Intrahepatic cholangiocarcinoma _ The 70 years old mom’s story.
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Ali….. So sorry, they do not advice patients. We are fortunate to have this team working with the Foundation.
Hugs
MarionAli…our medical advisory board is comprised of some of the top physicians in this field:
http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/Additionally, you may want to take a look at our patient/caregiver driven thread:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126and the non-US physician list provided by our members:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13913You are a great advocate for your Mom.
Wishing for a great response to treatment
Hugs
MarionI agree to the above, and you must get a few opinions for treatment. Oncologists will have different ideas for a treatment plan, and you have to choose the best for you mom, by research, communicating with other people and judging her individual health. My mom was diagnosed two months ago, and is already weak and fatigued so chose not to do chemo because of her unique health situation. I am still learning, and you need to have her eat very small quantities throughout the day. She never eats a lot, but rather healthy food in small portions. She also has warm lemon/ginger water in the morning. Of course calories and not restricting any foods is important, but still try to lean toward a healthy diet. I know the challenges! What is the tumor size?
All the best toward helping your mom! You are doing the right thing by asking questions and being concerned about treatment and if that is the right choice.
marions and Lainy thank you for your concern.
She fells very tired today and doesn’t want to walk.
I know lost of cancer centers in US.
Which oncologists in US are very experienced with Cholangiocarcinoma ?Thank you in advance. Best regards.
Dear Alikemal, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your Mom and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Most of the time Ascites are drained which helps to bring comfort to the patient. As for diet sometimes it helps to have a patient ‘graze’ throughout the day rather than sit at a plate FULL of food. I found that my husband really took to comfort foods like soups, pasta, omelets, puddings, rice and things like that. Please do keep us updated on Mom’s progress as we truly care.
Alikemal….welcome to our site and sorry for the reasons to find us, but we are glad you are here.
I can’t comment on chemo dosage, perhaps someone else is able to do so.
The type of treatment is based on the individual disease presentation and the patients overall health as well as accessibility to the various treatment options.
Is it possible for you to speak with the physicians? You mentioned Ascites and I wonder how this is being addressed.
I think that your Mom should eat whatever her heart desires and doesn’t cause any digestive problems. High protein meals spread throughout the day are recommended, but often times and due to chemotherapy side effect (metallic taste or lack of desire to eat) some foods don’t appeal to patients, hence I believe to get in the calories any way you can.
I hope for others to chime in and share their thoughts with us.
Hugs
MarionHello. How are you?
This forum is very thoughtful and full of information. Thanks for all the supporters.My mom who is leaving in Ankara, Turkey, has been diagnosed with Intrahepatic cholangiocarcinoma (ICC) . The doctors said her stage is IV and she has numerous liver Metastasis. The main tumor size is
The cancer has spread to nearby lymph nodes.She is 70 and 50 kilos. She lost 12 kilos in one year. She has celiac disease.
She had first chemo Gemzar 1000 mg /cisplatin 40 mg 1 month ago.
After the 1 chemo she had fever and infection. she stayed in hospital for 2 weeks.
She had second chemo. Only Gemzar 1200 Mg is given two days ago.Is the treatment correct ? How doses are calculated ?
She has Ascites body fluid, What’s the right diet for her ?
According to articles I read intrahepatic cholangiocarcinomas is associated with poor prognosis. Do you reccomend any other treatment ?
All the best for all.
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