Intrahepatic cholangiocarcinoma

Hi Jilly,

Welcome to the site. And thank you for sharing your story with us all. Wow, that really is quite some story that you have there! Thank you once again for sharing it here with us all. I hope for your success to continue and I am looking forward to hearing more from you. Please stay in touch and let us all know how things go for you.

Best wishes,

Gavin

Wow, Jilly, that is an amazing story. I’m certain that our bodies have the power to heal itself if we will just give it a chance. Keep up the great work and attitude.

Hi Jilly, That is quite a story and I am wishing for you to have continued success. Please keep us posted on how you are doing.

Cholangiocarcinoma
I was diagnosed in 1st week in September 2011. I was very jaundiced and tired, sleeping 3-4 hrs during the day.

I was admitted to hospital and had an external drain into a bag to see if liver was producing enough bile, it was!! Resection Surgery was out of the question. My left liver lobe was shrunken to nothing, just like a very dried up piece of meat, right hand side was damaged and bile duct blocked with tumour. I am not a transplant candidate, surgery was a 10-20% chance of survival which was not enough for me to even consider. I was offered a titanium stent which would be placed in the bile duct and attached into my duodenum. I opted for this as it would give me the chance to research other alternatives. Also was offered chemo, which I was told was only token chemo??? I refused, didn’t want to damage my body anymore.

When in the first week of hospitalisation I put myself on to a Hep A diet no fats no dairy & very little bread, lots of vegies and fresh fruit. My surgeon said to me “you can eat anything you want don’t put yourself through this diet it won’t make any difference to the outcome.” My liver blood pathology said Bilirubin (bile) was 485, should be 8-15, iron level 1377, so on it goes everything was extremely elevated. I had blood tests almost every day in the 3 weeks in hospital. The first day I asked my dr for a copy of the results, She said, your liver stats will not come down. I have copies of every blood test that was done and they all have been consistently coming down. My Bile count came down 200 points in the first week after the stent operation. The Dr told me, you will never get it down under a 100. The last day in hospital it was 55. It is now 11.
In between all this I researched naturopath’s in the city area, I was so blessed to find this wonderful dedicated man called Wayne Reilly. He had been a research scientist for the government doing cancer research for 20 years and what he doesn’t know about cancer and the blood is not worth knowing. He turned to Natural Medicine 10 yrs ago.
I take a regime vitamins and minerals. Also AVEMAR a supplement that boosts the immune system and has cancer killing properties. My diet consists of salads, vegies, fruit, small amounts of protein, dandelion tea, seeds & nuts, 3 litres of water a day.
After the three weeks in hospital I was allowed to leave. My last visit to the Dr was in a wheelchair as I couldn’t walk far YET!! The dr took one look at me told me to get my affairs in order and to get some Palliative care. I think she thought I was going to die very soon.
I came home the 2nd week in October. My Gp (dr) looks after my bloods giving me 3 weekly tests all of my liver enzymes are within normal range, iron level has gone from 1377 to 310, bile is 11, of the two cancer markers one is within normal range and the other has dropped from 750 to 467 in 3 weeks.
I am back to normal walking, swimming, enjoying life.

Cheers Jill

Glenys,

Welcome. I just live down the road in Hooper. I was diagnosed with intrahepatic CC in August this year. My is inoperable for the time being anyway. Have been doing chemo, with my last treatment last evening. Next week they will do a pet scan to see what has changed. Hoping for the best. I’m being treated at Huntsman. I hoping and praying for some good news…………….for both of us. Keep the faith.

Glenys,

Welcome aboard, it sounds like you have had a fairly good quality of life for the 3 years and that is something to be grateful for and your attitude will certainly help you face whatever is to come.

You might consider posting your holistic methods in the Alternative Treatments section of the board.

Patty

Dear Glenys,

Welcome to our family. I am sorry to hear that your cancer has returned. My daughter, Lauren, also has intrahepatic CC. She is only 25. She is on chemo right now. She has countless people praying for her too. I always envision God
up in heaven receiving prayers for Lauren and saying “This must be one special kid. So many people are sending prayers for her.” We also believe laughter to be one of the best medicines. We do our fair share of crying, but we spend a lot of time laughing. I hope your doctor can come up with a treatment plan for you. At our house, we call a biopsy a bop-to-the-bopsy, so I see we are on the same page. Take care and best wishes to you.

-Pam