sara
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Hmmm…excellent points by all! This will all be addressed as we “upgrade our flat!”
So I don’t end up contributing to the burying of new members’ posts, I will propose some suggestions for the message board over on the “Suggestions” thread, and would appreciate any comments and ideas the rest of you have!
-s
Robyn,
As Joyce said above, no two people seem to react the same way to the same treatment with this cancer. Further, if the patient is not a surgical candidate, there is currently no standardized chemotherapy treatment for cholangiocarcinoma. Therefore, you’ll find that many patients on this board are on very different types of chemotherapy. Taking all this into consideration, the only “right” course of treatment is the treatment option that fits best into the patient’s life – what option best fulfills the patient’s priorities in quality of life, length of life, etc. At the end of the day, it is important to remember that the patient dictates the treatment – not the oncologists. The oncologist is only there to present the facts so that the patient can make an informed decision. So please don’t feel guilty for going against what the oncologists think.
I am puzzled by your statement that American doctors do not research whether one chemo works better than another. This concerns me that perhaps the oncologist you saw only offered one chemo, and represented that it was the only option. I hope this is not the case. The truth is that the research oncologists around the world, US included, are testing many different types of chemos, chemo combinations, and chemo/biological agent combinations in hopes at finding an answer for the digestive cancers (including cholangiocarcinoma). The main issue is that, to date, none of the trials has provided a clear “standard of care” for cholangiocarcinoma. Some of the clinical trials currently recruiting participants can be found here: http://clinicaltrials.gov/ct/search;jsessionid=D0B07FBF0ECE50EA426E4A22A58C8CE3?term=cholangiocarcinoma
My thoughts and prayers are with you and your husband – I hope the restricted diet continues to provide a good quality of life, while holding the cancer at bay.
– Sara
I echo both Kris and Peter’s sentiments. Please seek additional opinions.
You are all in my thoughts and prayers.
– Sara
Ted and Patty,
You are in my thoughts and prayers. May you have many peaceful moments together.
Hugs,
SaraI haven’t had the opportunity to check this organization out, but it may be worth looking into Patient Advocacy Foundation Co-Pay Relief. http://www.copays.org/
Just to add on, I believe this is a bench-study on the cells. I am not aware of how/when this will translate into clinical trials. We will follow up with our medical council to ascertain their perspective on this study.
I believe the information regarding sorafenib is contradictory. There have been releases this year regarding the improvements in expectancy when using sorafenib to treat liver cancer. Worth noting, the results presented at the ASCO conference in June indicated approximately a 3-month overall improvement in survival. (from 7.9 months on “standard” treatments to 10.7 months on the sorafenib protocol)
That being said, similar improvements have not been seen in cholangiocarcinoma when treated with sorafenib alone. I think you will see this reflected by some of the patients on this site that participated in the sorafenib study that was recruiting people in late 2005/early 2006. Of course, no two patients on this site seem to respond similarly, so what is good/bad for one does not necessarily translate for the rest of the community.
There is a paper coming out of Germany that indicates MS-275 used alone, or in conjunction with anticancer agents (such as sorafenib) inhibits the growth of human cholangiocarcinoma cells. This study is coming from the bench, and I am unaware of any clinical trials emerging from this early study. But I’m including the text of the abstract in the research section in the event that anyone is interested in reading.
Jules – This is so very exciting! I’m sure Stacie will be happy to hear all about it. We’re so fortunate to have you over there, representing the foundation.
Hi, Lana. I am very sad to hear about your father. My thoughts and prayers are with you all.
I think everyone on this board can relate with how frustrating and scary this cancer can be. (not to mention expensive!) Chemo is only effective at holding the tumors at bay for so long. Eventually, the tumor will build up resistance to the chemo, and the tumors will begin to grow again. It sounds like this is the course that your dad’s tumors ran while undergoing treatment at Mayo, although I only speak generally, and am certainly not a doctor.
I think everyone on here will encourage you to seek second, third, fourth opinions. The reality is that cholangiocarcinoma is a specialized cancer, which encourages treatment by specialists. Unfortunately, despite much work, all the brilliant minds have not yet been able to find a solution for cholangiocarcinoma, outside of surgery. Therefore, if your dad is not a surgical candidate, he’s ultimately selecting his own treatment based on doctors’ recommendations. This requires that he seek as many opinions as possible, and do as much research as possible. There is no right/wrong answer here. If you check around on the boards, you’ll find that all the patients on here have very different experiences for similar treatments. Therefore, no one on here can give you a clear direction, although many can give you a good idea of what you may expect with a given treatment.
