Kris, your post reduce me to tears, although I am not the patient. I hope I can as brave as you are, and have the faith as firm as yours. It's hard to describe my feeling by English ( My native language is Chinese ), but your words really touch me deeply, and give me another point of view of how to face my mother's bile duct cancer and this difficult fight.

Thank you...

Louise & Marions: Thanks for your encouragement. I'll start to write the letter soon, and after finished, I'll e-mail to Louise for polish.

Thanks for Louise's help in advance.

I found the phase II study about using Gemzar/Cisplatin was presented on ASCO annual meeting at 2006, and it was published on British Journal of Cancer on August this year. From 2006 to now, it's about 3 years!!!! I don't know why it need such a long time. On the analogy of this, I am afraid of the phase III results won't be published until 2012......

So I want to wrote a letter to Dr. Valle, the main investigator in this research, to know some detailed questions. Do you think it is practicable? Is it unpolite?

As some of you may know, I live in Asia, and English isn't my native language, could someone give me some suggestions? I am not familar with English culture....

How to write a polite letter for this situation? Should I write an introduction in the beginning of the letter? What should I write in the end of the letter?

Thanks

4

(76 replies, posted in Introductions!)

Juila,
Have your sister started to receive chemotherapy? I think you can read the ASCO report regarding use Cisplatin/Gemzar to treat advanced bile duct cancer.

Best wishes to you and your sister.

5

(76 replies, posted in Introductions!)

Julia, I am sorry to hear this news. Due to my English isn't quite good, I come to visit this website very often, but post rarely. But I feel I need to reply your post this time.

I don't know why the doctors give up to do a resection for your sister? why didn't they remove the tumor appeared at liver simutaneously? Or the liver tumor is closed to portal vein?

As I know, if the tumor appear at the liver, they can remove bile duct and partial liver. Originally, my Mom was planned to do such kind of surgeory, but failed. My mother's cc has been meta to right lobe of liver and form two tumors, one is 6 cm and the other is 2 cm around. The doctor said they will remove the whole right lobe and the bile duct. Unfortuately, after laparoscopy, they found peritoneal metastasis, so they give up the resection option.

So, do you want to search for the 2nd opinion? If your sister only has one tumor appeared at liver, I think it should be resectalbe.

I hope you can understand what I mean. I really hope your sister can have a resection surgeory......

The oncologist has agreed to change my Mom's chemotherapy regime to Gemzar and Cisplatin. I showed the ASCO report to him, and discussed the dosage with him. In the ASCO report, Dr. Valle use 25mg/M2 cisplatin plus 1000mg/M2 Gemzar, two weeks on and one week off. The oncologist told me, in their hospital, they usually use 75mg/M2 Cisplatin per 3 weeks, because they found it's more effective in other cancer.

The doctor said if I want to try lower dosage, that's also okay. Cound someone share your experience and your dosage with me?

I am trying to know more about targeted therapy. I found this warning, so I posted it.

http://www.newsinferno.com/archives/4395

Tarceva warning in Canada   

Date Published: Friday, December 19th, 2008

Canadian health authorities announced important new information today about the use of Tarceva in patients with moderate liver impairment and advanced cancer.  According to Health Canada, a recent study indicated that such patients are more likely to die following treatment with Tarceva.

Tarceva, known generically as erlotinib, is in a class of drugs known as epidermal growth factor receptor (EGFR) tyrosine kinase inhibitors. These treatments are designed to block the EGFR protein, believed to play a role in cancer cell growth. Tarceva monotherapy is indicated for the treatment of patients with locally advanced or metastatic non-small cell lung cancer after failure of at least one prior chemotherapy regimen; Tarceva in combination with gemcitabine is indicated for the first-line treatment of patients with locally advanced, unresectable, or metastatic pancreatic cancer.
According to Health Canada, in a study of patients with advanced solid tumors that compared patients with moderate liver impairment and patients with normal liver function, ten of the fifteen patients with hepatic impairment died during treatment or within 30 days of the last Tarceva dose. Two patients died from rapidly progressing liver failure including 1 patient with hepatorenal syndrome. Laboratory findings of hepatic failure and/or renal failure were also observed in at least 4 patients out of the remaining 8 patients. Six out of the 10 patients who died had evidence of severe, rather than moderate liver impairment.   All patients had hepatic impairment due to advanced cancer with liver involvement such as hepatocellular carcinoma, cholangiocarcinoma, or liver metastases.

