) and can result in weakness and numbness in the arms and legs. This can lead to trouble walking. These nerve effects tend to get better over a period of weeks after the DCA is stopped. This effect has happened even in people who were taking thiamine (vitamin B1) to help prevent nerve damage.
In mice and rats that were given high doses, the effect on the nerves did not get better after DCA was stopped. Liver damage was also seen at high doses. Dogs that got higher doses had eye problems, trouble walking, and trouble breathing; some had diarrhea and weight loss. DCA causes liver cancer in lab rodents when put in their drinking water. Keep in mind, though, that drugs do not always affect people and animals in the same way. It is hard to say without further testing which of these effects might also happen in people, and whether higher DCA doses might cause permanent damage.
People who are very sick do not process the drug as quickly as those who are healthier, so that people with health problems may build up toxic amounts of DCA over time.
Women who are pregnant or breastfeeding should not use DCA. People who are getting other cancer treatment with similar side effects (such as liver or nerve damage) might expect to have these effects worsened. Anyone who is taking DCA should be under a doctor’s care to watch for liver damage and problems with blood chemistry that may result.
It is not clear if DCA might also affect a person’s risk for getting a new cancer. The US Environmental Protection Agency (EPA) has listed dichloroacetic acid as “likely” to be a cancer-causing agent in humans, although this is based mainly on studies in animals. Dichloroacetic acid is also on the California Environmental Protection Agency (CalEPA) list as a cancer-causing agent and as a cause of reproductive harm in men. The International Agency for Research on Cancer (IARC) does not have enough studies on people to be sure, but based on the evidence that is now available, says that dichloroacetic acid can “possibly” cause cancer in humans.
Relying on this type of treatment alone and avoiding or delaying standard care for cancer may have serious health consequences.
hl24… welcome to the forum. Just want to confirm what the others have said. A positive biopsy is not required to establish the diagnosis. It’s very common for the brushing biopsy to be inconclusive, because it collects only a very small amount of tissue. My wife’s biopsy came back as “suspicious for adenocarcinoma”, so it wasn’t a definitive result. The doctors recommended surgery anyway, based on all other tests they did (ERCP, CT, MRI, endoscopic ultrasound). They gave us the odds: 90%-95% chance that it was CC, 5%-10% chance that it was something else. The definitive diagnosis was established after the surgery, when they did the full pathology exam of the tumor.
Percy, thanks for your suggestion. I copied my post to the DCA thread in the CAM section:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7284
Lisa, I missed the second part of your question. You asked if anyone is familiar with Bill’s story or DCA. Follow the link above to read more about DCA. You will find lots of information there.
Lisa posted a question about DCA success story in another thread:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8513
Here’s what Lisa wrote:
Quote:My husband found a gentleman that was diagnosed in 2008 with cc, he went on DCA and his last posting showed his cat scans with no evidence of cc. They do not put their last name, we are trying to validate if this is real or not. Is anyone familiar with this story or DCA ?I’m copying my reply to Lisa here, so it doesn’t get lost.
Hi Lisa,I emailed Bill and Shirley about a month ago after finding this page:
http://thedcasite.com/Bile_duct_cancer.html
They replied and offered to talk to me on the phone. I called and talked to both of them. They were very patient and answered all of my questions. I truly believe the story is very real.
The web page on thedcasite.com is a bit convoluted. Here’s his story as I understand it.
Bill and Shirley live in British Columbia, Canada. Bill is a veterinarian surgeon. He had a Whipple for extrahepatic CC in 2005. His cancer came back 18 months later in 2007. He started Gemcitabine chemo, but his oncologist told him it’s for palliation only. Given the grim prognosis, he decided to give DCA a try. He took DCA at the same time as chemo. He stopped chemo after a while because he could not tolerate Gemcitabine. He continued to take DCA. Even though he stopped chemo, his cancer went back into remission, confirmed by the scans. His cancer remains in remission to this day. He attributes it entirely to DCA.
His initial dose of DCA was 15mg per kilogram of body weight. After a month or so, it caused some neuropathy side effects. Shaking hands, twitching eyes, and so on. Bill took a break from DCA. The side effects cleared after a week or so.
He resumed smaller dose of DCA, 12 mg per kilogram of body weight. This smaller dose caused the same neuropathy side effects. He took another break and again, the side effects went away.
He reduced DCA dose one more time, to 10 mg per kilogram of body weight. He has been taking this dose for almost 5 years, without any side effects.
He takes DCA on a two week cycle. 5 days on, 9 days off.
He buys DCA as a powder. He dissolves his daily dose in 600cc of water. He drinks 200cc with food 3 times a day.
thedcasite.com recommends that DCA should be taken with caffeine and vitamin B1. Bill gets his caffeine from green tea. He drinks a lot of it. He does not take vitamin B1 separately; he takes multivitamin that includes some vitamin Bs.
It’s a very interesting story. As I said, I exchanged emails and talked on the phone with him and his wife. I truly believe the story is true.