Personally, I’m very intrigued by some of the success at managing the cancer growth and symptoms through diet. But that’s just me. You and your family may pick up on something else entirely through speaking with doctors, doing research, and reading the posts on here. I wish you well on this journey, and please don’t hesitate to ask questions on this forum. There are some very knowledgable and helpful people on here – they will answer whenever possible.
Dear Ginger – i’m very sad to hear for your loss. I can only hope that your aunt has peace, and your family is able to heal.
Putting the incidence into perspective, in 2006, approximately 16% of all new cancer cases were from breast cancer. (source: http://www.cancer.org/downloads/stt/CAFF06EsCsMc.pdf) Breast cancer is one of the larger cancer types, however it made up 16% of all new cases in 2006. Compare that to biliary, liver, and gall bladder cancers, which accounted for approximately 2% of all new cancer cases in 2006. (Breaking cholagiocarcinoma out from the liver and gall bladder cancers is difficult to do because intrahepatic is often lumped in with liver cancer, and extrahepatic is often lumped in with gall bladder cancer.) Yes, we are smaller than the largest cancer types. However, 2% is not necessarily rare – at least not in my book.
The only known cure, at least at this time, is resection or transplant. Since very few of cholangio patients are candiates for these options, early detection becomes key. The only way we’ll ever arrive at early detection is through education and research, and we’ll need to leverage that 2% value as much as possible to assist the researchers and clinicians towards finding better solutions.
Cindy – I am so saddened to hear of this. I echo the thoughts of others – bring your daughter to multiple specialists to get second/third/fourth opinions. You mention that your daughter was diagnosed in LA – is that Los Angeles, or Louisiana? If you are in Louisiana, I highly recommend coming to MD Anderson in Houston and seeing Dr. Melanie Thomas.
My thoughts and prayers are with you.
kap – I apologize if I come across as a downer. I genuinely hope that Dr. Canady can offer a viable option for all cholangio patients – especially your friend. At the same time, I do think it’s responsible to note to the community on this site that Dr. Canady’s only publication on Pub Med pertains to his patented device (published in 2006), and there haven’t been any late-breaking notices from the cancer institutions regarding the combination of 3-D imaging and resection with the argon “knife.” Again, I hope that I’m being unnecessarily paranoid. I’d love nothing more than for Dr. Canady to be able to offer the surgical cure that eludes so many cholangiocarcinoma patients.
Hi, Sonja. I’m sad to hear that your fiance has been diagnosed with cholangiocarcinoma. I’m glad you found this community, but I sure wish you didn’t have a reason to be looking for us. You guys are definitely included in my thoughts and prayers. If you are going to the Mayo Clinic, I highly recommend you see Dr. Steve Alberts. He’s an oncologist who is very focused on cholangiocarcinoma, highly regarded among his peers, and he’s extremely kind. He’s definitely someone you’d want on your team from Mayo.
Katia,
I’m butting in a bit on your question. It appears that Dr. Canady is with the Institute for Advanced Biological Technical Sciences in Hampton, Virginia, USA. He also has a company dedicated to selling his argon plasma coagulation device – Canady Technologies. I assume he must have privileges at some hospital(s) if he is performing surgeries with this device, although it is not immediately clear. I’m guessing it’s somewhere in Virginia. I am a bit skeptical, mostly because everything I’m reading on the net and medical publications seem to be focused on marketing his patented device, and I have yet to see news flashes on the cancer sites linking the 3D-imaging & argon device to increased survivorship with liver cancers. I hope I’m just being paraoid.
Edited message to include the link to Dr. Canady on the Monongahela Valley Hospital in Pennsylvania, USA. http://www.monvalleyhospital.com/findphysician_results.asp?alpha=c
Amilcar – my friend, Kelly, also fought taking the steroids for a long time, as well as the blood transfusions. She eventually relented when she started to turn for the worse, and the steroids kicked in almost immediately. It bought her some quality time with her husband in those last couple of months. She also started doing better after she finally allowed a blood transfusion.
