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My heart goes out to you all. Cholangiocarcinoma is such a nasty, and dismal cancer that it’s so difficult to build hope, much less maintain it as you go in for each visit with the doctor. Just try and remember that doctors are presenting their most reasoned opinion based upon median survival data. Like Amilcar said above, the disease is unpredictable, and not likely to adhere to median prognosis statistics. Doctors do their best based on the facts they have before them, but it doesn’t necessarily mean that the facts will apply universally to every case. Try and keep that in mind as you maintain your hope.
Big hugs to you all.
Kate and devoncat – it’s not intuitive at all, but there is a donations button on the wiki page. I think this link may take you to the paypal account: https://www.paypal.com/cgi-bin/webscr
If it doesn’t take you to a page that lists “The Cholangiocarcinoma Foundation” at the top, then go to the wiki page and just click on the donation button. It’s in the lower, right corner of the page. Maybe we can get Rick to add the button to the top of every page until the new website is launched.
On our way home from SLC (three of us were on the same flight to Houston), one of the board members was sitting next to a passenger who lost a relative to cholangiocarcinoma several years ago. I still have chills thinking about the forces that were in play all weekend surrounding the meetings…
I think I’d like to add a bit to JerryD’s explanation. I believe that intrahepatic cholangio is considered primary liver cancer. Regardless, what the previous posters have mentioned about surgery is unfortunately the case for the majority of CC patients. You really have to catch it early to be a candidate for transplant.
Additionally, I don’t think you’ll be blocked from reading the messages if your registration has been deleted. I am always able to read when I’m not logged in. You’ll only be prevented from posting if you don’t have a registration. Rick – please correct me if I am wrong.
I think this is a great measure to help cut out the spam. I’m dismayed every time I come on here and see the spam, and it’s getting ridiculous that the moderators are having to commit so much time to monitor the spam postings.
Big hugs to you, Andrea. Your mum is loved and will never be forgotten.
ukmember – I am having trouble finding the webcast on the link provided. What part of the page can we find the webcast? Thanks!
zuzuby – is your dad being treated at Mayo? If so, I’m curious who is the oncologist on his case? It’s great to hear that your dad is receiving good treatment.
Regarding Avastin, my understanding is that it is tolerated very well. I believe Avastin is a biological agent that inhibits the growth of blood vessels to the tumors. At least from my perspective, I think I would be more concerned about the side effects from the chemo agents rather than the biological agent
That is terrible and incredibly unprofessional. Be sure to report these comments up the chain of command at the hospital. That should never happen to a patient. I don’t know if your dad has been treated there previously, but my personal reaction is to avoid that hospital in the future.
My best to your dad. I hope he comes back from this episode quickly, and I hope his spirits remain high. High spirits to you and your mom as well. Don’t let this knock you down. Big hugs to you.
In case anyone is wondering, this may be the abstract bosco references above. (although I’m not completely certain)
Bosco – I think you hit on a question that many patients face – which regime to choose? I do not feel like it is my place to comment on which regime to choose, as this is an incredibly personal decision with no right/wrong answer. However, I’d like to make a comment regarding clinical trials due to some misconseptions that seem to exist. First, I think clinical trials are fantastic. Without these trials, there will not be advances in the treatment of cholangio. The researchers that run these trials are relentless at finding positive results, and I believe they will find a good treatment.
My only comment pertains to the purpose of a clinical trial. The underlying purpose is to answer the hypothesis posed by the researcher. However, there is sometimes a perceived purpose from the patient’s perspective that the clinical trial presents a means of providing a cure, or at least a reduction in tumor growth, for an individual patient. Now, this result may very well flow out of the clinical trial, and the individual patient may see positive results. But what I’m getting at is that the clinical trial is not being presented for the purposes of treating one patient. Rather, it’s being offered to try to answer a question that applies to many patients. So, I would keep that in mind when evaluating clinical trials.
I know that doesn’t really help you with advising your sister. My best to you both as you evaluate the options and decide on the next course of treatment. I will keep you both in my thoughts and prayers.
Nn – I feel like we’re the same person. In November 2005, my best friend was diagnosed with intrahepatic cholangiocarcinoma. She was 30 years old at the time of diagnosis. I spent the next year of my life pouring over internet sites, soaking up any information I could find. I quickly stumbled across the Clements family (see the blogs linked on the wiki site) and put my friend in touch with them. A couple months later, Rick kindly created this website and published it on the net. Slowly but surely, we’ve formed a family among this community. I hate having to welcome you to our family, but I’m so happy that we have a family here for you and your friend to turn to. (two years ago that was not the case – thank you so much Stacie and Rick!!)
I’m going to go through your email, and try to address all your points. No doubt my opinions will vary from others’. No matter what – there is no right or wrong answer from the outsider’s perspective. Every decision your friend makes is the right decision. Always remind her of that.
