Eli
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Hi Lisa,
I emailed them 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 bode 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.
Marion, thank you so much again. Tissue collection, tissue banking and tissue availability are hugely important. We are indeed fortunate to witness the advancements made in these areas.
Hi Richard,
After my wife’s Whipple, the surgeons told her not to lift anything heavier than 10 lbs. She diligently followed the instructions but she developed hernia anyway. My understanding is, hernias are very common after Whipple.
My wife’s hernia is huge. She looks like she is a few months pregnant. She wears abdominal binder to support it. It’s very uncomfortable to say the least. The good news is, it doesn’t cause any pain.
Hernia repair surgery is a relatively simple surgery. Nothing compared to Whipple. The risks come afterwards. To repair hernia, they put a synthetic surgical mesh behind the abdominal muscle wall. This surgical mesh does NOT dissolve. It stays there permanently and may cause a number of potential problems.
In some patients, it causes chronic pain. I don’t know what percentage of patients. I told my wife that, no matter how small the risk is, she should not take it. Uncomfortable hernia is tolerable; chronic pain and painkillers are not acceptable.
Another issue is, it’s not uncommon for hernias to come back. If and when they come back, they can be a big mess. Much bigger mess than the original hernia. The body forms scar tissue around the surgical mesh. If hernia comes back, the surgeon can’t simply take out the old mesh and put a new one. They have to deal with scars.
One more concern… surgical mesh is a foreign object in the body. Immune system reacts to it. I remember a post from a forum member who had enlarged lymph nodes after her hernia repair. The catch is, the enlarged lymph nodes can also be a sign of the cancer coming back. Her doctors couldn’t figure out what it was by looking at the scans. She had to do a biopsy of the nodes to figure it out. I told my wife she doesn’t need this extra stress.
Given all these risks, we decided to wait and see. If the hernia stays pain-free, there is no rush to do anything.
Please note, I’m not a doctor. This is not an expert opinion. I might be blowing these issues out of proportion. You have to discuss the risks with your wife’s doctors.
Good luck making the right decision!
Marion, thank you so much for the very thorough reply about cell contamination issue. It is very, very informative. I’m glad to hear it’s a hot topic at the medical conferences you attend. Medical research community has to make it a top priority to address this problem.
Hi Susie,
That’s very interesting. Thank you so much for posting.
I wonder what was in the mushroom mix that he recommended. Any of these?
Agaricus blazei
Chaga
Cordyceps
Coriolus
Lion’s Mane
Maitake
Reishi
Shiitake
TremellaMy wife tried Melatonin when she had trouble sleeping during her treatments. She took it for a while and then stopped, because it caused drowsiness and headaches in the morning. I think she took the same dose, 20mg at night.
I think you are right to wonder about the hormone effects of melatonin. Take a look at Sloan-Kettering page on Melatonin:
http://www.mskcc.org/cancer-care/herb/melatonin
The professional tab contains this warning:
Quote:Because melatonin can alter levels of estrogen, patients with hormone sensitive cancer should consult their physicians before considering melatonin supplementation.I remember reading medical studies saying that CC is estrogen-sensitive. If I recall correctly, these studies claimed two things. One, estrogen levels are increased in CC patients including males. Two, estrogen seems to promote CC growth (but that’s just a theory and not proven 100%).
The question is, does Melatonin increase or decrease levels of Estrogen???
It’s all very confusing, isn’t it?
Hi Kendra,
You asked: how long was your battle prior to being cancer free?
The truth of the matter is, the road to being cancer free lies through surgery. I went back and read all of your previous messages. You didn’t mention surgery once. Am I correct to assume that your boyfriend was deemed inoperable by his hospital? I’m also wondering, have you sought a second or third opinion about surgery?
I found this clinical trial at the University of Utah:
Liver Transplantation for Cholangiocarcinoma
http://clinicaltrials.gov/ct2/show/study/NCT00708877They accepted patients with some lymph node metastasis:
Quote:Patients with extrahepatic metastases, local spread of disease to adjacent organs, and N2 nodal disease (metastasis to peripancreatic, periduodenal, periportal, celiac, superior mesenteric, and / or posterior pancreaticoduodenal nodes) will be excluded as will patients with extension of tumor into the main portal vein. Patients with N1 disease (metastasis to lymph nodes within hepatoduodenal ligament) will remain eligible for the protocol.That was actually part of the trial. It’s not a standard protocol.