Health Canada said the Tarceva label will be updated to reflect the risk seen in the study.  Patients being treated with Tarceva have been advised to consult a doctor immediately if they experience any of the following signs or symptoms suggesting possible serious liver side effects:

Kristin, thanks for your suggestion. My mother do some simple Qigong after discharging from hospital. But I read some books about using Qigong to cure cancer, it needs one to two hours per day. My mother only do 20-30 mins around per day.

We go to hospital this morning, the doctor said it's unnecesarry to do CT scan now. I mentioned the ASCO report, and he accept. But my mother still feel afraid of changing 5-FU to other drungs, she's worried about that she'll become very weak and uncomfotable. So the doctor decide to keep 5-FU regime for two times. After two weeks later, if blood test show that CA19-9 keep going up, we should change to Gemzar/Cisplatin.

The doctor said Oxaliplatin is equal to Cisplatin. But I am still not quite sure. Because I found some doctors said Oxaliplatin seems to be weaker in some studies, but that's for breast cancer.

Hopefully, my mother's CA19-9 will be decreased after two weeks...

Ed P, could you give us more information about your cancer? From CT/MRI/PET, what did your doctor see? What did your blood test show? How about your liver and kidney function? How old are you?

My Mom was 60 years old and diagnosed with cc, stage IV on July 31. In the beginning, I felt so shock, and I also want to give up treatment. I think quality of life is more important, so I hope my mother try to use Chinese medicine, Qigong, eating lots of vegetables.... ect to control the tumor. Afterall, if those method does'nt work, they won't severly effect my mother's life quality.

But after I found this website, I found there are still some people prolong their life with good life quality by receiving medical treatment, I started to feel I shouldn't give up so quickly.

Actually, my mother has received 5 times of chemotherapy with 5-FU regime. She has no severe side effect, although her CA19-9 seems keep going up. Until now. my mother looks good. Besides, she is too young..... For me, it's hard to say " give up " now.

I think your family don't want you to suffer from unmeaningful pain. But they feel your situation is not to bad and it's worthy to try to receive more agressive treatment.

I hope you can read more posts on this website. Maybe you'll find there's still some hope for you.

Lucian, may I ask some question about Tian-Xian liquid?

1. Do you know if Tain-Xian liquid disturb chemotherapy? Do you see people use Tian-Xian liquid and receive chemotherapy simultaneously in Wan Zhen Guo's hospital in China?

2. How long did you stay in that hospital? In average, how much money do I need for receiving treatment in Wan Zhen Guo's hospital per month?

3. Besides Tian-Xian liquid, did your husband receive other treatment in Wan Zhen Guo's hospital?

I live in Taiwan. From internet, I saw some people had amazing treatment result by drinking Tian-Xian liquid in Taiwan and Japan. Of course, most of them are diagnosed with other cancer. But I also found a person who is also diagnosed with cholangiocarcinoma and live in Taiwan. He went to Wan Zhen Guo's hospital and after six month, PET scan result showed there are no tumor in his body. So I'd like to know more about Tian-Xian liquid and Wan Zhen Guo's hospital.

All the best wishes for you.

Thank you, Louise.

I tried to searched Dr. Valle JW, the major investigator of this study, on the Pubmed website and I found the Phase II trial has been published on the British Journal of Cancer in August. In that paper, they mentioned in Phase III study, patients' CA19-9 and quality of life was observed. In Phase II trial, they only check the treatment response by image.

