Topic: In Japan

Hi,

My mum passed away four months ago .  I'm still visiting the forum regularly . I read the posts and be happy if I hear any good news . My prayers are always with the people who fight against it .
Yesterday I visited my doctor for my annual control . When we were talking about my mum's case , he mentioned that there are really succesful studies in Japan about CC,Klatskin Tumor . Have you hear anything about it ?
I just wanted to share this with you .

Figen

Re: In Japan

I just started taking Lentinan, a Japanese pharmaceutical grade mushroom extract, along with Xeloda and the chinese medicine herbs I use.
I'll have blood work done later this month to check my CA19-9 levels in hopes that the mix is helping.  As in other countries my goal is to find what works for me as a patient.  Not to isolate each variable to be able to gain statistical data.
Lentinan has shown some good results in Japan with increasing quality of life and longevity.  Check PubMed for articles.  It is not legal in this country and I had to get special compassionate use from the gov't to have it imported.
I'd be most interested in other studies showing success with CC as would we all!!!!
-Peter

Re: In Japan

Peter,

Regarding the Chinese herbs that you take, have you ever had any problems with the quality of them?  I know that a few years ago, people were warned not to take them as the quality control isn't what it should be.  Did that situation change?

I'm thinking about consulting a person trained at the Pacific College of Oriental Medicine -- who is knowledgeable about acupuncture and traditional chinese medicine.  So I'm hoping that you'll have some insights to share.

Thanks,

G

Re: In Japan

My husband has been taking Maitake Mushroom D Fraction for months now.He is doing very well but I don't know whether it is the result of the mushrooms, diet etc. I guess time will tell as he is not receiving any chemo or other medical treatment at present.They are watching for any recurrence as his tumor has been reduced to the point of not being visible on Cat Scan or MRI. I do believe it has helped his immune system greatly because he has not had a sniffle, sore throat or anything and has been surrounded by sick people all winter.I credit the mushrooms for that. Also I started giving him milk thistle the past few weeks due to the fact that his Alkaline Phosphate levels have been high -most likely from damage caused by his extensive radiation treatments. His color improved almost overnight. Even though his bilirubin has been normal he still had a yellow appearance to his eyeballs and skin( that may be the carrot juice) but within days of starting milk thistle his eyes have cleared substantially and his skin is pinker. He will have bloodwork in a few weeks so I am very curious to see what that shows.  Mary

Re: In Japan

Mary

You mentioned that your husband's alkaline phophatase (ALP) levels were high and that you are treating this with milk thistle.  My own ALP is 173 u/L (don't knoiw whether these european units make any sense compared with US measurements) which on my blood results is labelled as high but my doctor says it's nothing to worry about.  I'd appreciate your comments on the implications of high ALP.

Geoff

Re: In Japan

Geoff,
   Our Drs. don't seem to worry either. His ALP levels have been very erratic. As I look through his bloodwork since June and see when it has gone the highest( up to 615) it seems to be when they have done certain procedures or when he has had infection. When he was first diagnosed his liver enzymes were normal and have gone up and down since he had his radiation and chemo treatments. By what I have read and what they say it can be caused by irritation, liver damage and even the healing process ( I can't think of the actual term right now) can cause elevations. What milk thistle does is help increase levels of gluthione, an enzyme necessary for liver regeneration. You can not take supplements of gluthione or eat foods to increase levels, I guess it doesn't work that way. Milk thistle has been shown to increase gluthione levels by up to 35%. My feeling with my husband is that he has had damage caused by the radiation he received and the different procedures they did in order to administer the radiation( drains etc.). My hope is that the milk thistle will help his liver heal and in turn cause his ALP to return to normal. He does not have any tumors in his liver and his Klatskin has shrunk or is dormant so I don't worry about that being the cause as much. His CA -19 was 235 in Jan but they claim that can even be elevated due to cholangitis which I believe my husband was suffering from at that time. He was having chills and fever about once a week.  Since they removed one stent and replaced the second a month ago he has not had any fever. Plus, as I said his color has improved markedly which I would think shows improved liver function.His other liver enzymes were almost normal when he had his last bloodwork three weeks ago. I will write after his next bloodwork in 2 weeks to let you know if his ALP level has fallen. He will have been on the milk thistle for one month. Take care.    Mary

Re: In Japan

G,  I have not had any quality problems with the chinese herbs after taking them for a few years now.
I know of the issues and decided early on that I would simply trust my practitioner and the vendor he has visited and has experience with.

Re: In Japan

Hi,

My best friend is having cholangiocarcinoma. It  has been confirmed  by doctor in Singapore Hospital and also Indonesia .. both has confirmed that the got Bile Duct Cancer in the middle of Duct/

I read the article from Peter Betts and i found it interesting .
http://www.cholangiocarcinoma.org/punbb … php?id=394

Anyway now i got Shiitake Mushroom from Canada by Biotic Research http://www.bioticsresearch.com/node/1620

Since my friend is going to take oral chemotherapy medicin (Xeloda) and i would likt to ask how many pils should he take at once... and it is 3 x a day ? In the box it does only say 1 to 4 pills per day.

Please help

9 (edited by PCL1029 Mon, 02 Jul 2012 07:42:15)

Re: In Japan

Hi,
I am just a patient,not a doctor.
How much he weight? And how tall is he.
Dose should be determined also by the kidney function.your oncologist should tell him the correct dose.
Normally it is 1000-1200mg/m2 (the body surface area square). Twice a day and take with food if it is mono therapy( that means he only takes Xeloda and no other chemotherapy.)
BTW, where you got your Xeloda?  Do you need a prescription to get that. The way you said about Xyloda is like you can get it as an OTC  product.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.