Hi Tiff,
I started reading about supplements when my wife got diagnosed. It’s been more than a year. Let me tell you… my head is spinning. For any given supplement, a can find a few medical studies that directly contradict each other. One study says that a supplement is safe and that it shows some anticancer activity. Another study says that the supplement is not safe or that it’s doesn’t have any anticancer benefits.
I have about a gazillion bookmarks on supplements, but this is the best resource by far:
Memorial Sloan-Kettering web site About Herbs, Botanicals & Other Products
http://www.mskcc.org/cancer-care/integrative-medicine/about-herbsEach supplement has its own page with two tabs: one for Healthcare Professional, another one for Consumer. For example, here’s the page on Vitamin
Consumer tab is the one you want to read. Healthcare Professional tab has a lot more details, but the medical mumbo-jumbo can be a bit of a challenge to wade through.
Finally, my advice to you: tread very carefully. Talk to Dr.Javle or ask questions here before you start taking any new supplements.
My wife is one year post-Whipple and she is on a 3 months schedule for everything: CT scan, blood work, oncologist. She is a high risk to relapse due to microscopically positive margins and two positive lymph nodes, so we are sticking to the 3 month schedule for now.
She has a huge incisional hernia too. It doesn’t cause any pain, so we are taking wait and see approach. Hernia repair surgery is not without risks.
Pam, I am with others who say hang in there and wait for the MRI results. It doesn’t have to be a new tumor. Theraspheres have side effects like any other treatment. Let’s hope and pray that’s what it is.
Yes, it’s possible. All patients in a clinical trial have to follow the same treatment protocol. The breaks from the chemo might be allowed, but extra drugs like Neupogen or Neulasta might be not.
Another consideration is safety. If the chemo drug is new, they might be concerned about unknown drug interactions.
Of course, this is just speculation on my part. Ask them to explain what’s going on.
Ask your oncologist about Neupogen or Neulasta. Both are used to treat neutropenia. Neupogen requires more frequent shots. Neulasta is similar to Neupogen but lasts longer, so the patient doesn’t need as many shots.
My wife’s ANC dropped too low after the first cycle of Gem/Cis. She did Neupogen shots for the remainder of her chemo.
(To be honest, I’m very surprised the hospital turned your husband away without mentioning these medications)
Marion,
While we are on the subject of research funding by the foundation, I want to bring this article to your attention:
http://www.sciencedaily.com/releases/2012/06/120621102056.htm
I was very upset when I read the article, but that’s not the point.
This paragraph got me thinking:
Quote:“In the past, the technology to check cell lines didn’t exist and so you can’t really blame past researchers. But today it’s cheap, it’s easy and the technology is widely available. There’s no excuse to experiment on cells without first discovering what you’re experimenting on. We’ve suggested that journals start requiring verification of cell lines as a prerequisite of publishing,” says Andrew Bradford, PhD, CU Cancer Center investigator and associate professor in the CU School of MedicineThe bold font is mine. I wonder if CCF should start requiring the same as a prerequisite for research funding? I understand that imposing such a requirement would be rather controversial. I see some pros as well as some cons.
Hi Kendra,
Of course we all heard about liver flukes! They are the #1 cause of CC in the South Asia countries like Thailand, because people there eat raw fish on a regular basis. If your BF didn’t eat any raw fish while in Malaysia, his CC is probably not related to liver flukes. If want to know for sure, ask your doctors for a stool cultures test. The test should be able to detect the liver flukes if he is infected.
We had a few older members who had been in the army and had served in Vietnam or Korea. They or their loved ones wondered if their CC was caused by liver flukes. It’s very hard to prove after so many years. We also had a few younger members who, like your BF, traveled to South Asia. They wondered the same thing.
By the way, liver flukes are also present in the Western countries. The big difference is, Western people typically don’t eat raw fish. That’s why CC is not as common in the West as it is in Asia.
Best wishes,
Eli