Hopefully, they will publish the Phase III trial very soon, I truely want to know in their study, can CA19-9 reflect tumor progression very correctly?

Can someone explain "Cis (25 mg/m2) followed by Gem (1000 mg/m2 D1, 8 q21d)" for me? It mean use Cisplatin everyday? or only once a week? And what dose " D1, 8 q21d " mean? I don't fully understand. Could some one give me a hand? Thanks in advance.

Thanks for Marions's posting. I'll bring this information to discuss with my Mom's doctor.

Does anyone has the full text file?
http://www.abstract.asco.org/AbstView_65_30972.html

Thanks

Elicia, I know your pain and how you are feeling. My Mom is accepting chemotherapy for stage IV cholangiocarcinoma now. She was diagnosed on July 31. At the begining, I searched information about cc on the website, and I found it seems nothing is effective for stage IV cc. But later, I got more and more information, and found it seems still has many methods are wothy to try. Although from literature search, I found almost all research paper recognize chemotherapy is "ineffective" for cc, my Mom still wants to try it.

Originally, I prefer to give up chemotherapy. Because I am afraid of that if Mom only has few month to live, I don't want her be very weak and uncomfortable. Since the research paper shows chemotherapy is "ineffective", why we still need to try it? At that time, I was very struggling with should I make a decision for Mom or let her make choice by herself. Until now, I still has such kind of problems, for example, using Chinese medicine or not, doing Qigong or not, eat some supplement or not....

I think maybe this kind of struggles  is a path that we ( Patient's family )all have to walk on. I am very sorry for your Mom passed away, but I still hope you can release your sorrow soon. Just like jmoneypenny wrote "You did the best you possibly could, and she loved you for it."

Louise, thanks a lot for your exeperience sharing. I saw many people has good reposonse to Gemzar/Cisplatin chemotherapy, I am hoping that my Mom's cc will be controlled by it too. But my Mom seems to be afraid of the side effect, she still want to keep 5-FU regime that don't make her too uncomfortable. Sometimes I feel very struggling, I don't know if I should push my Mom to accept what I want her to do, such as eat lots of vegetables, trying Chinese medicine..etc. Afterall, I don't know if they are effective to control tumor growth.

Now, I also don't know if Gemzar/Cisplatin has real benefit for Mom. But I agree with what Doctor suggested: CA19-9 keep going up probably means 5-FU has no effect on controling Mom's cc. Mom want to do CT to further confirm the effect of 5-FU. But that might take 2 weeks, I am worried that she'll waste time. It's so difficult to make a decision...... I should make a decision for her? Or I should let her make choice by herself?

Lainy and Marions, thank you for your kindly support. In fact, I come to this website everyday from I found this site. My English reading skill is okay, but writing is not good enough  tongue , so I didn't post a lot. But it's certain that I will keep visit here often.

Hello, I live in Taiwan. My Mom was diagnosed with cholangiocarcinoma, Stage IV at July 31. Doctor said resection has not been suitable for Mom, so he suggested us to receive chemotherapy. Mom had 5-FU plus leucovorin for four times, and last Thursday, doctor told us Mom's CA19-9 was keep going up, from 159 to 230 during the four weeks. Doctor said it means 5-FU doesn't work for Mom, so he said we need to change drugs.

I saw many posts on this board, and it seems some people has good response to Gemzar / Cisplatin. I searched on the website, it seems that Oxaliplatin is similar to Cisplatin, but less side effect. Anyone can give me suggestion? I have to discussed Mom's drug with the doctor this Thursday.

I'm very glad that I found this site. Because there are so few people has experience on cc, I can't find a Chinese discussion board. Thanks all of you provide so much useful information , cherish experience and kindly supports. And sorry, due to my English is not quite good, I can't describe my thought very correctly. I hope someday, I can share my Mom's successful experience and give others support on this board.