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When I suggested to one oncologist for a molecular test, he did not recommend it since the cancer has not spread. Does this sound ludicrous? Am I missing something here? I thought this is a test to determine what is the cause or best treatment plan for the cancer. Is there a reason why the doctor would want to avoid this test? Again, the patient has not undergone treatment and trying to determine the best option.
Welcome! My mom was diagnosed with intra CC a few months ago and surgery is not an option. I wonder if that is good in a way due to her age and other underlying health issue. It was very difficult to hear the news and want more treatment options offered other than chemo. Definitely seek several oncologists treatment plans and really try to understand the dynamics of your mom’s health, as I see that each CC patient needs to be looked at individually. I don’t think there is a one treatment fits all. Let her have a normal life as much as possible, and still don’t dismiss good nutrition and being positive. She is lucky to have you for support.
A simple recommendation which helps my mom is chewing on ginger and spitting it out after each meal. Hopefully, this is helping prevent stomach aches and nausea. It also has several other health benefits. Think about foods that are gentle to the GI system. She must have a supplement twice a day so she gets all her vitamins and minerals due to her decreased appetite.
Thanks! Can I go back and listen to yesterdays presentations?
Welcome to the site, and thank you for sharing. What are your side effects from the chemo? Does the oncologist suggest a break so the body can recover? How is your appetite and energy level?
Ask questions or share concerns with your oncology team.January 31, 2017 at 4:13 am in reply to: Update on the Diagnosis and Treatment of Cholangiocarcinoma. #93965
I usually read the abstracts and sometimes able to see the entire article. This site charges $34 for the article. Is that correct or am I able to download? It seems you provide many links to NIH.
I agree to smaller portions throughout the day. Make sure, if possible to feed your mom nutritious foods. Can you make fresh smoothies? These can be a veggie/fruit combination or vegetable juice? I would recommend to stay away from dairy, but can use substitutes such as almond milk. My mom eats smaller portions throughout day, this can include veggie juices, salads with variety of ingredients, salmon, nuts, eggs, bread, and of course choose some of her favorites. Lemon water helps with chewing on ginger. Again, it’s individual choice and your mom may be sensitive and allergic to foods mentioned above, so use your judgment. These are only a few suggestions. A few bites every hour is better than forcing a full meal at one setting.January 28, 2017 at 2:54 pm in reply to: inoperable, but clean scan at 15 months (now 39 months) #86220
That is incredible news, and nice to see evidence that conventional treatment works.
I am glad to be part of this team of people sharing experiences, and hope to be helpful to someone out there who is going through similar experiences. I also want to make a difference in this rare cancer, the disappointment, shocks, fights, hopes, and eventual positive outcomes on various treatment methods. Hopefully more people sign up on this board and share, as we know it’s hard to even find people with this rare condition.
Thanks for sharing the research!January 27, 2017 at 5:24 pm in reply to: SWOG Launches National Immunotherapy Clinical Trial for Rare Cancers #93993
Thanks Marion for updating the board on new treatment studies. I want to see more alternatives to chemo for patients who don’t respond well to chemo or have unbearable side effects. I dislike seeing chemo as the standard treatment for CC, and hope to see more promising results with alternatives.
My mom got this rare condition unexpectedly also, as many people have stated. Even though this is my opinion, I don’t think it is unexpectedly and most likely developed over a few years of inflammation build up in the GI region. Does anyone agree or have experience with some sort of high inflammation which was a precursor to the bile duct cancer?
You have an incredible story, and thanks for sharing. Hopefully we see more cases like yours in the future. Also, this includes people who are unable to get surgery as you were able. Sorry if you have mentioned this, but what is the anti inflammatory drug you have taken? Did you follow a strict diet?
Thanks again, and hopefully we have more like you sharing stories.
I totally understand, for most of us it is a big surprise! That is why more research and studies need to be implemented. I was going to suggest for him to get a break from chemo, as that depletes the body also, but that was already given. I feel this is a trial error treatment, as some patients respond to the standard bile duct cancer treatment and some don’t. That’s why it is so difficult and patients need to be looked at individually. Hopefully there will be more immune therapy testing and I still need to see how effective genetic testing of the blood is. Again, get a few opinions from oncologists, and I did the same. It didn’t make it easier, but at least I realize how oncologists differ on treatment plans.
I am with you and experience the toughness of this cancer and as Marion stated in another posted, hopefully it can be controlled and be looked at as a chronic disease rather than cancer.
Thanks for everyone who shares!
Thanks so much for your responses and participating on this website. I hope more people afflicted with this cancer or family members join. It is so important to share experiences and offer support. All of us hate it, but need hope to survive and get through this.
Marion: the second oncologist actually said SIRT would not be beneficial and offered stereotactic radiation (sorry, my mistake, it’s not radio embolization)
This is an extremely difficult situation I have encountered in life, and at this time we may not select a treatment plan. As I have learned in such a short time, decisions, situations change, so maybe or maybe not this will change. I hope more clinical trials are offered with more funding for all patients, and not denying anyone, where there are alternatives to chemo.
You are at the right place to ask questions, and I have gone through the same with my mom.
Definitely get a few opinions, as you will see in my posts how they differ. Yes, the difficult part is choosing the best treatment plan or none at all until you are ready. It’s tough! How do you feel? What is your energy? How was it before chemo? Your overall health, well being, appetite, etc…
Keep going and don’t give up!