My dad has Cholangiocarcinoma
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Hi,
Yes, he will lost the appetite and some weight and depression is common.
Most likely the weight loss is here to stay ; ask the doctor to give your father antidepressant like Mirtazapine 15 or 30mg once a day. In addition to it’s antidepressant pharmacological indication; one of it’s side effect benefit is increase appetite and weight gain.
I am a patient and not a doctor,but I travel the same road your father is traveling. Depending on what your father really wants;reality is there are currently no effective treatment for this cancer. I prefer quality of life rather than quantity.but it is all up to your father. don’t worry, my friend God will be with you and your family. Pray hard.God bless.
Hi Samira,
If bringing your Dad to the UK is one of the options, you might want to look at http://www.ammf.org.uk/ It is the UK based cholangiocarcinoma charity and there will be more information on UK trials. http://www.ammf.org.uk/helpful-links/
There is also information on UK based specialists. Apologies if this information has already been given to you.
Thank you Percy, his doctor is a member of GI department and is quiet doing well but I am just trying to do my best. My dad back home from hospital today, he is generally ok but he stop eating , he just eat a bit of food /drink . He had much better appetite when he was in hospital (however, they add B12, B6, Vitamin K to his serum).
Dr said we should not give him any extra supplement or vitamin pills and he should get use to normal eating. I am worry because if he will be stay like this, he will lose weight and get weak before chemo. do u think his appetite will back after few days or will get more worse?
ThxHi,
You need to give time for the surgical wound to be healed first.
If you are out of the States, most the clinical trials are off the table and may not be available. Do not waste time on searching.
NGS can be done on tissue block sample. I mentioned this test because you said you want to know the most up to date “ideas” for CC. But please remember, this are ideas and not treatment protocol. That means it’s usefulness is not proven yet and most oncologists here in the States,do nor really know how to use it. Remember, this NGS test has coming out just a few years ago,most likely it was not in the textbook the oncologists study while in school. I think your doctors estimate about your fathers situation should provide you a basic foundation in caring for your dad in the future.
University of Iran has experiences in treating cholangiocarcinoma ; I was in contact with a couple of daughter and son. Who, like you, have the responsibility to care for their parent. Just contact with the GI department of the university to see what they can do for your father.
God bless.My dad is in Iran and I am living in UK. I am trying to bring it here, but I do not receive positive feedback from doctors here, I do not know wt should do
Is next- generation sequencing available every wr for CC?Samira…where does your Dad live? Thailand as well as several countries in Europe are conducting Immunotherapy clinical studies.
Hugs,
MarionThank you all for your replies. My dad is already out of USA and I am not sure whether he could take part in clinical trails for immunotherapy or not?
and if anyone could help me to find a clinical trail for this stage would be greatly appreciated.
PCL1029 you mentioned chemo may be 6-8 weeks after surgery, but if makes tumor to spread more and control with chemo may be more difficult, am I right?
for NGS do they need fresh tissue or block sample from pathology is enough?
Many thanks again.Hi, Samira,
Just let you know that my message above to you is specific to your situation and not generalization if you read my answer carefully, I think I have provided the suggestion to your specific needs the best way I can base on your dad’s disease time frame and situation.
Your dad looks like have stage four Hilar cholangiocarcinoma mets to peritoneal and liver.
Peritoneal mets is difficult to treat systemically ,not to mention about surgery if an option. And you are right that the survival rate is minimum for patient who have mets to the peritoneal area
Normally if chemotherapy needs, it will be six to eight weeks after surgery.
You ask about “uptodate treatment option ” and that is why I suggested next- generation gene sequencing test to you in order to take advantage of the tissue sample that your dad had after the recent operation.
Immunology treatment like TIL@NIH currently in clinical trial is still accepting patient if your dad qualified . Other like PD-1 and PD-L1 antibodies are in the works and may be ready in a couple years.
God bless.Hello and welcome.
I agree with Percy except I think some treatments do improve quality of life, not just quantity. Each person responds differently. Usually chemo, if it helps, eventually stops working so they switch to a new chemo. When the cells have spread farther from original site, control if CC is much more difficult. Gene testing for known mutations to match with a known treatment for this is still a new science in research stages. That and immunotherapy mentioned by Percy seem to be the future of cancer treatments but are a long way from being mainstream. Still, I would get the testing done too if I could. Clinical trials are another option to seek (usually after known therapies are exhausted but not necessarily).
My sister has not had a lot of success with chemo but did respond well to y-90 and external beam radiation. This did not prevent or treat mets to other areas of body though, and all (including chemo) are considered palliative treatments, not curative. That said, there are a few who had stage 4 CC and responded well to chemo enough to get surgery but sadly this is not common.Hi,
Idon’think surgery will be an option due to the metastasis .
Gem/CIS will be used if it works till resistance occur. Other chemotherapy or targeted treatment will extend the quantity of life but not quality .
Ask the surgeon to help you to send tissue sample to Foundation One or Target Now or other labs for a ” next- generation sequencing” gene profile to find out the gene mutations if any in preparation for any up-to-date treatment option in the future if cost is not a big concern.( about 3000 – 6000).Immunology may be the answer for treating cholangiocarcinoma .
It is also not a bad idea to consider quality of life over quantity of life when time is come. Patient desire come first and should be respected.I may not be able to answer questions in my normal way,so, please look up of my previous entries to understand my ways of thought if needed.
God bless.I am new to this site and found it very informative. My dad is recently diagnosed with bile duct cancer in porta hepatia, he has very yellow skin. Surgery did not help him to resect the tumor as it spread to preitonal and liver. So in operation he had biliary stent to reduce bill level and dilation of tumor, Cholecystectomy. He is still in hospital for post operation recover, and they are going to start chemo by next week. I read many papers and mostly suggest Gemcitabin/Cisplatin as the best option. However, he visited by several specialist and all mention low survival rate. I am wondering if chemo work to shrink the tumor, will be possible to remove it later or not?
I also like to receive your idea about any up-date treatment option for this stage of CC.
Thank you.
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