Please help, My dad (intrahepatic CCA)

I am new to this group. I copied and pasted a email I sent regarding my precious dad instead of retyping our journey with resectable Intrahepatic CCA. My question is: Anyone here have a similar story and decided not to take chemo but to drastically change ones diet, taking suppliments, herbs or anytime of natural treatment and have had success. Please help.

My Dad Ken, (age 61) has had Primary Primary Sclerosing Cholangitis “PSC” for about 15 years, a rare liver disease with no known cause and no cure or treatment with a need for a transplant averaging 10-15 years after diagnosis.

All of this took place in August 2009. This past week my Dad went to Mayo for his yearly check up. His blood test (specifically the C19-9 a tumor marker) came back at over 2,500 which called for an immediate MRI looking for cancer. They found a large tumor in my Dads liver about 5 cm long.

My dad met with the surgeon at Mayo Clinic today who feels they can remove the tumor but is concerned that they see something else on the other side of the liver (but could just be blood etc). If the surgeon sees more than what is shown on the MRI or see the other side of the liver is unhealthy, they will close my dad up because with the current tumor and the size of it, they already have to remove about 40% of his liver a very serious surgery. The surgeon said, that is all he can do at this point and told my Dad he should have it done right away. It seems like a fast growing cancer. His test came back fine in Jan. The doctor said that if his liver is healthy it should grow back. It appeared to be healthy, kind of strange after having PSC for about 15 years. After removed, he will have to have chemo/radiation. Sadly, normally he would have been a great candidate for a liver transplant but because of his specific cancer (in the liver) any liver would be rejected.

The surgery is scheduled for early morning this Tuesday the 4th at Mayo Clinic – MN. My dad could not ask for a better PSC doctor and liver surgeon.

I am praising God that my Dads surgery was successful removing the cancer in the liver and 2 nearby lymph noids. Since the cancer did spread to the lymph noids, they are strongly recommending 6 months of chemo starting in a couple of weeks to have a better chance of killing any cancer cells that might have moved from the lymph node somewhere else (an extra precaution). The surgeon believes he was able to remove all the cancer (which they now know now was malignant) but you never know with the lymph noids. His blood tests looked great after the surgery unlike before. My dad is blessed that the surgeon was even able to remove the cancer due to where it was and size of the tumor as the surgeon did not know for sure prior. What a miracle!

My dad is not sure what to do since chemo and some risks involved will not be good for his liver disease but may be necessary. If anyone happens to know anyone that has had chemo and/or any successful alternative treatments, please share them.

Today, March 10, 2010. My dad has decided not to take chemo yet. He has a wonderful ongologist that told it was up to him. He said, if we do chemo, we might not know what a normal tumor marker is for you. So they have been checking his markers every 30 days. His tumor markers after the surgery were 45 (twice) 2 months in a row but continue to climb. This is concerning for all of us. Last tumor marker this month was 92. It only goes up. As I understand it, 92 is not very high with PSC but we don’t like the fact that it only keeps going up, not up and down. It did go up to 92 from 60 which is quite a jump from earlier months when it would only go up 5 points or so. If it goes up again, they will do an MRI and my dad may start chemo depending upon MRI . With cancer found in 2 nearby lymph noids (that were removed) having clear margins (if there is such a thing with this cancer) I am very concerned about this being a sign that either the cancer was never fully gone or it is back. His Oncologist talked about doing a particular chemo with Tamoxifin based upon a somewhat successful study in asia. He seems to think in and outside of the box. Oh, one other thing. My dad has been on this drastic lifestyle change since the surgery. This last month his Oncologist asked my dad to stop taking any and all suppliments to see if an change with his markers. His marker increased the most in this month. Now he is back on, so we will see what next month brings.

Sorry for such a long post but wanted to give as much info as I could. He is currently on the Gerson Diet and a mess of other things by his holistic MD. Any hope to share? Any success without chemo? Anyone continue to have higher tumor markers without the cancer? Perhaps a problem with is liver not working right after such an invasive surgery? From my research, this cancer is doom and gloom. I have not found one real survivor except Sherman Sanders. It doesn’t ever seem to go away, just life extended. I need some good news for my Dad. Please share with me. Anyone is welcome to email me outside this group too at lorijohnsonusa@yahoo.com.
Thank you,