First, I highly recommend your friend gets in touch with an oncologist at one of the top cancer research hospitals. I’m not sure where you are located, but in the US, less than 5,000 patients are diagnosed with cholangiocarcinoma every year. Because of those small numbers, very few oncologists have the experience to appropriately advise your friend during her treatment. However, the main cancer research hospitals (MD Anderson, Mayo, Sloan-Kettering, and Dana-Farber in the US) see many more of these cases than any of the other hospitals. So, depending on where you are located, you should encourage your friend to visit one of these hospitals. I cannot really comment on hospitals outside the US because I am not as familiar. I know there is a great surgeon in Leeds in the UK. After attending the big American Society of Clinical Oncologists conference, I am understand that the Princess Margaret hosital in Canada is the premier institution there. But my non-US understanding stops there.
I think it’s typical to be caught in the administrative red tape, thereby having to wait a while to see an oncologist. However, someone needs to be a great advocate for your friend and get her in ASAP. Never take no for an answer. As you read through more posts, you will see that many patients experienced “no’s” from hospitals and insurance. But if you are persistent, you will eventually get a “yes.” So I encourage your friend and her care givers to be persistent. Don’t take no for an answer.
I cannot personally comment on what to expect from the first oncologist visit, as I have not sat in that office. But there are many people on this board who can (and will) comment.
You are right – as far as non-surgical options are concerned, there is no “conventional treatment” or standard for care for cholangiocarcinoma. So pretty much any non-surgical treatment your friend receives is experimental. Surgery is the option for cure. Everything else is all about improving quality of life and length of life.
I have personally been very impressed with the data I’ve seen where Avastin is incorporated with chemotherapy for treating other cancers. (like colon cancer) There has been an increase in overall survival, especially when the Avastin is never discontinued. However, I am not aware of a similar study done on cholangiocarcinoma, so I really cannot comment on whether this will help your friend or not.
I wish you and your friend well. I will add you both to my prayer list. I wish I had more definitive information to share with you. I think from this message, the most important element is to get into a major cancer research hospital. She needs to see a specialist, and she won’t find a specialist at just any hospital.
Agreed, Jeff. There are several brilliant minds working tirelessly to find an answer. I wish they had already found it, but I’m encouraged to see the forward progression as well as the dedication. I have faith that one day we’ll have a break through. Maybe our break through will fuel all the other cancers as well…
My best to you, Jeff.
Another thing that I found interesting were some of the trials involving bevacizumab (Avastin). There were a couple of different cancer types that looked at the benefit of including bevacizumab with the chemo regime. I know colon cancer was one, and I believe lung cancer was another. There was an increase in overall survival witnessed in these studies, but I believe these were retroactive studies so there should be more data to come in the future. (based on randomized samples)
I’m editing this post to say that I’m not suggesting there is a link between the findings from the colon and lung cancer studies and treating cholangio. I’m just saying the oncologists are starting to see evidence that bevacizumab may offer benefits when combined with chemotherapy. Hopefully this will ring true for cholangio as well, but there has not been a study conducted to give any evidence to this hope…
ASCO really offers some great resources. Another fantastic resource that ASCO provides is the People Living With Cancer website. (http://www.plwc.org) I had the opportunity to meet with several ASCO members who work with advocates, and they are doing some great things.
In regards to cholangio trials that were presented at ASCO, there were few. But I thought I’d link some of the abstracts that I did have the opportunity to see and visit with the main authors. I hope these links work:
Somatic mutations of EGFR signal transducers and expression of tumor suppressor PTEN in biliary tract carcinoma.
Phase II study of gemcitabine, oxaliplatin in combination with bevacizumab (GEMOX- in patients with unresectable or metastatic biliary tract and gallbladder cancers.
SWOG 0514: A phase II study of sorafenib (BAY 43-9006) as single agent in patients (pts) with unresectable or metastatic gallbladder cancer or cholangiocarcinomas.
What’s interesting is the study presented on liver cancer and sorafenib. Liver cancer patients treated with sorafenib experienced a greater overall survival. (median overall survival increased from 7.9 months to 10.7 months) This increase in overall survival was significant enough that sorafenib is being contemplated to be the first line of treatment for liver cancer. However, studies involving sorafenib and cholangio did not see similar benefits. I have a question into one of the doctors asking him to elaborate on this further, as the study on liver cancer is probably very different from the study on cholangio. As soon as I get an answer, I’ll update this message thread. In the mean time, here’s the study on liver cancer:
Sorafenib improves survival in advanced Hepatocellular Carcinoma (HCC): Results of a Phase III randomized placebo-controlled trial (SHARP trial)
Welcome to the boards, whirlgigs and Sanilee. I am glad you found us.
My heart goes out to you both. There’s a lot of useful information on here, and so many helpful people.