pcl1029

Hi,
Truly sorry for your loss, I know how you feel, I just back from my sister-in-law’s hospice care facility and will go to her funeral this coming Saturday.
She died as the result of organ failure due to CCA. And by coincidence , I am also a CCA patient . So I understand what you had been through.
Whether life is fair or not, I have no control over it, I, like most other patients ,try to live one day at a time, try my best to learn about this disease and hopefully can be of value for finding a better treatment plan for all the CCA patients. In that way Your father will not have died in vain. You provided info.
For your father’ disease and it helped us to look into the case, and compare to other patients’ data. So your father did contribute to help our cause to find a better solution for attacking this disease. You should be proud of yourself .
God bless.

Hi,
Please read the experience forum under the Chemotherapy . Scroll down and you will find a lot of info on cetuximab as well as Avastin,the two most common targeted therapy agents in discussion.
God bless.

Hi,Gavin,
I actually look at this article about an hour ago; and I will research on the three individual herbs.
As you may remember, I once asked you to get some info on some other plants,
I did order a few (7) of those in power form and I will use them on myself to see what happen in “the one man clinical trial of myself”using herbs and I will report the findings. I have the advantage of knowing the herbs both as part of my culture and my education in college; also I have the good fortune to know the head of the Chinese Hongkong University who chaired the Tradition Chinese Herbal dept. So let see what will happen.
Again,thanks for your info.
God bless.

Hi,Malc2073,
Thanks for the BILCAP completion questionnaire in advance.
But I also want yours,since you tolerated the drug quite well.Just try to recall whatever side effects you had if you cannot get the questionnaire.
I want to compare the data provided by you to the research data that I had.
You did mention the curve(the one that in the BILCAP trial poster) and saw how steep the first part of the study is. I will use your data and compare to others and I will talk to one of the investigator of the BILCAP study face to face if I can locate him/her in the upcoming ASCO 2012 convention.And I will report back here.
Thanks once again.
BTW, I did try to edit the “cholangiocarcinoma” info on the Wikilpedia web site;as you mentioned before ;their language is harsh and not up to date.but one of the contributor changed it back to the old version; at this point I politely ask him the reason why and I don’t believe he knows this disease as much as I do. So, at this point I let the old version stands just to be polite; and await for his/her answer. but if you want to read what I wrote, you can click the view history on the top right bar on that page.
God bless.

Hi,mcf,

I am so sorry for your loss.I truly understand how you feel at this moment.
My sister-in-law passed away just 4 days ago.
so take care of yourself and get some rest.
May the Love of our Jesus Christ,the Grace of God, and the Fellowship of the Holy Spirit be always protect and guide you and your family.
god bless.

Hi,MaLc2073 or Katja,

First congratulation for joining the BILCAP study and finishing with the best possible result that the study can offer.

I know about Helen’s work through Gavin and her communication message here . She is very devoted to her AMMF (the foundation) and work tirelessly for the same reason as The Cholangiocarcinoma Foundation here. she follows The BILCAP study very closely and offer me great help in both personal and professional interest in understanding the study.The BILCAP study result and outcome may eventually affect the international oncology community in treating CCA.
If I may, is it possible for you or your daughter to describe the adverse reactions/side effects AFTER each cycle of Xeloda.(total=8cycles) and give a grade from 1-4 to describe the severeness of each problem.(grade 4 is the most severe). I am interested in the PROGRESSION or the LACK of it of the adverse reactions.
Thanks in advance for your help.
Here is the grade system that you can use to describe the side effects.

I am looking for 6 of the following side effects;but if you can add the ones that affected you the most.( or those did not listed below). it will help in the research too.
1.Grade 2 diarrhea=more than 4-6 stools/day.or stools at night while sleeping without the help of antidiarrheal medicine like loperamide.
2.Grade 2 nausea=food intake significantly decreased but able to eat intermittently due to nausea.
3.Grade 2 vomiting=2-5 episodes in any 24 hour period.
4.Grade 2 hand-and-foot syndrome=PAINFUL erythema(redness or rash of the skin);swelling of the hands and/or foot; or dry and cracked skin on hands and heels of the feet.
5.Grade 2 stomatitis=PAINFUL erythema,edema or ulcers of the mouth or tongue,but able to eat.
6.Grade 2 fever and neutropenia=a fever of 100.5F or higher or any evidence or signs of potential infection.

IF Any of the above>Grade 2,please list the severeness and assign it as 3.
Any of the above
If you can provide the beginning and ending date of each cycle,and WHEN the Grade 2 or higher side effects occur ,it will help tremendously.
Good luck and
God bless.

Hi,

I am an intrahepatic CCA patient,like you,without mets to lymph nodes for the past 34 months.

May i ask how old your are? so i can have a better picture of your CCA journey.

As a rule of thumb ,when the primary cancer(ie: in your case the CCA is the primary);has metastasized to other parts of the body(ie: in your case,the lymph nodes); The best option will be systemic treatment by chemotherapy agents since once the agents are inside your body,they go through the entire body to destroy the cancer cells even they cannot be seen on the Cat scan.
Once the cancer in your lymph nodes disappeared because of the effectiveness of the chemotherapy;then ,in your case , RFA for the two small one in the liver and surgery for the big one is the best option to consider first.Radioembolization or will become another option if there are no other metastasis found.
Depending on each individual’s own current health condition,the age and their own character in handling matter such as this disease; chemotherapy can work and even make tumors disappear or decreasing in sizes.But in general LIVER is relatively “chemo-resistant”, and other means like radiation should always be pursuit to increase the chance of living meaningfully .
Cure for CCA ,in my opinion,is still a long way to go.
Good luck and keep in touch,
God bless.

Hi,
With the mets to the abdomen which you did not mentioned in the first message; systemic chemotherapy will be the best option.

Both the surgery and the radiation can be rule out at this point.

If you want to try other unconventional therapies;please go to the experience forum title.” Complementary and Alternative treatment—CAM” to get some ideas before start going to that direction.

There are two different ways the Bile duct malignant neoplasms can grow (especially for the one that grows in the hepatic ducts and the common bile duct).
They can grow OUT or grow IN and AROUND the bile ducts and therefore it is much easier to appear on the CT scan as a tumor-like structure (foci or center);however the bile duct neoplasm can also grow ALONG the bile duct on one or both sides of the bile duct and therefore it will appear as stricture (thickness or narrowing along the side of the bile ducts compare to the healthy part of the bile ducts). That is why experienced GI specialist and radiologist can make their diagnosis along with the CA19-9 and other lab results;CA19-9>129 is indicative of cholangiocarcinoma in terms of relatively accuracy.
Of courseMRCP and tissue biopsy are the best tools to confirm the diagnosis too
BTW,i am just a patient and not a doctor .

God bless.